Simplify Cancer

When it comes to treating cancer, we rush into it as early as possible, and rightly so, you want to get rid of it, but it’s easy to miss something crucial and that’s where we need to talk about fertility.  You want to make sure you’re clear about your options, even if you’re not thinking about having kids right now! To help you navigate the world of fertility and cancer, you’re going hear from Mahmoud, here is the expert in the field of oncofertility and is a representative of the Oncofertility Consortium.  Here is what we cover in this conversation:

Oncofertility Consortium

Save My Fertility

Reprotopia: Reproduction Education For All

Episode 009: Why The Oncologist Is Your Guide Through Cancer

Joe:                 Mahmoud, there are so many treatments for cancer that they all affect people in a different way.  When it comes to understanding the impact on fertility, it’s really important to be prepared, right?

Mahmoud:      Yes, that’s right.  I recommend that each patient who will receive chemotherapy and radiotherapy should know adequate information about the effect of the anti-cancer treatment on his/her fertility.  The main issue in this topic is that the anti-cancer treatments have some side effects.  Sometimes these side effects are very strong and dangerous regarding the fertility.  That’s why some famous scientific organisations will classify the anti-cancer treatments regarding the risk on fertility into different categories.

To speak to patients, I always say that a cancer patient should at least have the awareness about the type of anti-cancer treatment she/he will get.  I can just say, for example, as a start, the high-risk anti-cancer treatments should be known very well to the patients.  This category contains total body irradiation, so the patient will receive radiation all over his/her body.  Cranial irradiation, so radiation to the head.  Or ionizing radiation to the pelvis that contains, in females, of course, the ovaries, or for the males, the testes.  Or another type of chemotherapy, it’s called alkalating chemotherapy.  These chemotherapies are very strong.  They cause damage to the gonads.  The gonads means ovaries in females or testes in male.  This alkalating agents like cyclophosphamide or busulfan are also used in many cancers.

Or if the patient were to receive surgery including the removal or ovary in females or testes in males. These conditions are really important that the patient be aware of and he/she should know that in these conditions, there is a high risk of losing fertility, up to 80 percent.  That’s why another measure should be provided to preserve fertility.  From the other point of view, okay, this is the highly toxic, or highly gonadotoxic group of anti-cancer treatments, but when they are used, in females, the most common cancer that require aggressive anti-cancer treatment in females are breast or cervical cancers, or leukaemia, lymphoma, and central nervous system.

Any female patient that will suffer from breast cancer, cervical cancer, leukaemia, lymphoma, central nervous system, most probably will receive these aggressive anti-cancer treatments, and will be at risk for losing fertility.  For males, the most common cancers are: testicular cancer, germ cell tumour, leukaemia, lymphoma, and central nervous system.  Any male patient that will be diagnosed with these types of cancer, most probably will receive aggressive chemotherapy and radiotherapy.

Then should receive also fertility preservation measures.  This is just a summary or short account on the effect of anti-cancer treatments on fertility regarding female and male patients.

Joe:                 Yes, that’s fantastic, Mahmoud.  Thank you for sharing that.  In terms of preserving fertility, what are the main options for women?

Mahmoud:      Regarding this, we classify the options that we can give to women into three major categories.  Established options that are recognised by most of the scientific organizations world-wide and non-established options or debatable options and experimental options.  The established options are embryo freezing and egg freezing or oocyte freezing.  The debatable options include using of GnRH analog or surgical transposition of ovaries away from the field of irradiation, using of shields to protect the ovaries during radiotherapy.

Or fractionation, so we fractionate the doses of chemotherapy and radiotherapy in order to make this less gonadal toxic.  The experimental options include ovarian tissue freezing and later transplantation.  In vitro maturation of eggs and freezing by vitrification.  Very new option called artificial ovary.  It’s something very experimental but we think it will have a major impact in the future when research results improve.  This is just a summary for the options that we can offer to ladies and young girls, also.  This is also very important.

The preservations options are provided to adult or young adult women.  Also, to girls, the young girls before puberty.  Any young girl diagnosed recently with cancer at the age of younger than 12 or something can also use some of these fertile preservation options.  This is very important because the young girls with cancer, maybe they are not offered these options, as many doctors are not aware of the availability of some  preservation options to the young girls.  Fertility preservation options can be provided to young adult women and to young girls before puberty.  This is also very important.

Joe:                 Yes, that’s crucial that you’re sharing that, Mahmoud.  In terms of the time window before commencing irradiation treatment or chemotherapy, so how much time do you need for these kinds of options to put that into play?

Mahmoud:      This is a very good question because time is one of the most important factors for success in fertility preservation strategies.  As long as we have time before initiation of anti-cancer therapy, we can provide more options.  That means early diagnosis of cancer is a very important factor, or very important success factor.  That the patient diagnosed very early and then referred from the oncologist to the gynecologist or to the reproductive biologist centre team, or oncofertility team very early.

Then the oncofertility team can assess the situation and discuss with the oncologist and also discuss with the patient the number of fertility preservation options that can be offered, and then fix the fertility preservation strategy.  In emergency cases, so, for example, if the patient is diagnosed just today and she has to start chemotherapy tomorrow, for example, in this case, we have a small number of options because we don’t have time.  Time is very important and according to the time we have, we can provide some fertility preservation options before initiation of anti-cancer therapy.

We can also provide some options during the period of anti-cancer therapy and we can later, after, of course, giving the anti-cancer therapy, we can do also some measures to restore fertility.  It is basically two-step strategy.  Step one is to preserve fertility and we can do that before initiation of anti-cancer therapy, or during the period of anti-cancer therapy.  Step two is to restore fertility.  We preserve first and then after preserve, we restore.  This is how we think about time and about the options that we can provide then to the patient.

Joe:                 Yes, Mahmoud, that’s fantastic to know that there are definitely options.  What about men, what about men and younger boys?  What are the options for them when it comes to preserving fertility?

Mahmoud:      That’s also a good question that you mentioned boys, or young boys, because it is the same.  We can provide options to young boys and also to young adult men.  The same concept, we have three categories, established options, like sperm freezing or debatable options like GnRH analogs, shielding also to the area of the scrotum, or fractionation of chemotherapy and radiotherapy, and experimental options like freezing of the testicular tissue or using stem cells and some other new techniques.

I want to emphasize that the adult patients either women or men have big numbers of options.  While the younger patients, due to the biology and because they are before puberty, either boys or girls, have small number of options.  That’s why the younger patients, or young cancer patients, for us, are difficult cases a little bit, because we don’t have enough options for them.  In practice, we observe some sort of lack of awareness among doctors and among patients, or their legal guardians about their available fertility preservation options that can be provided in these cases.

Maybe I take this chance, dialogue with you, to say that young cancer patients, either girls or boys, can benefit from fertility preservation options and should be informed or well-informed about this by their oncologist and should be referred as early as possible to the oncofertility team in order to design the suitable fertility preservation strategy for them.

Joe:                 You make such a crucial point, Mahmoud.  I know that, for example, my oncologist was great in telling me about my options and suggested sperm freezing before treatment.  Not everyone is so lucky.  I guess if you are going through this process, what are some of the questions you should be asking for and what should you do if you’re not getting the answers you’re looking for when it comes to fertility preservation and perhaps talking to your specialist?

Mahmoud:      This is a very good question because this is how we deal in reality.  I can say that for each cancer patient, that once diagnosed with cancer, he has to ask his oncologist, or her oncologist, the following question: What is the risk of gonadal toxicity of the anti-cancer therapies that I will receive?  What is the probability of losing my fertility after receiving this anti-cancer therapy?  This is very important because if the risk of losing fertility as a result of the anti-cancer therapy is greater than 50 percent, then a fertility preservation strategy should be provided as soon as possible, before initiation of anti-cancer therapy.

The first question, what is the risk of losing my fertility with this anti-cancer therapy?  The second question, if the risk is greater than 50 percent, what are the possible fertility preservation options that I can receive, and where I can receive them?  It’s very important, sometimes patients don’t know where they can receive these services.  Also, these services are not present in each hospital.  These services, fertility preservation services are relatively new medical treatments and complex. You can find them only in University hospitals, for example, or specialised hospitals.

The oncologist has to inform the patient where he can, or she can get this fertility preservation treatments.  Also, it’s better to tell the patients how much these fertility preservation options or treatments cost?  In many situations, or many countries, the coverage of the insurance is not universal and some fertility treatments, even, and fertility preservation treatments are not covered by insurance.  Then they are very expensive services.  Many patients cannot afford this.  It is a complex process but very crucial, very crucial and very important to make information available to the patient and to give them a guide to where they can go and how much and if they need financial help, where also they can ask and get financial help.

Of course, the awareness of the community is very important.  There are many universities and centres worldwide that are exerting good efforts to spread awareness about fertility preservation options and care for cancer patients.  In case the patient didn’t get enough information or no information from his oncologist, he has to search at least on the internet about the major places or sites that provide enough information for this.  Of course, in the United States, there is Oncofertility Consortium at the North-western University, and they have a very good online service.

One of these services is the website: Savemyfertility.org.  Through this website, there are enough information about all steps in fertility preservation for cancer patients and good answers to most of the questions that can be asked in such situations.

Joe:                 That’s fantastic, Mahmoud.  You also mentioned that there are some experimental treatments, such as freezing testicular tissue, are these experimental methods, are they workable in practice right now?

Mahmoud:      Yes.  In cancer patients, the experimental options are new options, many scientific groups are trying very hard since a long time to provide options that can help preserve fertility in wider groups of patients.  For example, we have established options, but these established options are not suitable for all patients.  That’s why we have to develop new methods to cover more or to benefit more patient groups.  This is the concept.  Regarding the experimental options in case of female cancer patients, here comes ovarian tissue freezing or transplantations.

This technique actually is in practice for more than 15 years.  It is successful and until now, the number of babies born and reported worldwide following this technique is more than 120.  That means that a female cancer patient before initiation of anti-cancer therapy, she can receive small surgery to remove one ovary or part of her ovary.  Then we freeze this ovarian tissue for years until the patient starts chemotherapy and finishes the chemotherapy and radiotherapy and become fit again and willing to become pregnant.  At that time, if she suffered from problems to get pregnant in a natural way, then she can use her stored or frozen ovarian tissue.

We thaw out or defreeze her ovarian tissue and transplant this tissue back to the same patient again.  Then with some medications, we stimulate the ovulation again and help the patient to get pregnant.  This process was successful and produced more than 120 babies, reported worldwide.  For ovarian tissue freezing and/or transplantation, it is in practice and success rate is about 25 percent.  This is, as an experimental option, very acceptable and good success rate.  With improvement of the technique of freezing, transplantation, the success rate of tissue freezing and re-transplantation will increase dramatically in the near future.

Regarding the male patients, the testicular tissue freezing is relatively something new than the ovarian tissue freezing.  It is not widely used in practice for one reason, because the established option of sperm-freezing is very successful and very easy option.  It is satisfactory for many doctors to depend on sperm freezing.  The problem comes in the young boys.  Young boys before puberty don’t produce sperm.  In this case, we have only one option left, just to take part of the testes or testicular tissue and freeze it and then think how we can then use this tissue to produce sperm in the lab.  Many scientific works have been done in this area and they have promising results.

Until now, there are no babies born from testicular tissue freezing and transplantation, for example.  For women, ovarian tissue is in practice since more than 15 years and produced babies.  This is the difference between them.  In general, the future comes from these experimental options.  The options that are experimental now will be established within the next five to ten years or so.  We are progressing in this direction.

Joe:                 That’s fantastic, Mahmoud, to know that we are moving forward as a society in this area because there are many challenges around fertility.  They are not only medical but, of course, there are financial, legal, and even religious reasons that can get in the way.  Sometimes people can look outside of their country to get what they want, to get this sorted.  What do people need to know about that?

Mahmoud:      This is a very important question and situation and phenomenon.  Now, fertility treatments are more internationalised.  Many patients travel abroad to seek fertility treatment.  Actually, this is a global phenomenon, and it has a definition in science.  The big organisations in reproductive medicine in the United States, the American Society for Reproductive Medicine and also, in Europe, the European Society for human reproduction and embryology detected these phenomena, that many patients travel from their home country to another country to receive fertility treatments for different reasons.

This phenomenon now has a scientific term, it’s called cross-border reproduction care or fertility tourism in some cases.  Cross-border care or CBRC is a global phenomenon growing and it is a reality.  The reasons for these phenomena is that some fertility treatments are not available in some countries, or some fertility treatments are expensive in some countries, or some fertility treatments are not allowed by law in some countries due to a religious or cultural reason, as you said.  That’s why some patients don’t find these treatments or don’t find access to these treatments in their home countries, that’s why they travel to another country to receive these treatments.

For example, third-party reproduction in general and surrogacy, so sperm donation, egg donation, embryo donation and surrogacy are not legally allowed in many countries.  Patients who seek such type of treatment don’t have other options, rather than travelling to another country that allows such type of treatment.  For cancer patients, as we speak about cancer patients, this issue is very important because sometimes cancer patients don’t receive fertility preservation treatment or services before cancer treatment, for many reasons, maybe time, lack of time, or lack of awareness or whatever.

If they receive the cancer treatments and they suffered later from infertility or fertility loss, the only option for them at that time is to seek family building options, or third-party reproduction or adoption.  Some  cannot have children after losing their fertility.  In such cases, the only option available for them now is to go for third-party reproduction or adoption.  I can see many countries don’t allow such type of options and then the only way for patients in this case is to go to another country that’s allowing such types of treatment.

At any case, these patients also should receive good information about where they can go.  If they will travel abroad, their doctors or their treating doctors should tell them where they go, and which type of treatments should be the best options for them.  This is very important because countries are not universal in their legal systems, or pricing, regarding the medical service.

To avoid any kind of exploitation, or harm to the patients, good information should be provided by the treating doctor and also selection of destination, of a good destination that can provide good health services according to the international guidelines.  In this case, I guess it’s very beneficial, this cross-border reproductive care phenomenon can be very beneficial to many patients, as long as there are some control and guidance.  Some guidance and control regarding such type of treatments.

Joe:                 Yes, fantastic, Mahmoud.  I thank you so much, that was enlightening.

Mahmoud:      Thank you.

The way I see it, a clinical trial is a bridge between research and the patient, this is an opportunity to access the latest treatment out there to get the best outcome possible, which is what it’s all about, right? So, in order to find out more about how it all fits together, I’m talking to Ian Davis who is the chair of ANZUP, a group of medical experts who look after clinical trials for below-the-belt cancers.  Here is what we cover in this conversation:

ANZUP Trials Group

ANZUP ClinTrial Refer app

Australian New Zealand Clinical Trials Registry

Episode 007: How To Use Your Inner Resources To Better Deal With Cancer

Joe:                Ian, it’s such a pleasure to meet you and to talk to you about clinical trials.  I’m really excited about it because to me, really, clinical trials are the front line to fighting cancer.  It’s making a huge difference for folks out there.  Unfortunately, most people don’t realise how important this is and the critical role it plays in fighting cancer.  What’s your perspective on that?

Ian:                  Yes, thanks, Joe, for the chance to talk to you and to talk about clinical trials.  It’s very important. Every time you go to your doctor to get your blood pressure medication, or the medicine for your cholesterol, or even if you’re going to go and buy some vitamins from the chemist and you think that’s going to help you, you do that because you got some information about it.  You know that, here is a treatment that might help you in your condition or might not.  You’ve got information about how safe it is.  When you should use it and when you shouldn’t use it.  You might not be aware you got that information but it’s there.  That exists because clinical trials have been done in all of those situations.

Every time you go to the doctor and you have cancer and you’re having a discussion about what sort of treatment might be appropriate for you, the advice that’s being given to you is being given in the context that a clinical trial has been done and it’s given you evidence.  Now, we hope that that’s the case.  The reality is, for many of the clinical situations we find ourselves in, the evidence is not there, we’re extrapolating from what we know or from the basic science, or from our understanding of the condition but there might not be a clinical trial to guide us in decision-making.

In that situation, it becomes a whole lot harder to make recommendations for people.  That’s why we need to continue to push this agenda of doing more clinical trials, doing them better, so that we can get more information, help people, and support them in their decision-making.

Joe:                 Absolutely.  Yes, that’s fantastic, Ian.  There are so many myths and misconceptions about it, I think it’s really important to be really clear about that.  A lot of them is that clinical trials are administered as a last resort, is that true?

Ian:                  No, it’s absolutely not true.  Sometimes it’s appropriate to think about taking part in a clinical trial as a very first treatment.  We do a lot of those clinical trials here, at our hospital and through ANZUP Cancer Trials Group, where we do clinical trials for genitourinary cancers.  Many of the trials we’re doing are sometimes the first treatment that someone might have had from their disease.  Definitely not a last resort.  People should understand that if they’re going on a clinical trial, they’ll always get the best possible treatment.

Joe:                 Yes, absolutely.  I think that implies that it’s an experiment, this has been thoroughly researched and it builds on this body of knowledge that already exists out there.

Ian:                  That’s right.  There are different types of clinical trials.  When you’re first taking a promising treatment into the clinic to see if it works.  They don’t even know how to give these medications, sometimes they might never have been given to humans before.  We don’t know what the side-effects are, we don’t know what the safe doses are, don’t know how frequently to give these medications.  Early phase clinical trials help us to answer those sorts of questions and to give us some indication about how active it might be.

We usually have some clues about these things from earlier experiments in the lab and elsewhere, but you really have to ask these questions in humans.  Then, as you go on further in the development, process, then you start to compare the clinical trials against the best standard treatment that’s available to see is it better in some way?  Does it make people live longer?  Is it better tolerated?  Is it cheaper?  Is it easier to give?  Are there other sorts of benefits besides survival that we might be looking for, for our patients?

Joe:                 Yes, absolutely, like quality of life.

Ian:                  Exactly.

Joe:                 Cool.  I’ve heard that there’s a placebo involved.  Is that true?  How does it work?

Ian:                  Yes, a placebo is an inactive treatment.  Sometimes it’s appropriate and necessary to do that.  The way I pitch the discussion to people who are talking about this is, there are certain situations where it’s not necessary to jump straight in and have another active treatment.  Let’s say, for example, you’ve got a certain type of cancer, you know it’s there, it’s growing very very slowly, it’s not causing you any problems, it’s not likely to cause any problems in the near term, and there might not be any treatment that’s out there and known to be effective, or there are treatments, but they’ve got side-effects and perhaps it’s not the right balance for you to go down that pathway at the moment.

In that situation, the best approach for that person might be to say, we’re not going to give you any treatment now, we’re going to watch and see how the cancer grows and at some point, in the future, you might need to have some treatment.  Now, that’s not saying no treatment, that’s about the timing of treatment.  For that person, the best treatment for them right now might be nothing at all.  In that situation then, it’s entirely okay to use an inactive treatment like a placebo because people getting the placebo treatment would be getting what they would ordinarily do anyway.

So then you might ask, why have it at all?  The reason for that is that cancers are sneaky things and the treatments that we test are sometimes difficult to evaluate.  So someone with a cancer that’s complaining of tiredness, or they get a rash, or they grow a second head or something like that, how do you know that’s a side-effect of the treatment, or maybe something that was going to happen as a result of the cancer growing anyway?  A lot of the clinical trials that have been done with some of the new treatments suggest, for example, let’s take kidney cancer for example, one of the most common side-effects was tiredness.  You might thing, okay, these drugs cause tiredness, but then you look at the people who got placebo and they’ve got tiredness, as well.

So you have to understand what the baseline levels of these things are in order to really understand what the impact of the active treatment is that you’re testing.  But the converse is also true.  If we know that there is an active effective treatment for your cancer, and that’s what you should be getting now ordinarily, then it’s completely unethical to do a placebo in the trial because those people will not be getting the treatment that you know they should be having.

As I said before, if you go on a clinical trial, you know that you’re going to be getting the very best of care.  If you go on a clinical trial, which is comparing a standard treatment versus a new treatment, then the new treatment may or may not be better, the other people in the arm are getting the standard treatment that we know is best.  Sometimes the standard treatment is no treatment.  Then those people might be receiving a placebo but they’re not missing out.  They’re getting exactly what they would ordinarily do.  They’re being watched very closely, they’re getting the very best possible care.

Joe:                 Yes, I think what you’re saying is, in any case, you’re in safe hands and you’re getting the best solution out there.

Ian:                  That’s right.

Joe:                 Ian, what’s the process for putting together a clinical trial?  How does it come about and how does it evolve?

Ian:                  Well, I guess there are two broad answers to that.  When people think about clinical trials, they think about things that are run by drug companies.  They are the commonest sort of clinical trials that we do.  A big drug company out there with armies of people working in their labs come out with new treatments, and they think, here’s something that looks promising and we’re going to make zillions of dollars out of this and cure cancer and our shareholders are going to be happy.  Nobody is going to be angry at that company if they cure cancer and I’d be delighted if they put me out of business.  In that situation, they will then come to people like me who do clinical trials and say, “Are you able to find people to go into this clinical trial.” We look at the science behind it, we look at the clinical trial and the safety and the ethical aspects of it and say whether that’s something that we do.” That’s something that comes from externally.

The other broad group of clinical trials are what we call: Investigator initiated trials.  This might be where someone who’s experienced in the field says, look, there’s a real clinical need here.  These people are not doing as well as we would want them to do, the treatments we’ve got are not as good as we would like them to be. Here’s an idea about how we might improve things.  In that situation, the idea has come from that person, that’s why it’s called investigator initiated.  That might be a very small-scale trial that’s done in just one or two places.  Or it might be quite a large-scale trial.  ANZUP, for example, has led several international clinical trials that have totalled several thousand patients.  These are investigator-initiated trials.  These are ideas that we came up with and have developed with our local and international collaborators and rolled out hopefully to change practice in the future.

In that situation, you bring together a team of people to look at the science, look at the treatment, experienced in clinical trial design and all of the operational and ethical aspects behind all of that.  Some of the practicalities that people might not think about, like how do you ship the drug and how do you dispose of it when it’s expired and what do you do about the safety reporting and all of those sorts of questions.

We always try to add value to it, as well.   Are there other questions we can ask?  Can we understand the science a bit better by collecting tissue or blood samples?  Can we look at people’s quality of life and see if this treatment is having effects on that?  Can we look at some of the health economic issues around this treatment, as well?  This treatment we’re testing might work just as well as the old one, but it might be a much more cost-effective way for the community to spend its health dollars.  We always try to add extra value to our clinical trials in that way.

Joe:                 It makes so much sense.  You mentioned change of practice, so who decides whether the treatment has worked and if it’s to become a part of standard protocol?

Ian:                  That’s a really interesting question.  There are several levels to that.  The first answer is the look shiny thing response.  We’re humans and we love to see novel things come through.  Our initial reaction is, something comes through, it’s new, it’s got some exciting science behind it, it must be better.  Sometimes it is, sometimes it isn’t, sometimes it’s just the same as the old treatment, sometimes it’s actually worse and we use the previous one.  That’s going to alter practice in that way.  In practical terms, if we’re talking about drug treatments in particular, it really comes down to making that treatment available in wherever you might be.  Different regions around the world have got different ways of approving and reimbursing drugs.

In the United States for example, if you get FDA approval, then you can access that drug.  You might have to pay for it and that’s a whole separate question.  In Australia, there are two levels of approval.  It needs to be approved by the Therapeutic Goods Administration, that way we can legally prescribe it in Australia.  Really, it’s how it’s taken up into practice that needs to be reimbursed through the Pharmaceutical Benefits Scheme.  That’s a much more difficult hurdle to jump over because the government has to tip money into supporting these things and they’re often expensive treatments.  Once that has happened, then treatments are far more likely to be taken up.

Some treatments, though, are using old drugs in new ways.  An example recently is in prostate cancer, where a few years ago some evidence came out that using a relatively old chemotherapy drug in a different way, much earlier in the disease course, translated into far better outcomes in terms of survival.  That information came through at exactly the time that that drug was derestricted on the Pharmaceutical Benefits Scheme, so it was cheap and easy to use.  Uptake of that information happened literally overnight.  The next day after the conference, people were getting that treatment in Australia, it was taken up very rapidly.

Joe:                 Wow, that’s fantastic.  You mentioned also different scales.  You said that sometimes there’s a small group of patients who go through clinical trials, sometimes there’s a bigger group.  How is that decided, and does it depend on a drug?  Does it depend on the treatment, how does it work?

Ian:                  That really comes down to the question that you’re trying to answer.  If you are early in the development of the drug and you’re looking for information about how to use it, how often to dose it, what doses to use, what the side-effects are, phase one of clinical trial, you often require only a few patients to get that information.

A phase two clinical trial would be where you are rolling it out into a group of people, all with the same sort of disease and you’re trying to see how effective this treatment might be.  You need larger numbers, but it might be 50/100/200 patients typically on a study like that.  If you’re trying to do a phase three clinical trial where you’re now putting it up against the standard treatment to say, is this actually better or at least as good as the previous treatment, then you often need hundreds or even thousands of patients.  Particularly, if you’ve already got very effective treatments, it might be quite hard to prove to yourself that you’ve got something that’s doing even better than that.  That might require a lot of people followed for a long period of time before you get that information.  It really does come down to the questions you’re trying to answer in that specific trial.

Joe:                 Absolutely.  Then there’s another area that’s fairly recent, is the online interventions, and I just wanted to talk to you and get your perspective about how does that work?  How does it get implemented across the world if it goes to plan?

Ian:                  We’ve been talking about clinical trials in the usual sense that people think of them, in terms of here’s a new drug, let’s test it.  Of course, there are other sorts of clinical research that can be done, as well.  Clinical trials might involve surgical devices.  It might not involve any sort of typical medical intervention.  As an example, ANZUP did a clinical trial a few years ago of a supportive care intervention for men with prostate cancer.  This was a psycho-oncology study led by one of our researchers, Professor Suzanne Chambers from Queensland, now New South Wales.  This was a study using a behavioural therapy to try help them and their partners deal with the issues around prostate cancer.

There are other sorts of clinical studies, as well.  ANZUP is running something called e-TC, which is a web-based approach where men with testicular cancer can login and find out information about testicular cancer to meet their own needs.  If they want to work through all of the modules on their website, they can do so.  If they’ve got a specific question, they can target in and answer that information.  That will help you in terms of provision of information and it might steer you to other support systems, as well.  Those sorts of systems also lend themselves to other types of research.

We can also collect information from people using systems like that, that can help answer other types of questions.  For example, what is the information that people with testicular cancer need to understand?  What are the most common sorts of issues they need in terms of supportive care or other sources of provision of information?  There are other types of research that can be done through those sorts of online interventions.

Joe:                 There’s typically, I understand, a group of people that are possibly from different disciplines that are working on putting together a clinical trial, is that true?

Ian:                  ANZUP is a very multidisciplinary organisation and I think that’s one of our strengths.  We are made up of clinicians and researchers from all types of medical and other disciplines involved in the care of people with these types of cancers and in research of these condition, as well as community representatives and other stakeholders too.  We think that we get most value out of these sorts of trials when we’ve got people coming at them from a whole range of different perspectives.  That’s what I was talking about earlier when I said we’re trying to add extra value to these clinical trials.

We don’t want to know just how safe this drug is, or this intervention is, or whether it improves survival, that’s important information.  If we’re making people live twice as long and they’re three times as miserable, then we’re not doing anyone any favours.  We have to understand those sorts of questions, as well.  wherever possible, we try to get that broad base consultation and trial design right from the beginning, so that we can collect the information that really is going to make a difference.  In many cases, coming back to your earlier question, that sort of information might make the difference as to whether a treatment really is adopted as a standard therapy or not.

Joe:                 Yes, absolutely.  You mentioned there are different trials but there is definitely a progression from different stages through how its designed.  Does every treatment for cancer go through a similar process?  With those different check points and different stages?

Ian:                  In broad terms, yes.  There has to be the first time that you try this treatment in humans and you have to work out how best to give it.  Sometimes the process is accelerated.  If you’ve got a magic treatment that makes your cancer disappear, then that’s going to go through the process quite quickly, all the way through to approval and it might skip some of those stages along the way.  In general terms, there is a steady progress through these phase one, two, three clinical trials.

Then after a drug is approved, there’s often phase four clinical trials, which is basically post-marketing surveillance. That’s when you’re going to find out what the real-world experience is in the community and do these drugs perform as advertised?   Are we starting to see the really, really unusual and rare side-effects that you wouldn’t have picked up in the smaller numbers in the earlier phase clinical trials?

Joe:                 Got you.  Where does the money for clinical trials come from?

Ian:                  This is a perennial question.  If it’s a drug company sponsored clinical trial, then they will provide the drug and the resources for doing the study.  That money is spent at the hospitals, not on me, it doesn’t go into my pockets.  It’s spent on paying the salaries of the research nurses, the costs of giving the treatment.  Now, if it’s intravenous treatment, or if it’s requiring time in hospital, or those sorts of issues where you need to actually use some resources to give the treatment, that’s where the study costs go.  Paying for ethical review, paying pharmacy costs, all of those sorts of things behind the scenes.

For an investigator initiated clinical trial, then it becomes much more complex.  An example of ANZUP, we received some federal government infrastructure money through Cancer Australia, which provides us with some infrastructure support.  That helps us pay some of our salaries in the office and keeps the lights on and puts paper in the photocopier, but we’re not allowed use any of that money to actually run a clinical trial.

Every time we’ve got a clinical trial, we have to find the resources for that separately.  If I came up with a cure for prostate cancer today, and as I’m speaking, it is the end of July 2018, then the earliest I’d be able to put in a grant application to the NHMRC will be early next year.  I’ll find out the result of that at the end of next year.  I’ll have maybe a ten percent chance of success for funding to start in 2020.  That’s 18 months away from now and I just told you I had the cure for prostate cancer. 18 months before I can even start doing that, if I’m relying on that.  We’re always looking for other creative ways of supporting this sort of research.  ANZUP has got a fundraising arm to it, so we can try to at least initiate some of these studies off our own back while we’re waiting for grant funding.

We often do work with pharmaceutical companies, the difference there is, though, we are the sponsor of the study, not them.  We control and own the data and not the company.  They get benefit from it because we’re testing their treatment, but this is our trial, they’re not driving it.  There’s a level of independence from the drug company there.  That’s a model that’s worked very well.  The companies like it, as well, because they get very high-quality data in a short time on questions that they might not otherwise be studying.  It’s a perennial problem for us.  Clinical research is expensive and it’s slow and difficult, but really important.

Joe:                 Yes.  Ian, I know you have a perspective on these magic cures for cancer, as well, so are we likely to get a cure for let’s say prostate cancer or testicular cancer or kidney cancer?

Ian:                  You’ve listed three interesting cancers there.  That’s three that have great interest to me.  For people that might not know, testicular cancer is almost always curable right now.  That gives us a challenge.  It’s going to be difficult to improve upon that.  Prostate cancer and kidney cancer, if it has spread beyond where it started, is usually not curable.  Our treatments are aimed to controlling to disease, hopefully shrinking it down, hopefully making people live longer and live better, but understanding that we might not be able to get rid of the cancer.

Your question is about whether we’re ever going to be able to cure these cancers.  I don’t know.  A lot of very famous people have gone on record of saying silly things.  Man will never be able to travel faster than 45mph.  They’ll be one IBM computer in every city one day.  Silly comments have been made.  I’m not going to make any rash predictions.  The challenge for us, though, we use terms like cancer, like prostate cancer, as though this is just one entity.  That’s not the case.  Even within a single person’s cancer, there’s literally billions of different cells and many of them are genetically distinct and behaving in different ways.

Even in that one person, you might have some cancer cells that are sensitive to a treatment and some that are not.  We’re trying to think of clever ways around that, so some of the new immune-based treatments that work by stimulating the immune system have their effects, not by acting on the cancer but by stimulating normal cells, trying to get the immune system to reject the cancer like it would reject my kidney if I put it into your body.  That’s attractive and is looking very promising in a number of cancer types.

It’s been seen by many in the community as a really significant step forward, and it is, but to our disappointment, it doesn’t work in every type of cancer.  We’ve still got to understand why.  I think we’ve still got a long way to go, unfortunately.

Joe:                 Cool, got you.  Ian, I know you’re passionate about people having a mindset, when they would go into hospital about to start treatment, to be asking whether there’s a clinical trial that’s possibly available to them.  Can you talk about that?

Ian:                  That’s my dream, that we get rid of this guinea pig mentality that people go along, and they’ll have the conversation with their doctor and say, okay, I understand what the standard treatment options are, are there any clinical trials that might be suitable for me?  There might or there might not be, but if there are, then I would hope that people would consider taking part in those sorts of things.  We’ve very excited about that.  We’re trying to build that sort of capability.  It’s difficult and it’s often seen in health services as something that’s in addition to the usual clinical service provision.  I don’t think that’s true at all.  I think that clinical research and clinical trials are absolutely integral to what we do and should be part and parcel of our everyday work and therefore, part of our everyday treatment, as well.

Joe:                 Fantastic.  If you’re a patient, how do you find out about that?  Do you go to ask a specific doctor?  Do you keep track online?  What do you do?  How do you understand about how it works?

Ian:                  Probably the best starting point is to talk to the specialist that’s looking after your condition.  GPs are often well-informed in general terms about clinical trials but might not know the details of the specific clinical trials.  Your specialist should understand that and should be able to point you in the direction of where these clinical trials are happening, or where to find out more information.  For people who just want to find general information, there’s a number of sources.  You can go to Cancer Counsel websites, there is an Australian and New Zealand clinical trial registry, ANZCTR, if people Google that, that will come up.

There’s a site based in the U.S.  called clinicaltrials.gov.  Which is also good.  Some of these are in more technical terms, though.  ANZUP and other trial groups have an app that you can download for Apple devices or Android devices called the ANZUP ClinTrials Refer App.  That’s really fantastic because it will tell you in the case of ANZUP, for example, all the trials that we’re doing and whatever disease, where they’re open, some information about the trial and where to go for more information.  That’s pitched at not just clinicians but anyone in the community.  It’s a fantastic resource.

Joe:                 Fantastic.  Ian, if someone wanted to start treatment for cancer and they were considering a clinical trial and they’ve never heard about it, what would you tell them?

Ian:                  The way I approach this is, I try to explain everything I can about the condition to this person and what the current standard options would be for them.  If there is a clinical trial that’s appropriate and suitable for them.  I then put it into that context.  If this is someone who’s thinking about having some form of active treatment and as a clinical trial, that’s when I would then bring this in as an alternative for them to be thinking about.  People need to understand, they don’t have to do this, this is completely voluntary.

If there is a trial that’s suitable for you and someone is recommending it for you, they will give you information about it.  We encourage people not to make snap decisions.  We like you to go away and have a think about it, take this written information away, read it, scribble on it, talk about it with whoever they want to, then come back and tell us what their thoughts are.  They might say at the end of that, look, this sounds interesting but it’s not for me.  In which case, that’s absolutely fine.  It doesn’t affect our relationship with you at all and we’ll continue to do what we’re going to do anyway.

If the clinical trial looks like it might be something that they’re interested in, then generally what we do is get them to sign the consent form.  That consent form is not a mortgage.  What that means is, they are agreeing to take part in the next steps of the clinical trial.  That means also that they allow us to collect information about them, that’ll eventually be published somewhere, but not in a way that they can be identified.  It allows us to use a treatment that might not otherwise be approved for use in Australia and all of the other information that’s in the consent form.

I also point out to them that if someone goes under a clinical trial and at any point they want to or need to come off that treatment, they can.  They’re not locked into something.  We encourage people not to and this is a good reason, but if there is a good reason, then of course, that takes priority.  People’s best interests are always paramount when we’re giving any sort of treatment and in particular when people are on a clinical trial.

Joe:                 Yes, that’s fantastic, Ian.  I love that there is no pressure, that as a patient, you still feel in control of the process

Ian:                  That’s absolutely right.

Joe:                 Cool.  If someone wanted to find out more about ANZUP, maybe even find a way to contribute, what would you do?

Ian:                  They could go to our website which is: www.anzup.org.au.  There’s a lot of information there about what clinical trials are, in general, and also specific information about our clinical trials.  If people want to contribute financially, and some people are very interested in doing that, then there’s also information on that website about how people can contribute in terms of financial contributions, but also in terms of raising awareness about clinical trials and what we do.

Joe:                 Fantastic, Ian.  Thank you so much.

Ian:                  Thank you very much.

Yes, it’s hard to put up with cancer, but isn’t it also true that you’ve had to stand up to challenges before?   Isn’t it true that you’ve had to come up against problems, against pressure, you had to deal with uncertainty, so is there anything that’s helped you then? Something that’s made things easier? Something that you could perhaps apply to your life right now? This is just one cool strategy that you’re going to hear about from Lisa.  Lisa Beatty is a psychologist at Flinders University in Adelaide and she has developed this fantastic online program called: Finding My Way, that helps you and me to deal with cancer physically and mentally. Here is what we cover in this conversation:

Finding My Way

Cancer Council SA launches Finding My Way

Depression and anxiety in long-term cancer survivors compared with spouses

Carers Australia

Episode 023: Getting The Support You Need, On Your Terms

Joe:                 Lisa, you obviously have seen a lot of folks who struggle with the mental side of cancer and I guess some things come up over and over again.  What are some of the commonalities that you see?

Lisa:                 Yes, there are quite a few commonalities, regardless of what sort of cancer type people have or whether it’s advanced or early stage cancers, there are lots of similarities in terms of the initial emotional impact.  There’s the initial shock of the diagnosis.  I see a lot of people struggling with guilt about what they’re putting their family through, also a lot of distress.  It might not necessarily be at the level we’d say is clinically significant depression or a depressive episode, but it’s definitely impacting on their ability to enjoy their life and do their normal activities.

Also, things like a lot of worry and fear during treatment, about how their treatment is going, whether it’s working, uncertainty about how their test results are going to be going as they go through.  There are lot of those, those are the common worry, fear, anxiety, distress, and sadness and depression can be really prevalent as well.  We know that when people are going through treatment, depression is the most commonly diagnosed problem for people.  Where they actually have lost interest and pleasure in normal activities and they’re feeling consistently down and sad and depressed, as well.

They’re the most common hurdles that we see.  Then on top of that, there are also things like a lot of people struggle with body image changes.  If they’re going through things like chemotherapy, then their body image can really quite drastically change.  A lot of hair loss, not just on their head, but whole-body hair loss.  Also, people who have had surgery or might have, for example, if it’s bowel cancer, they might have a stoma for the first time.  It’s a lot to adapt to.

I think that’s the biggest thing, summarising all of that into one sentence.  It’s a huge adjustment.  We would tend to just say that these are people having difficulties coping when they’re adjusting.  They’ve never had to adjust to anything on this scale before.

Joe:                 Yes, absolutely, Lisa.  You mentioned clinically significant.  When we’re talking about depression or anxiety, clinically significant, does that mean that it’s similar to depression you get outside of cancer?

Lisa:                 Yes.  I think that’s a really good point to make, that depression in cancer is the same as depression in the general community, in terms of how it looks.  It can be a bit difficult to tease apart somethings because the side-effects of the cancer treatment can overlap so much with the common symptoms of depressions.  Things like feeling really fatigued, that’s often a side-effect of the treatment, obviously, and it’s also one of the core symptoms of depression.

What we tend to look at in worries about the loss of interest in pleasure, rather than whether people are able to do activities because of fatigue.  When we’re talking about whether it’s clinically significant, we’re talking about whether it’s at that level where there are two key criteria, whether it’s at the level of severity, whether it’s actually affecting people’s enjoyment of life, that they’re feeling so down that they’re just stressed all the time and it’s really impacting their joy for life.  The other one would be if it’s impacting on their functioning, their ability to do their normal activity.  If their depression or their distress or anxiety is at the point where they’re having trouble doing their normal parenting roles, or getting themselves to work, and again, this can be a bit difficult to tease out because some of these roles are affected by the cancer treatment.  Yes, if it is at that point where it’s actually having that knock-on effect in other areas of their life.

Whereas, I think everyone will have some level of distress when they’re diagnosed with cancer, but a lot of people will find that they’re able to, with support and with time, still be able to maintain a certain level of enjoyment of life and ability to do their normal roles.  Really, what differentiates that clinical level is when it’s actually impeding their level to do that.

Joe:                 Yes, absolutely, because, you know, Lisa, one thing that I guess most of us don’t realise is that we need help on a psychological level.  You don’t really think about it, it’s cancer and it’s supposed to be hard.  It doesn’t occur to people to ask for help.  What do you think about that?

Lisa:                 My response to that is, just because it’s supposed to be hard doesn’t mean that you have to do it alone, or that it can’t be done without help.  That classical saying, a problem shared is a problem halved.  I think that recognising that this is a hard chapter in your life doesn’t mean that it has to be done on your own, and that it is hard.  There are always ways of making things easier and if you think about other areas of life, where people go through traumatic experiences, you would expect to find those hard too, but you would also expect it to be appropriate to go out and get some strategies on board to help make it a little bit easier.  Yes, definitely.  It’s supposed to be hard, but it doesn’t mean that’s it’s not amendable to change and to make things a little smoother and easier with a bit of support around you.

Joe:                 Yes, absolutely, Lisa.  That makes so much sense.  Speaking of strategies to deal with, in terms of self-management and self-help, what can you do yourself as a person who’s going through cancer?   Maybe as a patient, as a cancer survivor, what are some of the approaches you can do to get through it in a better way?

Lisa:                 There are a couple of things, first of all is, don’t be afraid to reach out and use the resources that are actually out there, that are available to you.  Some of them are the Cancer Council, all the different Cancer Councils around Australia, they’ve got some great resources on their website.  Some of them are on things like managing your emotions, coping with cancer.  There are also some print-based resources out there, as well.  A lot of these ones with the Cancer Council, you can print out as well.  Depending on what sorts of cancer you’ve got, then a lot of those websites, like the National Breast Cancer Foundation or Prostate Cancer Foundation, they might have some resources as well and really useful strategies for getting started.

                        On top of that, though, from the psychological point of view, from where I’ve come from, a lot of the work I do is actually on self-management, so we’ve ended up developing some web-based resources ourselves to help support people that are now fully available to the cancer group, that will guide you through the most commonly experienced issues and then set you on some support strategies and things that you can do yourself to help you manage.  Those are some of the resources that you can use.  Just as general advice, I think that if there’s one general rule of thumb I tend to tell people, it’s that people often make the mistake of assuming that when they’re feeling crap, they make that statement.

Once I start feeling better, whether it’s feeling better physically or whether it’s feeling better emotionally, once I feel better, then I’ll start doing more things.  I’ll start going out and seeing my friends again, I’ll start going back to the gym, I’ll start doing a little bit of more activity in terms of going to work.  They have this wait until I feel better before I start doing more.  What we actually know from all of the research out there is that for physical wellbeing, as well as emotional wellbeing, you actually need to address that.

You need to start doing a little bit more, just a little bit more all the time, over time.  Not heaps straight away, but you need to do a little bit more in order to feel better.  Don’t wait to feel better before you do more, you need to do more in order to feel better.

Joe:                 That’s a fantastic point, Lisa.  I love it.  Yes, that makes so much sense.  That you really have to start the change and keep going, not wait until a better time.  As we know with everything in life, there’s never going to be a perfect time to do anything.  There’s never going to be a perfect time to change jobs, there’s never going to be a perfect time to start a family, there’s never going to be a perfect time to get over cancer, you have to start with it now and make changes now.

Lisa:                 Exactly.  Especially for when you’re struggling emotionally, it can be a huge barrier because you think, I’m lousy company, I’m feeling so woeful, I’m just going to drag people down.  It can be really hard to get past that and go, I’m going to put myself out there anyway.  Like everything, the first time is always the hardest, then it ends up being a little bit like dominos, that once you flick that first domino down and get a little bit of activity happening and do a little bit more, it ends up being a lot easier to then keep building momentum from that and that becomes less scary to do more as you go.

Joe:                 Cool.  Yes, builds momentum, love it.  That makes so much sense.  In terms of dealing with everyday stress around anxiety, so how do you actually – when you start to make all of these changes – how do you know that you’re making progress?   How do you know that you are getting better?   How do you know that you’re getting a better grip on managing this side of things?

Lisa:                 Yes, so coming back to how you asked me earlier about what clinically significant distress looks like.  I know it’s such a clinical term, sorry.  The two things I said there that indicate things are a problem are also going to be the two things that are an indicator that you might be making improvements.  Those are if you feel like you’re able to do those activities without them causing quite so much distress or worry, then that’s one sign that you’re doing a bit more gradually.  Then the second is that how distressed you’re feeling while you’re doing more is starting to drop, as well.

It’s those two things, the level of distress, the severity is starting to drop and also the level of activity is going up and your ability to do your normal activities is starting to improve.  I think the key for this is that people have the tendency to either compare back to what they used to be like before cancer and that’s their benchmark and they keep striving for that.  They think, I’m not there yet, I’m not back to normal, I’m still really struggling, I’m not me again until I get back to this level.  Or they focus so far on how far they’ve yet got to go.  They’re comparing back to what they used to be, as well as projecting really far forward and how far they’ve got to go.

That they’re not really tracking – okay, compared to one week ago or two weeks ago, what am I doing now that I wasn’t able to do one week or two weeks ago?   Really start to celebrate those small wins as you go, rather than thinking on how far you still have yet to go.

Joe:                 Yes, that’s fantastic, Lisa.  It’s all about untangling past, present, and future.  If you start comparing yourself to whatever you did before, years ago, or maybe things where you think you should be, just in general, maybe projected into some imaginary future that doesn’t even exist yet.  It’s all about dealing with the present, right?

Lisa:                 Exactly.  Can I just catch you there, as well, because that’s something I spend a lot of time dealing with, is the shorts, people are so good at shorting themselves during cancer.  Part of it is that the media is really great at putting this image about what a cancer patient and a cancer survivor should look like.  People think that unless they actually are that image or are living with cancer in that way, that they’re not coping.  They end up putting out this certain image of themselves about how they should be coping up on a pedestal and then it ends up creating even more distress for themselves when they feel like they’re not attaining that goal.

One of the examples that we get a lot of is that the media, the general media, they project this general idea of just be positive, if you’re positive, you’ll beat the cancer, you’ll cope better.  Just think positive.  Often, when people are feeling crap, physically, excuse my technical language there, but when you’re feeling really unwell physically and emotionally, mentally, everything.  To be told that you have to be positive is just yet another short that you’re adding to that mix.  It can seem completely unattainable, then you end up with this worry on top of that, gosh, if I’m not thinking positive, I’m going to have worse cancer outcomes.  The truth of the matter is, no evidence, there’s no research evidence that has extensively looked at there’s a relationship between thinking positively and survival.  It just is not there.

Joe:                 That’s a great point.  I propose a new term, we can call it scientifically crap.

Lisa:                 That’s right.  We’ve coined the clinical terms, significantly crap.

Joe:                 That’s right, Lisa.  You’re exactly right.  You don’t’ want to, as a cancer patient or as a survivor, you don’t want to live up to this hyped up images you see on TV of people conquering cancer and living despite all odds and running around with a smile on your face.  Sometimes you are just down, and its crap and you don’t know what to do with yourself.  What do you think are some practical ways to get things under control?   We’re not talking about just positivity, although, being positive helps, but just getting things under control where you feel you’re going to have more in charge of what’s happening and be in charge of your life?

Lisa:                 Yes, if you’re feeling really down and almost at the point where you’re having trouble getting out of bed in the mornings.  I do work with people who are at that level where getting themselves out of bed in the morning is the win.  I was saying, celebrate the small win.  That’s okay, let’s start setting a regular alarm, put that alarm out of your reach and start your day jumping straight into the shower.  It can be that level.  You started the day, you’ve got it underway.  At that same time, you’ve done that two days in a row, fantastic.  It’s about really starting with where you’re at rather than jumping ahead to where you think you should be.  There are the should again.  Start with where you’re at and work out what’s the next step?   What’s the first win?   What’s that first domino that you can knock over to get things started?   It might also be about linking in with your GP or a member of your medical treatment team wherever you’re receiving your cancer treatment from, and really linking into them and saying, if I’m really struggling, there is a well for anti-depressants as well.

Don’t be afraid of actually getting all the resources on board because we’ll often tend to say when you’re really struggling with distress and depression, it’s like being at the bottom of a well.  If you imagine you’re at the bottom of the well and there’s a ladder on the side of that well but it’s out of reach, the role of the anti-depressants is to put you on the ladder.  It gives you that first step.  Then from there on in, it’s your own efforts that gets you out of the well.  It doesn’t mean you have to be on them forever.  At the same time, there’s definitely a role for anti-depressants for people who are really struggling even getting those first early wins on the board.

Joe:                 Yes, so anti-depressants can really help someone to make that step forward, is that right?   You can stop that when the right time comes?

Lisa:                 Yes, I guess one way of thinking about it is that for some people, even they don’t have the capacity when they’re feeling so low to even focus on concentrate on work.  It’s so overwhelming to even think, what’s one thing I can do for myself.  Whereas, once you can get those anti-depressants on board, it might just create a little bit more of a foundation to start building on.  That’s the role of them, they’re not happy pills, they don’t magically fix everything, but they just create a little more stability so that you can build upon it and work and put the hard work in yourself to then be able to create a good, stable framework for keeping yourself well, ongoing.

Joe:                 That’s good to know, Lisa.  The other thing I wanted to talk to you was, the fact that cancer can be a real test for friendships, for relationships.  From the perspective of someone who had cancer, you don’t want to look weak but at the same time, like you mentioned, you don’t want to also put pressure on people talking about your problems all the time.  Also, if your friend or a partner, you also don’t want to say the wrong thing or do the wrong thing.  It’s confusing.  What sort of advice do you have on that front?

Lisa:                 Yes.  I hear that a lot, there’s a common statement that I tend to hear about.  That when people are going through cancer treatment, that they find out who their true friends are.  That can pad out the deadwood or the driftwood and that they’re really surprised that some people who may not have been close friends before they were diagnosed with cancer, they really step into the foreground.  While other people they would assume would be their key support people are the ones who end up stepping into the background and fading away.  They may not even hear from them again.

That can be incredibly hurtful, understandably.  The thing I would say, it’s really hard when you’re going through this and you have a level – you need your support group around you.  It’s where possible, be kind and I think what people have to recognise is that cancer activates all sorts of release and fears for everyone.  It really does raise awareness of mortality, not just in the person going through the cancer but for everyone.  When you hear that, you never know what someone else’s back story is.  Even friends you know really well, maybe they lost someone to cancer and never actually disclosed.

Hearing that your diagnosis has brought all of that back up and re-triggered them.  You don’t actually know what someone is going through themselves.  There might be a reason why they haven’t been able, legitimately able to be there for you.  Even for those who don’t have that backstory, cancer is scary.  It is scary.  As you said, they may not know how to say the right thing.  The more time that passes before they’ve actually come and said something to you, the harder it is to then go on.  Gosh, it’s been one month, and I should have been in contact by now.  It’s been two months now, my goodness, I’m being a terrible friend.  That ends up becoming the barrier, that they haven’t actually been in contact becomes more and more challenging for them.

In terms of how to overcome it.  Two things.  One is, where possible, try not to, even though it’s hurtful, try not to personalise and think it’s about you.  It’s actually about what’s going on for that other person.  That’s why they haven’t reached out.  The second thing is, I think it’s about if you are the support person and you want to know what’s a useful starting point and you don’t know what to say, that’s actually the starting point in saying, I’m so sorry that you’re going through this, I want to be there for you but I’m finding this really hard.  I don’t know what to say and I’m worried I’m going to say the wrong thing.

Then you might use that as the starting point, what are things that could be helpful for you, as the person going through cancer, what do you need?   What can I do to support you?   Instead of fear of you’re going to say the wrong thing, use that as your platform.  Use that as your opening statement.  I wish I knew what I could say right now, I wish I knew what I could do.  Can you help me?   What would you like from me as we go through this together?

Joe:                 That’s exactly right, Lisa, because that’s you’re being proactive and you’re taking the first step and you’re saying, it’s okay to say whatever.

Lisa:                 Yes, that’s right.  I think most people would say that, they would far rather someone say, not quite the right thing but even the wrong thing, but they’re actually there and present, than someone’s fear of saying the wrong thing, making completely absent from your life, while you’re going through a traumatic time.

Joe:                 Yes, I completely agree with you.  Also, on a similar subject, when it comes to caregivers and the partners or parents or children of someone with cancer, because they often have to deal with a lot, they have to sometimes not only support the person who’s going through cancer, but they have to go on with their daily life.  If it’s stressful for them, what can you do as a caregiver to help the person who’s going through cancer or building a life after cancer, of maybe even helping yourself?

Lisa:                 Yes, I think that’s a really important point because we actually know from the research that caregivers and loved ones have the same level, if not higher levels of distress as the person that’s going through cancer.

Joe:                 Wow.

Lisa:                 Yes.  They don’t have nearly the same level of support around them because the focus is on the person with cancer.  It is actually about recognising and saying it’s okay for me to be struggling right now.  When I worked with people with cancer, I’m always saying, cancer is actually a family illness, it might be one person that’s got the cancer in their body but it’s affecting everyone in that household.  It’s affecting everyone under the roof.  Just because you don’t carry the cancer in your body, doesn’t mean that it’s not affecting your in just as many ways as the person who’s going through it.

It’s about really trying to normalise and validate that.  It’s actually a struggle for everything, whether it’s children, whether it’s young children, adult children, as well as partners.  Whoever is in that caregiving role, and often it’s spread across everyone in that family unit, they will actually need some resources to help them through.  If you are a caregiver, don’t be afraid.  A lot of the time, if there’s a psychologist or a mental health clinician attached to wherever your loved one is receiving their treatment, they will generally make those same services available to the loved ones as well.  It’s not just necessarily for the person with cancer.  Also, there are groups like, look up the website, Carers Australia, they often have resources and strategies as well listed there.  That’s a good starting point, too.

Joe:                 Cool, thank you, Lisa.  Speaking of resources and strategies, you know that I love finding my way because it’s such a great tool.  I first talked about it from Bogdan and it really sounds like it’s been a lot of years in the making.  It sounds like your life’s work.  I think it started as a self-help manual, is that right?

Lisa:                 That’s right.  This now is a 13-year journey for me.

Joe:                 Wow.

Lisa:                 As you say, it has been my life’s work.  I started in this area as a new PhD student and I was really aware that while we’ve been talking about accessing supports, for a lot of people, there are legitimate reasons why they can’t access face-to-face support, whether that’s with a psychologist, a psychiatrist, a social worker, any mental health clinician.  There are many people where geography in Australia gets in the way.  There’s not always a handy psychologist that knows about cancer around the corner.  Yes, for people who live rurally or remotely, that’s a really challenge for that group of people.

It’s also as much as they’re trying to make headway with this, there is still a stigma associated with going and seeing a mental health clinician.  That can be another thing.  There are a lot of people out there, who even if they’re not concerned about stigma or geography, they just have a personal preference.  They would rather deal with this on their own, in their own time, in their own space.  When they’re ready and do it through their time that way.  They’re not really interested in seeing a psychologist for it.  There’s a whole heap of reasons why we ended up going down this road.

They don’t want to access traditional services, but at the same time, they’re still struggling, and we know that their medical outcomes, as well as their psychological outcomes will be worse if they don’t tackle.  That’s something I don’t think I make clear earlier why people ought to do this, that outcomes like medical as well as psychological are worse if you don’t get in and treat that distress.  We need to come up with a new way, a new avenue of trying to help people and get these same tools that we’ve been providing with them, working with them face-to-face, we need to get these tools onboard in a different way.  Here we started with my PhD doing that in a self-help book.  Just with women with early-stage breast cancer to start with, we found that was really effective in helping reduce the stress and improving coping and quality of life.  We then from there with ongoing research adapted it into an online program for all types of early stage cancer, so that’s cancer being treated.

Now, we’re at the point where we know that’s been really helpful and that’s the one that’s now freely available that anyone can access.  Now, we’re at the point of trying to adapt that for women with advance or incurable breast cancer, with the aim, longer term, again, of sending it out to other types of cancer, as well, of advanced cancer.

Joe:                 Yes, fantastic, Lisa.  Love it.  I guess where I’ve seen the commonality here is that a lot of the challenges that people go through are universal whatever the type of cancer, is that right?

Lisa:                 That’s exactly right.  Yes, we often think that the findings in a lot of research and one of the criticisms you’ll find is you’ll often start with breast cancer, to try things for the first time because women with breast cancer are pretty good a reaching out and making use of resources when they’re made available.  There’s also a lot of them.  It’s the most common cancer that occurs for females.  We’ll tend to often trials things for the first time and see if it works there, then hopefully we might be able to extend that out and make it work for other types of cancer, people with other types of cancer.

Yes, you’re exactly right, we have found that it doesn’t matter what type of cancer you have, that some of those, especially in terms of the psychological and emotional issues, it can.  There are enough commonalities across and universal experiences across the different types of cancer, that it’s better to create a platform for everyone.  Then you can add additional resources to make them cancer specific, depending on what your unique cancer type is and some of the more particular needs that arise there.

Joe:                 Fantastic, Lisa.  How does Finding My Way, how does it work?

Lisa:                 Yes, so Finding My Way, it’s a six-week program.  As I said, it covers the most commonly experienced issues.  We developed this in consultation with people with cancer so that we knew up front what the issues were, as you probably guessed, I’ve worked with people with cancer for a long time, too, so you’re bringing in that kind of knowledge, as well.  The six modules to start with.  It’s on one of the issues that come up straight after diagnosis and communication with members of your medical team and making decisions about your treatment.  That’s the initial, you’ve just be diagnosed, how do we navigate this?   That’s the first module.  Then modules two, three, four, and five are all the most common issues that happen while you’re going through your medical treatment.

Those are things like managing your physical symptoms, things like pain, nausea, fatigue, even though they are physical symptoms, we know there’s a really strong relationships between how you’re going emotionally and exacerbating those physical symptoms.  Some of the times, those strategies you use, there’s a good solid evidence base for reducing pain symptoms, purely through using some psychological strategies for example.  That’s where we come in with that second module.

Then the third module is on managing emotional distress.  That’s some of the issues we talked about earlier, about anger and anxiety and depression and fear and worry.  It’s been told the strategies on managing those.  Then the fourth module on managing things like body image concerns and changes to the way you see yourself, with your identity.  Even though people might have always grumbled about having to do the school drop-offs and being the taxi driver to their kids, when they’re going through treatment, they might actually suddenly feel upset that they’re no longer able to do those roles because of feeling so fatigued and whatnot.

We provide strategies for managing those sorts of issues.  Then the fifth module is really on managing those changes to the social support network we were talking about and the impact on partner and the impact on children, as well.  Those topics that we mentioned earlier.  Then the six and final module is what to expect as you transition out of the treatment and into what we call the survivorship period.  What are some of the unique challenges that might happen in that stage?   Things like managing the fear that the cancer might come back, that’s a really commonly raised one that we hear about and tools to help people manage that as they go through.

Joe:                 Fantastic.  What’s your favourite technique or strategy out of Finding My Way?

Lisa:                 That’s like asking me to choose what’s my favourite child.  They’re all important.

Joe:                 There’s always one you love the most.

Lisa:                 No, there’s not.  You’re not catching me out.  I think it really speaks importance that to get through cancer treatment, you really need to tackle all of these things.  It’s a bit like a stool.  Imagine a three-legged stool.  As soon as one of them is actually starting to get a bit wonky, the whole stool become unstable.  You do need to be trying to look after your emotional, your physical, your social wellbeing altogether while you’re going through treatment.  You will get better medical outcomes because of it.  We know that people stick to their treatment better, they stick to it and attend to all of their appointments like they’re meant to.  They have less severe side-effects when they’re going through it, if they can actually get some of these strategies on board.

Joe:                 Cool.  I’m still going to put you on the spot and try to choose one.

Lisa:                 The one module out of all of them?

Joe:                 Yes.

Lisa:                 I think there are two.  Can I narrow it down to two?

Joe:                 Perfect, let’s do it.

Lisa:                 Out of the two, I would say if you could get the second module on manging your physical symptoms and strategies on board to help to reduce the severity of those and then the module three on managing the emotional distress.  I think if you had to start with two, those would be the two critical ones to start with.  Then the rest will support and build on that.

Joe:                 Okay, perfect.  Lisa, if someone wanted to find Finding My Way, what would you do?

Lisa:                 Yes, you just have to go to the website, and that’s: Findingmyway.org.au.  Finding My Way is all one word.org.au.  You can also find from the Cancer Council an essay on their website.  There’s a link to it.  I think the most direct way is just to go straight to: Findingmyway.org.au.

Joe:                 What a fantastic resource.  Thank you so much for your time, Lisa.

Lisa:                 Thank you.  That was great.

Look, I’m a huge fan of adding something new to your life after cancer, something that means the world to you, something that you really care about.  That’s why I have so much in common with Dana, she took her energy and she’s channeled it into becoming an advocate for young adults who had cancer, for cancer survivors and their caregivers. Here is what we cover in this conversation:

The Dragonfly Angel Society

Dana Stewart (Cure Today)

Episode 026: Stand Up For Your Rights

Joe:                 Well, Dana, thanks so much for joining me.  I really want to go back to if you had a time machine and we were to go back to this crazy time when you found out you had cancer, how did you react?  What went through your mind?

Dana:              My very first thought was, I never thought I would get it.  I feel naïve saying that, but I was 32 years sold.  I really had no family history.  For me, it was like for everybody, it was a massive shock, but I was in that initial denial, this can’t be happening, this would have never happened to me.  I know everybody says that, but it was nothing that I ever planned on happening, unfortunately. 

Joe:                 Yes, absolutely.  Your family and your friends, how did they react?  Did they support you in a way that you wanted to be supported?

Dana:              Absolutely.  I think everybody shared in their surprise and denial, if you will, like I did.  When I originally found my lump, I unfortunately didn’t act on it immediately because I had that mindset of, I’m so young, nobody in my family had breast cancer, I’m sure it’s nothing, I’ll just go about my life.  The next time I see my doctor, I’ll have it checked.  When I had it checked, they really weren’t worried, it didn’t feel like cancer.  Everybody was status quo.  Then when we started going down that road that it really was cancer, the good thing is, after my friends and family got over that initial shock,

I was blown away by the support I received.  You find out who your friends and family really are.  It was pretty amazing.  Actually, it’s what got me through because I didn’t get a lot of the crying, they wouldn’t let me be the woe is me.  They were like, fine, we’re going to fight this with you.  It was an incredible journey for them to be with me on.

Joe:                 Yes, that’s so fantastic to hear, Dana.  Even if you have those people who are really close to you and they’re really supporting you through it, it can still be really tough to deal with emotionally and mentally because stuff like in between treatment and you’re waiting for results and to hear from your specialists.  Was there anything that helped you stay on top of it emotionally and mentally?

Dana:              During treatment, I found that I was on auto-pilot.  I had my list of appointments, treatments, my surgeries, everything.  I’m kind of a planner.  As long as I had my list of here’s what I have to do, I worked with my nurse navigator on that, I felt pretty comfortable that I could make it through.  Like I said, I kind of turned on autopilot, so the emotions were kind of suppressed.  For me, it was let’s just do everything they tell me to do and let’s get this done and move on with my life.  That was, in my opinion, the easy part.  It was the aftermath for me that was a lot more difficult.

I allowed myself to feel the emotions when I was done with my final chemo treatment.  That’s where it really got tough for me more so than the treatment itself.  One of the big things that I… that I prayed that the cancer isn’t going to come back.  Nobody understands this.  Threw that on a piece of paper and was allowed to just get it out there.  The paper never judged me.  I think that was probably one of the best tools that I ever used to get through.

Joe:                 Yes, that’s fantastic.  Was that like a diary that you had?  Would you write in it every day?

Dana:              Yes, not every day.  I wrote in it a lot and I also kind of used it to keep track of my journey.  Today, I went to the doctor and we finalised my surgery.  I decided to go with the mastectomy.  Here, were my thoughts why I did that.  Then one of the big things I did was in the back of it, I printed out small pictures of family and friends and trips and all of this stuff that I had done before my treatment started and put a little collage together.  I remember titling it: Why am I doing this?  Chemo is hard.  Making these surgery decisions to remove parts of your body is terrifying.  I had to remind myself, why am I doing this?  What am I doing?  I put all of that together and I would go to the back of my notebook and I would look back and be like, because of these people and these things that happened in my life and that’s why.  I wrote in it a ton and I carried it with me to every appointment.

Joe:                 Yes, that’s fantastic, Dana.  I really agree with you, this having a visual cue, having this reminder of what you’re fighting for.  That’s really powerful.  Did you come up with it yourself?

Dana:              Yes, I like to do that visual/creative kind of thing, like scrapbooking and things like that.  Something that I knew if I had that with me, I would stay on the course.  I loved to write, and journaling has always kind of helped me.  Just having that notebook with me was almost like my version of a little kid with a teddy bear.  It just was very comforting to have that where I was going.  It was there, it was my safe place.

Joe:                 Yes, that’s fantastic because it also gets all of these worries out of your head and out into the real world.  On the paper, whatever it is, but it’s out of your head.

Dana:              Exactly.  That’s where it needs to go, otherwise, it bottlenecks up there and not good.

Joe:                 Yes, absolutely.  Dana, you mentioned that it really hit you emotionally when you finished treatment.  What happened then?  Why do you think it worked out that way?

Dana:              For me, I don’t bottle up my emotions, per se, but I was in that fight mode.  Looking back, in my mind, I was like, I don’t have time to worry and be fearful.  I have to go through chemo.  I have to decide what kind of surgery I’m going to do.  The big thing was, I have to hope I live and make through this.  I have cancer.  I have no idea what’s happening with it.  You hear the word, you think you’re dead on Tuesday.  In my mind, it was just, emotions, I’ll worry about them later.  Looking back, I kind of wish I wouldn’t have done that.  I kind of wish I would have gone through the process as it was happening.  For me, I bottled it up, I had my last chemo.  I had seen doctors every week to every three weeks.

I was finished with my last chemo treatment and they were like, “Hey, cool, you’re done.  Great.  We’ll see you in two months.” I was like, “What just happened?” I say I crashed and burned.  I had a complete meltdown, couldn’t stop crying.  It all flooded in at that moment what had happened to me for the last six months.  I think that’s why the emotional toll was so great for me because I just didn’t have time to do it when I was trying to figure out, how was I going to beat cancer.

Joe:                 Cool.  How did you get through it?  How did you get through this really tough time?

Dana:              I talk a lot.  I talk to a lot of people.  I actually saw a therapist.  I know sometimes people are like, I don’t want to do that or that must mean you’re crazy.  I tell everybody, go talk to somebody.  Talk to a professional.  Talk to somebody who’s not a family or a friend, who’s going to automatically be like, you’re going to be okay, everything’s okay.  You need to hear from somebody who really doesn’t know you or just is a professional in the situation saying, alright, here’s why this is happening, here’s what you can do to get out of it, and yes, right now, you need to mourn the situation.

I found that going to speak to somebody.  Quite honestly, I still talk to somebody today, helped me tremendously break down what was happening, because I didn’t understand it.  I was like, I should be so happy.  I’m done.  Everybody wants to celebrate.  This is so great, and I’m miserable.  Going and talking to someone, it was a gamechanger.

Joe:                 Yes, that’s fantastic, Dana.  I think that’s so brave of you because I guess I’m speaking for myself here, but probably for many of us, it doesn’t really occur for you to go and see a professional, right?  It’s like it’s cancer, it’s supposed to be tough, right?

Dana:              Right.  That was the thing, too.  My oncologist was the one who told me.  He was like, I think you just need to go and talk to somebody.  I was like, about what?  It just doesn’t click.  I’m like, what am I supposed to talk about?  Then when I went through the process, I was like, okay.

Joe:                 Yes, exactly.  I think it’s really great, in many ways it’s kind of like a stranger on a train.  There’s no filter, there’s clearly no agenda, you can just say whatever you want, right?

Dana:              Exactly.  It goes back to that whole judgement thing.  If your family friends – good family and friends are not going to judge you – but you’re still not going to maybe open up as much and tell them, I’m so afraid that I’m not going to live past the next year.  I would dabble in that a little bit with my parents or my friends.  Like, no, you’ll be fine.  It’s like, you don’t know that.  You don’t know how I feel by saying that.  Going to somebody, like you say, a stranger on a train, they’re not saying, “Don’t think that”, they’re like, “Here’s why you’re thinking that.” It helps break it down and you’re like, okay, cool.  I’m really not crazy, these are normal feelings.  Excellent.  That helps.

Joe:                 Yes.  During that time, both during treatment and after, it’s so hard for not only yourself but also for the people close to you.  I know you’re really close with your mum.  It’s really hard for them to watch you go through cancer.  Like, in your experience, what are some of the biggest challenges for the caregiver?

Dana:              That’s a good question.  Honestly, I think they’re some of the most forgotten people in this whole thing.  Granted, the focus has to be on the person going through it, but the caregivers are needed and they’re those rocks that we need.  Their emotions and everything are pushed aside.  Like, we don’t want to hear it, I don’t care that you’re upset today.  I just had a mastectomy.  You are feeling worried, I don’t really want to hear it.  I went back and forth with my mom and dad, mostly my mom was my caregiver.

We struggled a couple of times because she would want to tell me her emotions, like, I don’t want to hear you saying you’re going to die, you’re going to live, you’re going to be fine.  I was like, I don’t want to hear you say that, I don’t want to hear that you don’t agree with what I’m saying.  We would butt heads a bit because it was hard for me to process her emotions because I couldn’t even process mine.  Then she had nobody to talk to because none of her friends had kids who were going through cancer at that time.  She was just like, I have to support my daughter, and nobody can support me.  We talked a lot about that, especially after I was done.

One of the things that my mom and I agreed about, right after I had my crash and burn after treatment was, we’re going to agree to disagree.  She’s going to feel this way, I’m going to feel this way.  We’re both just going to realise that’s what’s happening.  It was a lot better than us trying to be like, dissecting each other’s feelings and trying to understand what we couldn’t understand.  The caregiver situation is very interesting to me now that I’m so far out and seeing it more.  They’re like the forgotten people.

Joe:                 Yes, that’s such a great way of putting it.  They really are the forgotten people.

Dana:              I feel bad saying it because we need them.

Joe:                 Yes, exactly, because really the way I see it is, obviously, like you said, the whole focus in on the person going through cancer, but when you’re the caregiver, you’ve got not only to be the rock and support the person who’s going through it, but you also have to try to maintain some sort of semblance of normal everyday life.  You have to still try to go on and show up and be normal or whatever that is, right?

Dana:              Very true, yes.  Exactly.

Joe:                 What sort of advice would you have for someone who is a caregiver, for someone who – what should you do to support someone through cancer but also to support themselves and to take care of themselves, as well?

Dana:              Good question.  I’m not sure I have a 100 percent answer, but when you support the person going through the cancer, I don’t know how to say it without sounding like a real awful person, but you have to make sure that their emotions, what they’re going through in that moment is the focus when you’re talking to them.  Just let them talk it out, don’t fight what they’re saying.  If they’re telling you, “I’m terrified the cancer is going to come back and I’m so worried I’m going to die.” What didn’t help me was, no, no, no, you’ll be fine. 

Okay, I’m hearing you, that must be so scary, tell me that at any time.  I’m here to listen.  I think just accepting what that person is saying and being there to just be their sounding board because both of you have no idea what to expect in this whole thing, so trying to challenge back feelings, at least for me, didn’t work.  The other thing is, I would say, take care of yourself, find somebody to talk to, find a friend, find a professional, make sure you’re still taking care of yourself.  It’s so easy to forget yourself when you’re worried about your sister, your husband, your daughter, whoever, your friend.  I think that just reminding, as a caregiver, selfcare, you need to get your rest, you need to talk.  You need to go exercise, you need to go do your stuff, too.  You’re as important to yourself as that person that you’re caring for.  It’s a very tough place to be, it really is.

Joe:                 Yes, so true, Dana.  Look, I really connected with your article on how we need to focus about living stories, they’re so important.  That’s something that nobody really talks about.  Can you share your perspective on that?

Dana:              Well, the way I was thinking about it was, I feel like you get so caught up in cancer, death.  Nobody sees anything in between and I don’t mean to be negative, but a perfect example of it to me is when I was diagnosed, my grandpa was 80-something at the time.  He was around in the early days, where you were diagnosed with cancer and you were dead.  I was diagnosed with cancer, and we laugh about it now, it’s not really that funny, but I was like, I’m convinced, I was diagnosed on a Tuesday and grandpa thought I’d be dead by Saturday.  He was just having a meltdown.

I’m like, guys, it’s not a death sentence.  Let’s focus on the living things and things that are going on in these everyday stories.  This instead of worrying about it.  I stink at it.  I’m so fearful half the time that my cancer is going to recur and I’m not going to live long enough to do anything.  I was diagnosed when I was 32.  I was terrified I was never going to make 40.  I just think, at least for me, I got so hung up on stuff like that, you just miss out on everything else.  Cancer is not a good thing by any means, but there are things that awaken in you, to go and do what you want to do.  That’s the perspective, that’s taken me, in all fairness, a really long time to figure out.

Joe:                 Absolutely.  We hear, you’re right, we hear all of these so negative stories about cancer, about death and dying, and about all of this negative stuff that really isn’t supportive.  Like yourself, I wanted to hear the positive stuff.  I wanted to hear the stories that let me know that there’s a light at the end of the tunnel.  I wanted to know that you could overcome cancer and have a life beyond that, you know?

Dana:              Exactly.  I think that’s a really hard lesson to learn.  Again, in the instruction book that doesn’t exist, nobody tells you that.  Nobody tells you that.  It’s so hard to figure that out and see that it’s potentially not a death sentence.  Whether you’re stage one or stage four, in my opinion, it doesn’t really matter.  It doesn’t mean that everything stops today.

Joe:                 Yes, absolutely.  If you were writing the survival manual that doesn’t exist.  Especially if you had a chapter for young adults because that’s a real area that is probably overlooked again.  What sort of advice do you have for younger folks who are forced to confront cancer and it’s the last thing they have expected, how do you deal with it all?

Dana:              That’s a big question.  I’ve said it a couple of times, so I was 32, I was single, no kids.  I feel like in the culture today, when you think of cancer and you think of diagnosis, you think, like, my grandma, my uncle, older people.  At least, initially, that was eight years ago.  I was like, young adults, they are the forgotten people, we’re not the childhood cancer, we’re not these older adults, one in two who are going to get cancer in their lifetime or whatever it is.  We’re in the middle that nobody wants to think about, and nobody expects to get it.  That, to me, is almost the biggest struggle.

My advice would be, this is so easy to say, and I know when I was diagnosed, I didn’t want to hear it, but it doesn’t mean that everything is done.  It doesn’t mean that you can’t go and do whatever you want to do.  It also doesn’t mean that you just have to listen to a doctor who’s going to tell you if you feel a lump or you don’t feel well or whatever the case may be, that you’re fine, you’re too young, don’t worry about it.  I’ve heard those stories before too and that always just sends me over the edge with young adults facing cancer, because I know many people who are kind of brushed off, like, no, you’re too young.

To me, at least even at the beginning, fight for your body and make sure you’re getting the care and the treatment from medical professionals that you think is right for you, and don’t let them tell you you’re too young.  I’ve heard it, people have heard it.  If you’re already diagnosed and you’ve hit that point, what helped me was, I had a bucket list of stuff I wanted to do immediately that I refused to wait for anymore.  Not because I’m telling everybody, if you have cancer, that’s it for you, but use this as your wake-up call to go and do.  Don’t do the waiting, don’t wait around and just, someday I’ll do it.

Just go do it, whether it’s something as silly as, I don’t know, being a tourist in your own town to taking that trip that you always wanted to take.  I feel like people just get so hung up on, you know, I got cancer at a young age, so that’s it for me.  It doesn’t have to be.

Joe:                 Exactly.  I know that it’s such a cliché, but cancer was such an incredible wake-up call.  It made me realise that, yes, there is no time like now.  The past is gone, the future is completely shrouded in this unknown.  The only time to live your life is right now, isn’t it?

Dana:              It’s so true.  I don’t like to give cancer credit for anything because it completely stinks, and it can just screw up your life plans pretty quick.  It can be a wake-up call, that you can turn into a positive and that brings me to another thing that I did that was an amazing little adventure.  One of my oldest friends, she’s about six years younger than me, I’ve known her since she was born.  I was her babysitter, we’re like sisters.  She was diagnosed with breast cancer two years after me, which was absolutely ridiculous because I thought I took one for the team, thinking nobody else was going to be affected this young.  It’s not that common.  We went through it together.  I was done and then she was done and we’re like, do you know what?  We’re not going to waste any more time on anything.

She had come up with the idea, let’s do something, one new thing every single day for a year.  We called it life-it-up-365.  We did something new every single day for an entire year.  It was something as silly as learning to tie a tie, trying a new food.  Whatever the case may be, we each did our own things, some things we did together.  For that entire year, we did a new thing.  It was probably one of the most incredible things I’ve ever done, and I assure you, I never would have even thought of it had I not had cancer.

Joe:                 Yes, fantastic.  I love it.  Life-it-up-365, is that what you called it?

Dana:              Yes.

Joe:                 Wow.  That should be a website.

Dana:              Well, we had started a Facebook page.  She had gotten the idea from a lady that she had seen speak that had done something similar, and then we kind of did it and took our own twist onto it.  We always keep saying, we’ve got to keep this going.  Then life interjected again.  Yes, we need to restart that up.

Joe:                 Yes, for sure.  I know that one thing that comes up for every single person who went through cancer is obviously the fear of cancer coming back.  I always get that before my regular check-ups.  How do you deal with it?  What would you recommend to someone who’s going through it?

Dana:              I’ll be completely honest with you, I’ve struggled with it for a long time.  I’m eight years out and I still have fears.  I mentioned earlier, I still go talk to somebody because I am still fearful.  What didn’t help me, and this might help others, so it depends on the person, was a lot of people told me, that fear will go away and you’ll feel so much better in a year, two, three, five years.  It always sits with me.  I like to tell people, it’s okay if it doesn’t go away.  To me, it’s not the fact that it’s gone away, I’ve just gotten better with dealing with it.  Over time, I can just handle it better than I used to.  I think it’s normal,

I think it’s common.  I think it’s absolutely right to fear it.  Don’t let anybody tell you that you shouldn’t and that you’re fine, you should move on.  I gob ack to some of the other things that I talked about with you earlier.  I still do a lot of writing, I still talk to somebody, just getting those words out there to me is what’s helped so much more than just keeping it bottled up.  I tried bottling it up a year after I was done, I tried bottling it up four years after I was done.  It did not work.  I tell people, talk about it.  Don’t be upset if it doesn’t go away.  It may not.  It may always be a part of your cancer journey, whether you’re a year out, six months into your treatment, or twenty years down the road.  I think any of that is fine.

Joe:                 Yes, absolutely, Dana, do you know what?  Doing this podcast and I started writing a book, a lot of that stuff, in other words, doing something that is bigger than myself really gave me a better grasp, a better way of dealing with cancer, of dealing with life.  Did you in any way go through a similar experience with what you’re doing with the dragon fly angel society and writing your articles?  Was that similar in any way?

Dana:              Absolutely.  I was shaking my head as you were talking with what you have done.  100 percent agree.  Writing a lot and giving other people my opinion or feedback and then reading other people’s feedback or articles or listening to a podcast and starting my website: The dragon fly angel society.  That kind of kept me going, that kind of helped me get my feelings out there, get my fears out there, and I thought of newly diagnosed Dana.  I still do.

What would she want to see when she was told she had cancer?  I think back to all of the stuff I couldn’t find, like, didn’t know what survivorship was like, stuff like that.  That actually, over the last couple of years, to your point, I agree with you 1000 percent, that has helped me tremendously.  It really has.

Joe:                 Yes, that’s fantastic because I really do think that is the sort of stuff that really gives you the point of focus on something positive, something that is really like an outlet for emotions, for negativity and it allows you to look beyond – it allows me to look beyond my own fears and frustrations and stuff like that.  Dana, tell me about dragon fly angel society?  What does it mean to you?  How did you get started?

Dana:              When I was done with – well, I wouldn’t say that – when I was done with chemo and I had that initial crash and burn right after I was done, I kind of wanted to do something.  I volunteer, I work with the survival coalition and a couple of other organisations to just stay involved.  It helps to meet people.  I felt was still missing was, there was so little on survivorship.  I didn’t know if it was because nobody wanted to talk about it, like when they were done with their cancer treatment, they were like, peace out, I’m out of this realm and I’m not going back.  Or if people just couldn’t focus on it because obviously the most important thing is the diagnosis and the active treatment and getting cancer out of people’s bodies.  I don’t know.

I was just like, now what do I do?  Nobody can tell me, we’ve kind of been laughing about it, but there’s no survivorship book or things, I have no idea what I’m supposed to do.  I was thinking about it for a while and then my mom and I were talking a lot and we had talked about this whole caregiver person, as well, and the lack of resources for them.  She and I were just talking and like, we want to do something, but we have no idea what to do.  Then we were both like, what if we do something on survivorship?  What if we help people who are done and then throw their hands up and say, “Now what do I do?

What do their caregivers do?” That’s really how it got started because we just started talking about, what do we do?  I kept saying, I’m lost, I don’t understand what I’m supposed to do with my life and nobody has any information for me on how to be a survivor.  Then I would find resources here and three, and books that I liked, and ideas that I had.  We were just like, what if we just put all of those onto one website where we could tell people, hey, go here and if you like books, if you like websites, if you like writing or whatever the case may be, or you want to hear survivor stories, come to our website, we’ll put it all there and let you then choose your adventure.  I can’t give medical advice,

I’m not a doctor or anything along those lines, but I can get people these resources in one spot, then maybe I could make it easier for them than it was for me.  That’s how we got it started.

Joe:                 Yes, that’s fantastic, Dana.  I think when you were talking about what would you say to your old self, I felt that every step of the way, if I was thinking of when I was going through treatment, when the treatment is finished.  I feel like I found out about all of these resources that I’ve never heard about when I actually needed it at a particular time.  It’s so amazing, that I think that experience is almost universal, right?  We could have all went, why didn’t I know about this earlier?

Dana:              Exactly.

Joe:                 It’s fantastic what you’re doing and what you’re doing with your mum, because you’ve got the dual perspective, right?  You’ve got you, obviously you went through it, and your mum went through it with you and you bring it all together.

Dana:              Exactly.  There are some decent resources out there that either a lot of people don’t know about or maybe people just don’t want to hear about until they’re done.  Then at that point they just want a break from it.  Then they don’t realise, maybe they’re like me and they don’t realise, two/three/six months down the road, two years down the road, shoot, I really do need something.  That’s why we’re like, come to our website and we’ll help you figure out where you need to go and get that professional advice you need, or a website you’re looking for or something like that.  it just seemed like such a thing that I wish I would have had to get started.  There are a lot of really good resources out there that I just don’t think a lot of people know about.

Joe:                 Yes, absolutely.  Sometimes it’s just about connecting people to those resources.

Dana:              Absolutely.  You’re absolutely right on that.

Joe:                 If someone wanted to find out and visit your website, what would they do?

Dana:              All they’d have to do, if you go to the website, the front page is basically our story, so if you’re curious to know about how we got started.  It’s more so classifications, do you like websites?  You click on the website box and then you can see if you’re looking for breast cancer or general cancer or young adult cancer, or whatever the case may be.  Obviously, most of it is focused on breast cancer, that’s what I know best.  You can go to the website and click, and it’ll take you onto this group or organisation, you just build your road from there.

If you’re looking for books, if you’re looking for some magazines, survivor stories, it’s all literally on that front page and you just go to the initial website and then you can start your journey.  Like, choose your own adventure, if you will.  We kind of just put it all in one spot and then it allows you to go off to these other websites and organisations to find what you’re looking for.  It’s very easy.  Then we do some blogging.  We do newsletters.  We try to connect people through survivor stories.  Things like that.  All stuff that I wanted to see when I was done.

We’re always looking for new resources, new people to write for us, it’s just my mom and me.  That’s basically what it is.  I feel like it’s a starting point for a cancer survivor or a caregiver.  Either right when you’re starting your diagnosis, there’s plenty of information, but the focus is more so when you’re done with your active treatment, where do you go from here?

Joe:                 That’s really cool, Dana.  I love it.  Given everything that you know now, you’ve read all of these websites, you’ve read all of these books, you’ve obviously thought about it a lot, you’ve processed it from writing articles and your journal and everything else.  As a cancer survivor, what is the best advice that you could give to someone who has survived cancer and now they have to deal with life?  It’s a big one.

Dana:              Just be patient.  Let yourself feel the path.  Don’t just, I need to go to four websites and I need to write four journal entries a day.  Write if it feels good.  Don’t write if it doesn’t feel good.  Just give yourself a break.  People will be giving you advice left and right and telling you this, that, and the other.  If you don’t want to talk about your cancer anymore for a while, or you don’t want to deal with it and you don’t want to go to a support group, or you want to go and see somebody individually, or whatever the case may be.  Do it.  I feel like we get so hung up on, well, this person said I should do this.  This person said don’t do that.  This person said become a vegan.

This person said… just give yourself a break, listen to what your body and your mind is telling you and go do it.  Don’t stress about it.  If you never want to do anything with cancer again when you’re done, don’t.  I just feel like we get so hung up on what everybody is telling us we should do, what is your mind telling you, you should do?  If you want to talk about it daily in a support group, go do it, but I just think you’ve got to just let yourself follow what works for you and not what everybody is telling you to do.

Joe:                 That’s such a great point, Dana.  What inspires you to live your life in the best way that you can?

Dana:              A lot of it has to do with the fact that I feel like it was a wake-up call.  There was so much I wanted to do.  I had never been kicked in the butt, if you will, to get it done, for me, it was just, cancer or not, it was just, shoot, there’s all the stuff I wanted to do, I started making a list, I was like, man, whether I have cancer or not, I’ve got to get moving on this stuff.  That was like my wake-up call, my inspiration to – I’m not going to say no if I don’t want to say no, I’m not going to say yes if I don’t want to say yes.

It just… I got to press a restart button.  In a way, that was kind of cool.  I moved to a different state, I quit my job and started something new.  I don’t know if I would have ever done that, had I not gotten sick.  Now, it’s like a little adventure.  What can I do next?  What’s next on my list?  That’s kind of fun.  It was kind of good to have that wake-up call.

Joe:                 Yes, that’s fantastic, Dana.  What is next one the list?  Do you know?  Do you have some plans that you can share?

Dana:              I was telling you, I just took the biggest trip of my life.  I wanted to go to Australia my whole life and I finally just went three weeks ago.

Joe:                 Yay.

Dana:              Yes.  At this point, I’m kind of like, I don’t know what I want to do.  That has been on my list since before I got sick.  That took a lot of planning and a lot of saving, so I just did that.  Honestly, I don’t know what’s next.  I literally just lived the biggest adventure that I was hoping to live in my life.  There are more places I want to see.  I’d like to maybe write a book if I could, that might be a next on my list.  I really want to keep the survivorship movement going and continue to help people who face the challenges like I faced.  I’ve said it many times, I’ve struggled immensely with survivorship and the emotions.  I was diagnosed with PTSD because of it.  I really had a rough go.

I feel inspired to – maybe what’s next for me is kind of getting a little bit more of that out there and helping others who experienced the same thing as I did.  If I can get more awareness out there, I’d like to do that, too, I think it’s so important that people – maybe there’s nobody like me, maybe there’s a lot of people like me.  You’re not the only ones.  It doesn’t have to stink.  It’s a rough go.  It’s definitely a rough go.  There are good things you can do to get through it.

Joe:                 That’s fantastic, Dana.  Thank you for being yourself and for putting yourself out there.

Dana:              Sure, thank you.  Thanks for letting me chat away.

Joe:                 No, I love it.  Thanks so much for your time.  I really appreciate it.

Dana:              You got it.  Thanks again.

Simple truth from Matthew Zachary of Stupid Cancer – know your rights and your choices in the quest to crush cancer. Matthew is a true inspiration, with stupid cancer empowering young adults to deal with cancer on their terms! Here is what we cover in this conversation:

The Stupid Cancer Show

Matthew Zachary on LinkedIn

Stupid Cancer

Joe:                 Hey, Matthew, listen, first off, I want to start with, what was life like before cancer?  I know this was a long time ago, so you have to dig up in that memory.  What was it like, man?

Matthew:         Fabulous and cancer-free.  You were invincible.  You could do anything you wanted, there were no obstacles ahead of you, blue skies, only optimism.  That’s a good thing.  You’re supposed to have all of that when you’re 16/17/18/19/20.  You need that invincibility to want to take on the world.  That was my life.

Joe:                 Yes, it’s such a fantastic point you bring up, invincibility.  You know what, now that I think about it, it really was like that because nothing could happen, you were almost living in this bubble.

Matthew:         It’s a good bubble.

Joe:                 It’s a good bubble, yes.

Matthew:         There are bad bubbles, but it was a good kind of bubble.

Joe:                 Yes, absolutely.  Then you find out, they tell you you’ve got six months to live.  What was that like?

Matthew:         Yes, the last thing on your mind is getting sick when you’re young, let alone getting devastatingly sick when you’re young.  It was, to say, surreal is an understatement.  It was just denial.  It wasn’t possible that this could happen to someone like me, at my age.  It’s not exceptional for someone to think that way in general, but when you’re just a kid and you get sick and they say you probably won’t be here in six months, how do you process that?  It’s just denial.  You’re in absolute consistent denial.

Joe:                 Did you come out of that somehow?

Matthew:         You never really come out of it.  I guess just by not dying it helped the narrative that I wasn’t dying and then you keep on hoping that you don’t die.  Then eventually time moves on and you figure out that you need to live instead of worrying about dying.  That’s the transformation.

Joe:                 Yes, exactly.  Do you know what, Matthew, I don’t know about you, but I have so much advice to share with the old me who went through what was I was going through, through cancer and going through treatment, because I really had no clue what was going on.  If you had a chance to do something differently, if you could sit down with your old-self, what would you tell him in retrospect to just make it easier for yourself?

Matthew:         One of the most important things to me these days is to guarantee if you’re sick, you know your rights and you know your choices.  I would go back to myself 22 years ago and give that version of me his rights and his choices.  All the things you should be told right now, that you’re not going to find out anyway.  Being able to guarantee that someone diagnosed today is made aware of their rights and choices is the most important thing because you don’t know what you don’t know, your life is in jeopardy.  In my case, I was facing chemotherapy that would have put permanent nerve damage in my fingers and toes.

At the time, I was an aspiring concert pianist and I couldn’t play because of the tumour, but if I had any chance of living, I’d rather be able to rehabilitate myself and play again, versus going on a chemotherapy that would have given me this devastating side-effect.  If I had lived five years and died but being able to play piano, that was more important than living 80 years and not being able to play the piano.  I was not made aware of that choice, except that I had an uncle who was a geneticist that nudged into my decision-making and helped me make a better choice that was better for me.

Not everyone has a miracle uncle who knows these things that swoop in and tell you these things.  If I had to go back and tell myself, I would have told myself what my uncle told me, to just don’t do this, you’re going to be fine.  As long as you make a decision that’s the best for you.

Joe:                 Yes, you’re so spot on.  There are so many things that you have to take into account.  I was lucky because I was told that if you go this chemotherapy way, it might affect you playing your guitar and if you go this way, it might affect your fertility.  You have to know these things otherwise you’re screwed, right?

Matthew:         It just comes down to choice and it’s hard.  22 years ago, there was no internet.  I had nothing to look through.  Today, there is way too much internet, so you don’t quite know what to trust.   We’ve come 360 degrees back to the same confusion out there.  Whether there’s nothing to know about or too much to know about, it just comes down to who is going to help you figure that out.

Joe:                 Yes, absolutely.  One the other side of it, in terms of people who help you through it, friends and family, a lot of folks I go to, they have people who disappear from their life for one reason or another throughout this whole cancer thing.  What was that whole experience like for you?

Matthew:         Any one part specifically then, or just in general?

Joe:                 Yes, just in general, friends and family who maybe you expected to be there, and it didn’t work out that way.

Matthew:         My personal experience may not be that of other people, but I’ve heard that this is not uncommon what happened to me.  People go either this way or that way, they never go right towards you or right behind you.  They’re either full on, I’m here to help, whatever you want, whatever you need.  My parents did that, my brother did that, my family did that.  My college friends, my high school friends, some of them just bailed.  Can’t deal with it, I’ve got to move on.  I’m going to grad school.  Living their life, sorry, man.  That was painful.

That they just summarily rejected me.  I was too much of a burden for them to be sick and complaining all the time.  I didn’t really focus on that.  I focused on the people who came to the hospital and spent every waking hour talking about me and talking to me and sending cards and flowers.  Again, I didn’t know what to expected.  I didn’t wake up saying, “I can’t wake to get cancer to see what my friends do.” I just rolled with the punches, like, fine, you don’t want to talk to me, I’ll talk to these people now because they’re the ones that care about me.  I guess it was unexpected that the ones that did flee were the ones that fled, because some of them were the least likely I would have thought to be behave that way.

Joe:                 Yes, it’s interesting.  I guess, for me, like you said, also, when I was going through the experience, I was in the zone, but I guess after cancer, I looked at it and I went, these three close friends I had, they just disappeared completely, and I was trying to rationalise it because it didn’t make sense.  Why did it happen?  Do you know what?  I still don’t have a good reason.

Matthew:         Yes, what are you going to do?  You’ve got to cut your losses when you.  It’s going to hurt, you didn’t expect it to hurt because you weren’t expecting it to even be there in the first place.  It is my hope that people who get sick have lifelines and have handrails and guardrails and support.  Some don’t, some do.  It’s regrettable but sometimes you’ve just got to go it alone.

Joe:                 Yes, that’s it, man.  The other thing that all of us go through is having the fear of cancer coming back, especially as you get closer to every check-up, you start thinking about it.  How do you deal with it?  What sort of advice do you have for someone who maybe is going through it right now?

Matthew:         Yes, we call that, “Scanxiety.”

Joe:                 That’s a nice word.

Matthew:         I didn’t make that up.  That was told to me.  Scanxiety is the never-ending fear that it’s going to come back in some way, shape, or form.  Or for those people even living with it, that it will get worse than it would get better.  Metastatic cancer is a really big deal in what we do here at Stupid Cancer.  I like to use the expression: Step into the pain.  I got that from a friend of mine and I’m not really original, I just recirculate.  Stepping into it, owning it, it’s going to happen, you cannot control the outcome of what’s going to happen.  As difficult as it sounds to just do that, what choice do you have?  You either worry about it and panic and get into a disorderly array of stress, or you just say, “This is going to happen, and I will deal with it when I get an answer.”

Joe:                 Yes, that’s a great way to look at it.  That it’s separating what you can control from what you can’t control.

Matthew:         There are multiple kinds of Scanxiety too.  I’m now 22 years now from brain cancer and I still get headaches and my brain is like, “Is that cancer again?” Probably not but it’s still there, the trigger never goes away.  It’s been owning the trigger.  Yes, time makes that a whole lot better.  I’m not saying that if you’re a year out, it’s the same as being 20 years out.  It just really is a perspective on how things you can control, things you can’t control, and just owning the unknown.

Joe:                 Yes, exactly.  Matthew, I wanted to ask you about that, as well.  Like, doing this podcast and doing my writing and all of that sort of stuff, it really helps me to find a new meaning, almost like an additional meaning of things that I do with my life that really take me away from what you call Scanxiety, is really being able to focus on something bigger, something positive, something that is the way that it is bigger than myself, because that helps me put cancer in its place.  To stop worrying about it and worrying about it coming back.  Do you have the same thing with what you’re doing with similar things, to what you’re going through with Stupid Cancer?  Just things that you do?

Matthew:         I think it’s important for people to find an anchor in their life that helps ground them.  That was a really bad metaphor, but my whole point is that if you have a hobby, a friend, you like to write, take pictures, don’t let that fade away in the face of your challenges.  I happen to be a concert pianist, I was sick, I couldn’t play, but I was able to just sick down every day for an hour and just do anything.  My fine motor coordination wasn’t working but I could still play a little bit.  That was all I needed to stay grounded.  I know today in social media, there are plenty of blogs and people journal, and there’s so much more people can do these days than you could back then.

Express yourself, share your story, those are not monotonous platitudes to talk about.  Those are authentic ways to do that.  At Stupid Cancer, we advocate for people to express themselves, share their stories, talk about what they’re going through, connect with their community, meet people like them in their isolation and take ownership of the fact that they’re a part of a huge family of people that care about them and won’t judge them.

Joe:                 Yes, not being judged, that’s fantastic, man.  Both times, you went through a few name changes, how did that come about and what were those changes like?

Matthew:         I believe in something called the minimally viable product, which is when you don’t know how the crowd is going to respond to you, but you let the crowd determine your path.  The best thing I tend to you is, many people might remember that FedEx used to be called Federal Express.  People just started calling it FedEx for short because we’re lazy, so they legally changed their name from Federal Express to FedEx.  Now we don’t give it a second thought.  Following the crowd, letting the crowd carve the river for you to flow through.  I had an idea for a couple of things when it started.

It worked really well but at the same time, the crowd decided that Stupid Cancer was what we were going to be known by, known as, and known for.  After all the weird names we went through in the beginning, which held historical credibility.  In the wash, the community decided what we were going to be.  That has been the best learning curve ever in growing a business.

Joe:                 Well, that’s really amazing.  What are the people telling you today?  What are they saying?  What is the direction that you think it’s going to go to now?

Matthew:         We’ve spent the last 11 years yelling and screaming that young adults are treated unfairly, that we’re invisible in the cancer spectrum, that we are largely ignored in clinical trials, the statistics and mental health and psychosocial information, the patient navigation and doctor physician relationships, early detections, survivorship, metastatic.  All the things that exist for the bulk of people who have cancer, over 50, do not exist at all in any related age-relevant manifest or the Gen X/Gen Y/Gen Z communities.

Which are millions of Americans.  I’m not dismissing the finite nature of how small the population is, but we’re talking about millions of people.  After yelling for 11 years, the world is finally listening.  What is it that they want us to tell them?  The community wants equity, equality, parody, justice, dignity, that we are all treated age-appropriately, we’re given the same access, the same rights, the same age-appropriate care, and incentive on what makes young adult cancer difference.  We’re not 80, we don’t care about our summer homes and Medicaid.  We don’t care about out bottles and our toys but dismissing the value of there being different age groups, we’re not better or worse, we’re different.

Those differences need to be part of medical care and part of models of care.  That’s what we’re waiting for.  That’s what the crowd is telling us.  To get some policies in place, to get fertility preservation mandated, get age-appropriate mental health care in place, help me navigate how to talk to my children, how do I start dating again?  What do I do with my career?  My insurance is terrible.  Things that are pretty crappy when you’re well are just made worse when you’re sick and even then, it’s not being managed appropriately to help a 22-year-old get through cancer on their terms.

Joe:                 Yes, exactly.  I’m going through IVF process right now with my wife.  It’s interesting because chemotherapy has kindly killed off the cancer, but it’s also killed off most of my sperm.  It’s an interesting and pretty stressful process.  I guess like a lot of young adults, that’s something that you may not necessarily even consider when you’re going through treatment, right?

Matthew:         Well, the narrative over the last 11 years is: Well, why young adults?  Why are you so special?  It’s like, we’re not special, we’re different, which is what I said before.  How are you different?  Do I really need to tell this to you?  We start with fertility, when you’re six or sixty, that’s not an issue.  Your right to be a mom or dad one day is infringed upon when you get cancer.  It is up to the doctors to tell you, you should bank your sperm, freeze your eggs and here’s a way to do it that’s relatively inexpensive.

Or, hey, your insurance covers this, you should do this right now if there’s time.  The fact that that conversation doesn’t really happen that often is part of the frustration that drives the narrative of young-adult cancer.  It frustrates me.  If you were to tell me that your doctor didn’t have you bank your sperm before your treatment started, that would infuriate.  If that is true, allow me to be infuriated because that’s a liberty that you have to know about.  Going back to choice, if you are not made aware of that choice, plus your doctor didn’t tell you that, and you didn’t have a peer to talk to, to say, “Hey, you should tell your doctor about this.”

Then who is going to help you make that choice?  Who is going to make you aware of things that you could never be aware of before?  IVF, I have kids, they’re IVF babies.  It costs and arm and a leg, should you really have to pay that much money to be a dad?  No.  That’s what makes this different.  That’s what makes this relevant and important.

Joe:                 Yes, exactly, that’s such a great point.  I really want to hit on something that you really keep on bringing up over and over again, is choice.  It’s having the choice to do something.  You know what, like I think I’m probably speaking for everything who has gone through cancer, you really a lot of the times you feel powerless, you feel like you’re not in control, you don’t really have choice, not only about treatment, but choice over appointment time.  You don’t have choice about the specialist.  You actually do but you don’t realise it, right?

Matthew:         A lot of times, probably too often, you’re at the mercy of what you’ve got.  You’re at a point of insanity and panic and everything is all fuzzy.  Where it’s hard to make objective decisions.  If you’re terrified and you want a second opinion, you might be scared to get a second opinion because it could be worse.  You’re stuck with what you’ve got.  It always helps to have a helping hand in the form of a peer or a community that has been there.  Whether you’re at a major cancer centre or in the middle of a community with 50 patients and 3 doctors, your right to have a community, peers like you to help you fill in those blanks and those gaps is even more important.

The social aspect of going through cancer is just as relevant as the medical aspect of going through cancer.  If you had been introduced to other young adults with cancer when you were diagnosed, we would have probably told you, the collective we would have said, “Hey talk to your doctor about getting your sperm banked because they’re probably not going to tell you about that.  Or you might be lucky to be told that.” You’ve got to think, what is in the mind of that doctor?

Man or woman, or carer, where it doesn’t occur to them that you’re in your fertile years and they know chemotherapy can create infertility, that is a known medical data point for 30 years.  I keep coming back to fertility because it’s so tangible.  It’s something that’s so tangible, it’s tactile, it’s infuriating and it’s the most relevant conversation that defines young adult cancer.

Joe:                 So true, Matthew.  All the amazing work that you put into Stupid Cancer, all those years.  I think you said at one point, I read about it, that after all of these years, you became an overnight success.  What made the difference?

Matthew:         It’s like, I never heard of you.  Yes, we’re the 11-year-old company that just made it big yesterday.  That’s really ridiculous, but I don’t care about that, as long as you know about us, whenever you know about us, that’s great.  We’ll drink the cool-aid and we’ll move on.  I think the ongoing confounding aspect of running a non-profit organisation is endless challenges and growing and scaling.  The need is never over.  You can’t reach 72,000 people every year the day they’re diagnosed.  It’s improbable.

The frustration is, how can we do a better job getting the word out through our existing survivor community, programs like these will enlighten people to know that we’re an organisation that is in a very unique space right now.  Coupled with the challenge that we’re few and far between.  You know, you go to Iowa community cancer centre, no offense to Iowa, there are not going to be a lot of young people there.  If you go to Sloan Kettering and B.  Anderson, you have the privilege of being able to go there.  Yes, they’ll probably put you in a bed in a ward with other young people out there because they know that’s important, but just finding out that you have a community is the most important thing for me for us to represent and stand for.

You need that handrail.  I talked about how when you want to buy a car, you research a car, you test-drive a car, you read magazines and other people’s reviews of cars.  No one hopes to go on some pharma drug one day, you don’t test pharma drugs just to see which one you’re going to get prescribed when you get cancer.  You’re entering almost a marketplace what you’ve never researched.  Who is going to be your Yelp?  Who’s going to be your Trip Advisor?  That doesn’t exist right now.

I think the role of every patient advocacy group in cancer is to try to play part of that role.  If we can be Yelp and you can be Trip Advisor and you can be Trivago and you can be Good Eats or whatever, yes, we are all trying to be that lifeline, that handrail.

Joe:                 Yes, exactly.  The lifeline to a person whose life has been turned upside down.

Matthew:         Yes.

Joe:                 Thank you so much, Matthew.

Matthew:         My pleasure.  My honour.  Good luck with everything.

Joe:                 Thank you.