Patient from Hell

Our guest this week has lived with a slow growing, incurable cancer for the past two decades. She tells us about how she has modified her lifestyle using nutrition as well as a combination of distraction and mindfulness to grapple with the mental challenges of uncertainty. She talks about the idea of “median survival statistics” and how a powerful essay by Stephen J. Gould helped her see those stats in a different light. She also discusses the evolution of treatment and imaging over her 22 years as a patient, and the powerful scientific progress that has been made during that time.

Key highlights:

About our guest:

Rowan Carlson is an aquatic ecologist who was diagnosed in 2001 with an incurable form of Non-Hodgkin’s lymphoma that requires repeated treatment. Thanks to her doctors who carefully timed her treatments and family and friends who supported her in a myriad of different ways, she continued teaching at the college level and conducting research abroad through 2019. Now retired from teaching, she gardens episodically, hikes daily, demonstrates monthly for climate action, and habitually writes scientific papers.

Key Moments:

7 minutes 50 seconds: I heard a nutritionist speaking to a group of cancer patients at a local wellness center. And I found that what she was recommending was so different from the way I ate that I thought it was radical. So I made appointments with two other nutritionists specializing in cancer patients, and all three of them were advocating the same healthful diet. They were advocating a plant-based diet avoiding red meat and processed meat and filling your plate with vegetables.

15 minutes 35 seconds: There’s a very powerful essay written by a famous biologist, Stephen J. Gould, and the title of that essay is “The Median Isn’t the Message.” He was prompted to write this essay because he had just been diagnosed with a very rare form of GI cancer, and he quickly dug up a medical paper and learned that the median survivorship of this cancer was 8 months. The essay describes how he dealt with this. He convinced himself  that he would live longer than that, and most people do live longer than the median. He lived for another 20 years and died from a different type of cancer.

17 minutes 24 seconds: What has really helped me since that first year after my diagnosis are two things. One is distraction. I distract myself by keeping very busy on projects that are larger than myself, for instance writing scientific papers and more recently working with three climate action groups. I find this work very fulfilling, and it does distract me, but you can keep yourself too busy and that can rob you of time with family and friends, which is also important, so I try to balance distraction with something called mindfulness. Mindfulness is the idea of living in the moment, and it’s been very helpful for me.

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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

Our guest is Jane Gutkovich who was thrust into the land of patient advocacy and navigation after her son was diagnosed with Epithelioid Hemangioendothelioma (EHE), a rare type of sarcoma cancer. Given the rare nature of EHE and after four different treatment plans from the four of the top cancer centers in the US, Jane had to turn to other patients to help determine her son’s path. Jane talks with Samira about the decision process for rare cancer patients with small amounts of available data, the role of the family caregiver, the power of patient advocacy and the evolution of patient communities.

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Key highlights:

About our guest:

Jane Gutkovich is one of the founding members of the EHE Foundation, and has served on the Board of Directors. Her responsibilities as Vice President of the Foundation included: furthering the foundation’s impact by securing strategic partnerships with relevant organizations, institutions, and individuals; raising funds to support key initiatives; and growing EHE awareness in the medical and research communities. She maintains a deep engagement with the EHE community and active member of our EHE Facebook support group, as well as through personal communications and meetings.

Key moments:

4 minutes 58 seconds: I remember driving in a car to the fourth doctor, and I look at my husband and I said, you want to bet that because there’s only one combination left that this guy will say yes to surgery and no chemo. Sure enough, that's what happened. The best sarcoma specialists in the country gave us totally opposite recommendations. What do you do? Well, you learn and you have to make your own decision.

8 minutes 26 seconds: One of my friends had this brilliant idea to launch an EHE Facebook group. It was launched in September of 2013 and was 7 or eight of us on in this group in the beginning. And I remember checking every day five times a day to see if anyone else joined. And every new person who joined was like, “Yes, we have another person!”  And when we had 20 patients in the group, I thought, “We're not rare!”  And by the way, today we have more than 2400 members in our EHE Facebook group from almost 80 different countries.

22 minutes 27 seconds:  We were all in it, me and my husband and my older son. I think he saw that there was a team to cover him. We were not always on the same page. Don't get me wrong, there were fights. But I think my son kind of decided that he cannot do better than I will do, than we will do, than this team will do. He took the position of:  I'll trust what you're saying, but it has to make sense to me. He was never like, “okay, whatever you say.” I had to present him with my rationale. But that's the kind of relationship that we developed after he was diagnosed.

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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

When we think of a cancer diagnosis, we focus on the physical ramifications of the disease. But a cancer diagnosis also leads to major financial costs. Today we are speaking with Rosie Cunningham, COO of Family Reach, about financial toxicity, health inequities and tips for patients and caregivers on how to navigate the financial landscape of a cancer diagnosis.

Key highlights:

1. Financial toxicity is driven by lack of transparency in the healthcare system as well as the complicated nature of cancer care

2. Health inequities drive financial toxicity and are deeply rooted in the healthcare system

3. Tips for patients and caregivers on navigating financial challenges during the cancer experience 

About our guest:

As COO at Family Reach, Rosie plays a pivotal role in the progression of the organization’s services, research, and collaborations. She launched the inaugural strategic planning process in 2019, and works closely with the team to ensure that all internal and external activity is aligned to push the mission forwards. She also oversees the organization’s content, programs, and impact teams, driving awareness of Family Reach as a data-driven thought leader and solution provider on financial toxicity. A strong believer that no one deserves the turmoil caused by a cancer diagnosis, Rosie applies her sales, marketing, and partnership expertise to guide Family Reach toward ensuring no family has to choose between their health and their home.

Key Moments:

6 minutes 30 seconds: 2/3 of people living with cancer are unable to work full time after a diagnosis. Of the families we serve 65% of them have lost over half of their household income. So before you even get into the web of healthcare costs, you’re already in crisis, unable to make ends meet.

9 minutes 30 seconds: People with cancer are more likely to file for bankruptcy, but beyond that, people who do file for bankruptcy are 79% more likely to die from their disease. So financial toxicity is not just a financial problem it is literally a life or death problem.

16 minutes 40 seconds:  Our mission at Family Reach, which is to alleviate the financial barriers that stand between a patient and their treatment, is rooted in health inequities. For 25 years we've served patients from across the spectrum who are unable to get to treatment because they can't afford it one way or another. Over the last decade, we as a cancer community have done a better job looking more closely at these inequities and charging ourselves to really challenge and understand the root causes and do better to close the gaps. At Family Reach what that has meant for us is to really hone in on low-income Black and low-income Hispanic Latinx patients because these two communities are most adversely affected by the financial burden of cancer.

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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

We are kicking off 2023 with the fabulous cancer survivor, healthcare entrepreneur and thought leader, Jennifer Hinkel. As a survivor of Stage III Hodgkin Lymphoma, Jennifer has a special interest in oncology innovation as a cancer survivor. She is passionate about using data to improve the lives of cancer patients, and also making sure that patients are aware and compensated for the use of their data.

Key highlights:

1. What advice would adult Jennifer give to her 17-year-old self about being diagnosed with cancer?

2. The importance and value of patient data

3. Building the bank for patient data

4. Henrietta Lacks’ cell line and its incredible impact on science relate to digital patient data today

About our guest:

Jennifer Hinkel is an oncology market access and health economics leader with experience in consulting, global pharma and biotech, health policy, and health care startups. She has held management and executive roles at companies including National Comprehensive Cancer Network, Roche UK, Roche Argentina, Genentech, and Caris Life Sciences. She is a Managing Director of The Data Economics Company where she leads commercialization of the Lydion Engine in life sciences and healthcare applications and is a Founding Partner at Sigla Sciences, a market access firm. 

Key Moments:

7 mins 22 secs: Walking through a portal. One of the things I recall most strongly is this feeling that I walked through a door, a portal to a different world. No one around me had seen that world. They didn't even know that that world existed. And it is not a super pleasant world, it's a world full of a lot of scary things. Although it's also a world full of like a lot of really smart people and people who are out there trying to be helpful and to make the experience better for people. I think that the most important thing to say would be: you might feel like you're the only one that's gone through this, but there are actually other people out there going through the same thing.

18 minutes 37 seconds: Getting compensated of your data

I philosophically believe that this is data that is generated by you, a patient. Yes, you plus an X-ray machine or you plus a doctor. Most of us don't walk around just spouting genetic sequences out of the air, but there has to be some science applied. But really that data is yours. It's pretty unique to you, and that should belong to you. And if other people are using it, especially if they're using it for a business purpose, I think you should get to share in that.

27 minutes 27 seconds: Story of Henrietta Lacks. 

This woman Henrietta Lacks, who had cells taken. And her cell line has become a mainstay of biotech research for decades and decades. Only recently it was recognized, that this woman was never really compensated for the contribution that her genetic material made to science.  I think that we will start to have that same idea on the digital data. Just because it's in a digitized format, I think doesn't make it any less personal or unique to us really. This data is just the output of your medical procedure or what your body produced.

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Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

Key highlights:

About our guest: 

Dr. Gabriel A. Brooks is an oncologist in Lebanon, New Hampshire and is affiliated with multiple hospitals in the area, including Dartmouth Hitchcock Medical Center and White River Junction Veterans Affairs Medical Center. He received his medical degree from Perelman School of Medicine at the University of Pennsylvania and has been in practice for 11-20 years.

Key Moments:

At 16 mins and 0 seconds: About team-based care in cancer.

“Nothing I do for my patients happens in a vaccum. There are questions about radiation, radiology or pathology…the cases we bring to tumor board are the cases where we have questions. It maybe for a patient with a new diagnosis or a patient I’ve had for years and the situation has changed and there is a new question. I could send the patient to another specialist but it’s not the same as four specialists in one room looking at a single case.”

At 30 mins and 05 seconds: Tumor board vis-a-vis guidelines.

“The NCCN guidelines are very influential documents that say what the evidence is in that cancer type. They are not proscriptive. There are lots of areas that are highly subjective in patient care. It’s also true that they are a US organization and refer to drugs available in the US. Tumor board addresses the issues where guidelines are not detailed enough, or where more subjective discrimination is required.”

At 32 mins and 50 seconds: Guidelines drive most situations.

“95% of the time, or rather 99% of the time…most of the things that I do are consistent with the NCCN guidelines. Once is a while there is situations where the guidelines don’t apply.”

At 39 mins and 12 seconds: Decision making in cancer.

“The idea that you can make this decision today that is going to specify every step along the way for the rest of the year for most of our patients is not realistic.”

At 41 mins and 13 seconds: Honesty in difficult conversations.

“I think it is very important for me to be truthful to my patients and tell them that my goal is to help you live longer and help you, but maybe not to cure you. …It’s not my job to tell my patients what the future holds, because we really don’t know.”

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this episode, we cover:

About the guest:

Sanjay is a Learning Designer who currently leads L&D at Pride Circle. He has previously worked as a part of the Founding Team of Harappa Education and the skilling team of NASSCOM Foundation. He is passionate about mental health, queer rights and cancer advocacy.

He got diagnosed with incurable brain cancer at the age of 29 the day he landed on Harvard University's campus to start his Master’s program in September 2021. He's currently leading an effort to write & publish a first-of-its-kind book on Adulting with Cancer called ‘Don’t Ask Me How I’m Doing: Life, Death and Everything in Between’ -- to chronicle the experiences, raise awareness and create a resource for Indian and South Asian young adult cancer patients, survivors and caregivers.

He is an incoming graduate student at Harvard University, a postgraduate of the Young India Fellowship program at Ashoka University, and a Valedictorian and Student of the Year from St. Xavier’s College, Mumbai.

Key Moments: 

2 mins and 3 seconds

So my understanding of privilege was very different. Because even if I identified myself as a queer person, it came with many safety nets around me. That went away when I got diagnosed with cancer. Now not only was I disadvantaged because of my sexuality, but I was at a disadvantage because of my cancer experience.

6 mins and 23 seconds

So there is this generation of queer people who have just realized that they can be themselves. They are in that phase where they're trying to explore things. They're trying to be openly themselves. There's that frog in the pond syndrome. There are so many fish in the sea, why do you want to settle for one, so everyone's trying to experiment and like, you know, like, find their own feet.

25 mins and 32 seconds

The worst thing is when you reveal in a public sort of space, and that public, I don't even mean like a huge stage or like in like a large audience, even when it's just five people together, and you just say that. No, I'm sorry, I can't do this because I'm a cancer survivor.

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this podcast we cover -

About Sanjay Deshpande:

Sanjay is a Learning Designer who currently leads L&D at Pride Circle. He has previously worked as a part of the Founding Team of Harappa Education and the skilling team of NASSCOM Foundation. He is passionate about mental health, queer rights and cancer advocacy.

He got diagnosed with incurable brain cancer at the age of 29 the day he landed on Harvard University's campus to start his Master’s program in September 2021. He's currently leading an effort to write & publish a first-of-its-kind book on Adulting with Cancer called ‘Don’t Ask Me How I’m Doing: Life, Death and Everything in Between’ -- to chronicle the experiences, raise awareness and create a resource for Indian and South Asian young adult cancer patients, survivors and caregivers.

He is an incoming graduate student at Harvard University, a postgraduate of the Young India Fellowship program at Ashoka University, and a Valedictorian and Student of the Year from St. Xavier’s College, Mumbai.

Key Moments: 

4 mins and 1 second: In response to the question “how are you?”

When you ask that to a cancer patient or survivor, the expectation is that you're likely wanting to hear the truth. But in my experience, most people aren't ready to hear the truth. They don't want to know that you're struggling, they don't want to know that you're having a mental breakdown. They don't want to know that you are in pain.

18 mins and 23 seconds: Living life with cancer

Earlier before cancer, the way I used to usually socialize with my friends was over drinks or over a smoke or going out dancing or to a party. Almost all of them I'm not allowed to do. I can't drink because they tried to trigger my seizures. I can't smoke because, hello cancer. I can't go dancing because my skull hasn't healed from my surgery. I can't stay up late at night because it triggers my cancer and triggers my seizures. So how do you then re-enter this world that you were once a part of, and still live a life right?

30 mins and 3 seconds: About that moment post-treatment.

It's kind of like you've you're like running really fast to get to this destination and then you realize the destination is actually a cliff and you're jumping off and you're like ‘oh god I am falling.'

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

Key takeaways:

About Dr. Don Dizon:

Don S. Dizon, MD, FACP, FASCO, is an oncologist who specializes in women's cancers. He is the director of women's cancers at Lifespan Cancer Institute and director of medical oncology at Rhode Island Hospital. He is also a professor of medicine at The Warren Alpert Medical School of Brown University. His research interests are in novel treatments of women’s cancers and issues related to survivorship, particularly as they relate to sexual health after cancer for both men and women.

He is a prolific researcher and writer, and he has authored hundreds of publications, including peer-reviewed articles, books and book chapters. He is an active member of the American Society of Clinical Oncology, SWOG cancer research network, and the National Consortium of Breast Cancers, of which he has served as both vice president and president.

Key moments:

12 minutes 27 seconds

That person may be more interested in symptom control, in which case they would find more affinity in a metastatic brain tumor group. But they also may want to see people that look like them, that are like them who are going through this experience because of the threats metastatic brain cancer has on people’s sexual health.

14 minutes 35 seconds

It’s what makes cancer care so multifaceted today. There’s no one person who can really manage all the aspects of cancer care. By that, I mean whole-person cancer care. It really brings in the importance of having a team approach.

21 minutes 8 seconds

There’s a relationship between medical oncologists and their patients that is very difficult to walk away from for a lot of people. It almost feels like severing a relationship and it’s quite an unsettling thing.

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this podcast, we cover -

Jessica Fisherman is the Founder of a Non-Profit called, Soulful Sunflower. Jessica was 34 when she was diagnosed with TNBC (Triple Negative Breast Cancer). She was overwhelmed researching products that could have potential reactions due to chemotherapy. She began researching companies that made "good" products for cancer patients. She started getting products and giving them away for free to others. 

Soulful Sunflower provides products for free to the cancer community. They go directly to companies to make sure that their product is safe, but can not predict everyone’s allergies or sensitivities and do not take responsibility and accept no liabilities. This is a completely free box that is sent directly to people that have either been nominated by friends or family members or they nominate themselves through social media. 

Key Moments:

At 18 minutes and 41 seconds:

I have such little energy, and I need to focus that energy on the good parts (of life). 

At 25 minutes:

It is okay to be vulnerable. People understand, even if they have never gone through..they give us the space to make mistakes.

References:

Jessica’s Instagram: https://www.instagram.com/_soulfulsunflower_/?hl=en

Soulful Sunflower: https://www.soulfulsunflowerinc.com/

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

Insights from this podcast episode:

Yvonne had been working in healthcare for over 9 years when she felt a tightness in her left chest. At first she thought it was from doing too many push ups or a pulled muscle. When she examined it closely, she discovered a lump. Yvonne waited 2 weeks to see her OB/Gyn. She ended up getting her first (of many) mammograms the day after Christmas, followed by a biopsy. She received the fated cancer call the Monday before New Year's Eve in 2019. Diagnosed at 37, Yvonne started treatment in 2020. She (along with the podcast host, Samira Daswani) experience the new healthcare environment with the introduction of Covid-19 to the world. Navigating cancer is one thing, navigating cancer during a pandemic is a whole other world. Both Yvonne and Samira share their experiences in this episode on what it was like to manage both C's -- Cancer & Covid. 

When face masks became the norm, and 6-feet apart the slogan, as an immunocompromised person, it was a terrifying time. Going to the hospital for appointments, treatments, and sadly, being admitted, had a whole new isolation to it. The healing promise became all the more challenging. 

Yvonne had amazing support from her family and close friends in spite of these social distancing protocols. Yvonne finished her last chemo infusion in July 2020 when she ventured into UCSF’s gift shop. There she saw a book with a title that made her smile under her hospital given mask. “Agony and Absurdity: Adventures in Cancer-land. Young Women and Breast Cancer An Anthology.” This is how Yvonne found BAYS. Yvonne has been a member of BAYS after her “active” treatment ended. She is currently on the committee for the 4th Anthology. Yvonne looks forward to helping the fellow members as BAYS has helped her with her survivorship journey.

Key Moments: 

11 minutes and 26 seconds:

“I think the biggest learning from the tribe is self care and acknowledging that is it is okay to slow down and it is okay to not do the 5 million things you were doing before you were diagnosed with breast cancer.”

32 minutes and 41 seconds:

“I would like to see a world in which patients and caregivers are comfortable in looking at their data, feel comfortable balancing risk vis-a-vis their quality of life, vis-a-vis their context of life “

35 minutes and 43 seconds:

“Not everyone can grasp the concept of clinical trial...if you understand what your options are, it is super helpful to feel that you are not just  a thing in a petri dish for them to look at, you are more than that."

Show Notes:

Learn more about BAYS on their website: https://bayareayoungsurvivors.org/

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.