Karla Chavez had just survived a bout of thyroid cancer when she was hit with more bad news.  She was diagnosed with Stage II Keratanizing squamos cell carcinoma, a rare form of cervical cancer.  After a battle that including eight rounds of chemotherapy and learning she would have to wear a colostomy bag, Karla survived and resumed her career as a civil engineer in her native Honduras.

Her journey began in 2016 when she started gaining weight.  She went to a doctor who found a lump in her throat.  Even though a biopsy showed nothing unusual, he wanted to perform a surgical procedure to remove it.  The lump turned out to be thyroid cancer.  Karla was sent to an oncologist who told her she should be prepared for radioactive iodine, but before that she should be tested to make sure she was okay to receive radioactive iodine.  That was in January 2017.  Some of those tests were conducted were conducted by a gynecologist, as those tests took place, Karla was bleeding.  The doctor said this didn’t look good and ordered a biopsy.  Two days later, the doctor called Karla to her office and told Karla she had cancer.  Karla went back to her oncologist, who said she was Stage 2B cervical cancer, and that she needed to get on chemotherapy as soon as possible. 

The specific diagnosis was Keratinizing squamos cell carcinoma.  Karla Chavez was told she would not be able to bear children, but at the time of her diagnosis, she was in no physical pain.  She experienced bleeding during sexual intercourse, but when she bled on days away from her period, she learned she that was a symptom of her type of cancer. 

Karla did eight rounds of chemotherapy in conjunction with external radiation therapy.  Her care team was very upfront, saying once the radiation began, her fertility would be gone.  That news, said Karla, was the toughest part of her treatment, tougher than its physical aspects.

Karla suffered acute fatigue during her treatment, once sleeping for three days.  Eating and drinking were difficult because everything tasted like metal.  She also suffered cognitive issues, which affected her at work because she made many mistakes.

Her treatment had side effects that hampered her bowel functions and she had to wear a colostomy bag.  That was tough enough, but about 40 days after the surgery, she developed a rectovaginal fistula, a painful tear that developed between her vagina and her colon.  An oncologist checked it out and said the tear was 2.3cm wide, and that Karla would have to wear diapers.  She refused to do that, but does wear maxipads.  This was very tough because she no longer gets her period, but has to wear the maxipads to deal with secretion of these fluids she cannot control. 

In the meantime, it took Karla Chavez about six months to learn how to manage the colostomy bags and to find a type of colostomy bag she liked.  As a result, when she travels, she always has an extra change of clothes.  She has learned to deal with all these problems, and has learned to make her life as normal as possible.

Additional Resources:

Support Group:

Cervivor: https://www.cervivor.org

When playing with her children, Rachel Bretbrunner fell.  She felt acute pain in one leg.  After waiting about six weeks, she sought medical attention, and an MRI revealed a tumor in the leg.  Doctors scheduled surgery to remove the tumor.  When Rachel woke up from the surgery, her husband told her she had bone cancer.  Given an option, she chose knee replacement surgery over a chemotherapy regimen.

Rachel Bretbrunner of Halsey, Oregon loves to hike and camp.  It was during a camping trip that two of her kids, ages eleven and thirteen, were rough housing.  When she joined in, she fell, and experienced pain in her entire leg; but when she got home from camping, the pain was pretty much in her lower leg.

About a month and a half later, Rachel was seen by a doctor.  An MRI revealed a tumor in the leg.  That was followed by a biopsy, which showed the tumor was benign, and surgery was scheduled to remove the tumor.  However, when they went in, opened up Rachel’s knee to take out the tumor, they learned there was cancer in the tumor.  It was eaten away part of her tibia.  Doctors removed that part of the tibia and they put in an adhesive to hold the bone together.  When Rachel regained consciousness, her husband informed her she had a sarcoma, a rare form of bone cancer.

At this point, Rachel still had the tumor.  She was told she could have it removed and then have two rounds of chemotherapy before the surgery and two rounds after they remove the tumor, or they could do major knee replacement surgery to make sure the cancer didn’t come back in two years.  She chose knee replacement surgery, but as it turned out, Rachel still had to undergo chemotherapy after the surgery.

As for the surgical procedure, doctors also reconstructed her leg because the metal that they had`to use to replace her tibia, they put cobalt blue in it and the blue showed through her skin.  As a result, they had`to remove a tendon from her ankle and a muscle out of her foot, then they had to wrap the muscle around the tendon to hold it.  Rachel says to this day, she walks with a limp because of the muscle missing from her foot. 

She was being seen by a sarcoma specialist at a hospital two hours away in Portland, which is where Rachel underwent her chemotherapy regimen.  Seven days after she was discharged from the hospital, she had neutropenic fevers and ended up going back for three more days of antibiotics. 

Rachel Brutbrunner suffered many of the common side effects associated with chemotherapy.  They included mouth sores, hair loss and cognitive issues.

Rachel says before cancer, she lived a life without pain.  Now she feels pain every day, but it is not excruciating pain.  Although she can camp, she can no longer hike because f the pain in her foot, but Rachel says she is happy to be alive and in a position to raise her kids.

Additional Resources:

Support Group:

Kickin’ Cancer: https://www.kicking-cancer.org

A registered nurse and a mother of three in Brighton, Colorado, Annie Parrish was 24 years old when she noticed a golf ball-sized lump in her throat. 

Her family physician performed a palpation, in which the doctor feels the gland.  It was enlarged, so the physician did a thyroid panel, a comprehensive type of bloodwork.  The panel revealed Annie’s was hypothyroid, meaning her thyroid-stimulating hromone numbers were too high.  She was put on a regimen of Synthroid, because the thyroid was not functioning as it should, leaving her dependent on the medication. 

When Annie’s thyroid did not respond properly, doctors performed two fine needle biopsies, which were inconclusive, as was an ultrasound.  Annie knew something was wrong, but wanted to keep as much of her thyroid as possible, so she had a partial thyroidectomy done.  Doctors removed half of it, but determined that what they removed was cancerous, officially classified as follicular thyroid cancer with a papillary variant.  Annie Parrish would have preferred to have half a thyroid instead of none at all, but she didn’t want the cancer to return, so she opted for a full thyroidectomy along with tonsillectomy because her tonsils were abnormally big.  The procedure left her with a scar below her neck.

Annie needed two additional surgical procedures, and when they were done, she had to go back on synthroid.  This was difficult because it affected her mood mental well being, and each time she took it, she got a headache.  She felt “close to normal,” and realized going forward she might never look the same or feel the same, but also realized she was still alive and cancer-free.

It wasn’t until about a year after her procedures that Annie felt she had gotten the upper hand on thyroid cancer.  She went in for periodic ultrasounds.  The thyroglobin level is an accepted marker that the cancer has come back, and her thyroglobin level showed that she was free of cancer. 

Annie Parrish is active in hiking and other outdoor activities.  She says she can now physically do everything she could do prior to her diagnosis.  However, she is still on synthroid and always will be.  Sometimes it leaves her feeling a bit too hyper and affects her ability to sleep, but overall, she is cancer-free and is happy with that, even if its means she has to be synthroid.

By way of advice, Annie Parrish says if anything regarding your health seems abnormal, don’t hesitate, and ask for help.  She urges you to be your own advocate, and to never assume that others are going to step up and help if you stay silent.

Additional Resources:

Support Group: Thyroid Cancer Survivors’ Association https://www.thyca.org

Gillian Lichota had to juggle the daunting combination of pregnancy and a mastectomy with Stage III breast cancer.  Gillian dealt with both, achieved survivorship and went on to establish a foundation designed to aid young women diagnosed with breast cancer.

Gillian and her husband, from Washington, DC, had tried for three years to conceive a child without success, so they turned to invitro fertilization in order to conceive.  After immediately after starting on IVF, Gillian noticed a lump on her right breast.  When in the shower, she did a self-exam, felt the lump and noticed a burning sensation.  She was concerned, but as told while going through IVF that breast tissue can become dense and can become painful, so she shouldn’t be surprised by either condition; but when the IVF stopped, the pain continued.

Gillian Lichota made an appointment with an OBGYN and at the time they were going to test whether the embryo had transferred, but learned through an ultrasound that she had all the characteristics of breast cancer.  She was then sent for a biopsy, which confirmed she had Stage III breast cancer.  Because the cancer was estrogen-driven and Gillian was now pregnant, there was a great concern for her life.

Gillian was in a state of shock.  However, she was encouraged knowing she had a topnotch care team, helping to sort out a very difficult.  Armed with their expertise and information, she chose to move forward with a mastectomy while pregnant. 

Such a decision posed a significant risk for Gillian Lichota.  She had a history of miscarriages.  As a result, her team had to get creative in terms of all aspects of her care, including anesthization so that it didn’t present a risk to the fetus.

She was presented with three choices.  Gillian could go forward with the pregnancy and wait until after her baby was born to address the cancer, but because the estrogen was going to increase over time, it created a huge possibility of death with the prospect of the cancer spreading.  She could have aborted the pregnancy, but after years of trying to get pregnant, she didn’t like that option.  That’s why she went with the mastectomy, then starting with chemotherapy after 20 weeks once the chemicals cannot pass the placenta.  

She had to go through two phases of chemotherapy, one during her pregnancy, and another about three weeks after her son was born.  She chose to be focused on her pregnancy, but that was a challenge, trying to nurture this life inside of her body at the same time the medication is trying to kill cells.  Once her baby arrived, things really became difficult.  She was experiencing acute pain while trying to be a new mother.  In addition to the pain, there were the side effects.  She experienced hair loss and cognitive issues.

Eventually the surgeries and treatments ended and Gillian Lichota wanted to get back to feeling good about life, physically, mentally and from a wellness perspective.  There were residual side effects from the chemo and the surgeries, but she worked to get past them.  One who loves the outdoors, she joined friends and scaled Mt. Kilimanjaro.

Gillian’s experience made an impression.  It left her wanting to help other young women diagnosed with breast cancer.

She founded the iRise Above Foundation.  The advent of COVID reduced the amount of face-to-face interaction, but that accelerated the development of the Foundation’s website.

Additional Resources:

iRise Above Foundation: https://wwwiRiseAboveFoundation.org

In this episode of the Cancer Interviews podcast, Jeff Moreau tells our host Bruce Morton how he survived Papillary Thyroid cancer with surgery to remove part of his thyroid, followed by taking a radiation pill for 5 years.  Jeff also shares how he went on to become the Executive Director of the Vermont Cancer Support Network, a volunteer non-profit.

Jeff Moreau’s cancer journey began when he discovered a nodule on the right side of his neck.  He said it was very attractive, but he walked around with it for three or months.  Even though his father had passed away from lung cancer, Jeff at first did not make a connection between the lump on his neck and any sort of cancer, but cosmetically he eventually came to the conclusion that he needed to get it checked out.  The doctor took one look and decided to run a biopsy.

The doctor said the nodule needed to be removed and that once it was, I would be good to go.  About a week later, the doctor called, and said Jeff would need to get part of his thyroid removed.

Jeff, of St. Albans, Vermont, said the procedure went really well.  However, the thyroid is shaped like a butterfly, and they removed what amounted to one wing.  The good news was, what they removed was non-cancerous; the bad news was, they saw a spot on the other side, and they wanted to schedule another surgery to remove it as well.  They apparently needed permission to do that, otherwise they would have gone ahead and removed both sides of the thyroid.  Unfortunately, that second procedure resulted in a diagnosis of papillary thyroid cancer.  The doctors were happy to report they were confident they had gotten everything and that it hadn’t spread.  However, post-treatment for the next five years, Jeff had to take a radiation tablet, as a means of making sure everything was caught. 

When administering the pill, somebody walks with what looks like a hazmat suit and the pill is in this metal container, but it is like taking an aspirin, it’s just one pill.  The tech is wearing a protective suit, but his wife and daughter weren’t, so for a few days after each pill, he had to be away from his family.

After coming in for regular checkups, once Jeff got to the five-year mark, he was told he was in remission and no longer had to take the radiation pills, but even that, he says, wasn’t all that difficult.  Jeff admits his cancer journey wasn’t as stressful as that of many others, but it still includes a fair amount of uncertainty.  Each time I would come in for a test, he would be concerned until hearing that the time went fine.  He said without question, the toughest part was the waiting.

As for Jeff’s wife and daughter, he said if they were stressed, they didn’t show it.  He is extremely grateful for their consistent support.

With diagnosis and treatment behind him, Jeff Moreau says his health is pretty close to what it was, pre-diagnosis.  His only problem has been a bit of weight gain, but otherwise, he says he is in fine shape.

Meanwhile, his involvement with cancer has not ended.  Jeff became the executive director of the Vermont Cancer Support Network, a small, volunteer-supported non-profit.  He says he has nothing to do with the clinical part of the operation, but does supervise its administrative side. 

Jeff says his experience on a cancer journey helps him in his capacity with VCSN because it gives him an enhanced perspective of the behavioral health pieces, mental health pieces and peer support pieces of patient outreach.  He says that outreach is not confined to those who visit the VCSN facilities, as VCSN has a website he says has been contacted by people all over the world.  Its address is https://www.vcsn.net. 

Additional Resources:

Support Group:

Vermont Cancer Support Network

https://www.vcsn.net

In 2005, Mike Craycraft thought he might have testicular cancer, but waited seven months to seek medical attention.  After experiencing a scrotal ultrasound, being checked out for preoptive tumor markers and undergoing an inguinal orchiectomy, he was relieved to learn that while he had been diagnosed with testicular cancer, it was Stage I and very treatable.

A clinical pharmacist by trade, Mike Craycraft of Cincinnati, Ohio, was living in South Florida when one night he felt a lump on his testicles.  Immediately he had a feeling it was cancer.

Seven months later, he saw his primary care physician, who ordered a scrotal ultrasound.  Its results were enough for the doctor to send Mike to a urologist.  A week later he was seen by the urologist.  That night he received a call from the urologist asked Mike to come in the next day. 

When Mike came in, he was told of his diagnosis, but there was still more work to be done.  The urologist looked at preoptive tumor markers, followed by CT scans.  Next he scheduled an inguinal orchiectomy, in which the groin area is viewed to determine the stage of the cancer.  Miraculously, despite Mike waiting so long to be seen on the matter, his testicular cancer was diagnosed as Stage One.

Mike Craycraft was given the option of following through on active surveillance, and that’s the option he chose.  From that point up until the present, Mike has gone in for his scheduled CT scans and blood work, and he has been fine.

Mike says his health is very close to what it was prior to his diagnosis.  In 2013, to celebrate his seven-year ‘cancerversary,’ he climbed Mt. Kilimanjaro.

In another way, Mike’s life has changed.  He founded the Testicular Cancer Society.  He says in 2006, when he was diagnosed, there were very few support avenues for those diagnosed with testicular cancer.  TCS offers support in-person in the Cincinnati area or via the internet through https://www.testicularcancersociety.org.  It works in three main areas, those being increasing awareness, access to care and quality of care.

By way of advice, Mike Craycraft says if you are diagnosed with testicular cancer, or any type of cancer, to take a deep breath, take a step back and get some perspective to formulate a gameplan, and avoid making rash decisions.

Additional Resources:

The Testicular Cancer Society: https://www.testicularcancersociety.org

Dr. Shyamala Peesapati of Bangalore, India is a dentist by trade, but devotes a great deal of energy to helping those with rare diseases.  On the day she turned 21, her father was diagnosed with granulomatosis with polyangiitis.  He died in 2019.  Shyamala was unaware of patient advocacy and didn’t know about social media; but she quickly learned of both.

After learning of her father’s diagnosis, she was dismayed to realize that for those with rare diseases, in India there was little or nothing in the way of doctors trained to treat such diseases.  She also found it was difficult to locate like-minded people who knew others who had been diagnosed with granulomatosis with polyangiitis.  That’s when Shyamala put social media to use, and became a fierce, tireless advocate for those diagnosed with rare diseases.

A lack of specialists with knowledge of her father’s disease resulted being misdiagnosed as a form of lung cancer.  Part of this stemmed from a lack of access to health care, and not knowing which doctor could best provide care for her father.

One day when she had nothing better to do, Shyamala went on Instagram and wrote about rare diseases.  She saw some people liked her post, she continued to write on the subject, and that turned her into an advocate.  Shyamala began receiving responses from all over the world.  This led to the creation of her website, The Rare World. 

Dr. Shyamala Peesapati hopes her website will inspire those with rare diseases, rare cancers, to speak up.  That way they can connect with patients and loved ones diagnosed with the same disease when because of the diagnosis or where they live, have a difficult time finding doctors familiar with the diagnosis or people they can talk to as a means of support.

Shyamala says those who visit her website can expect support, plus knowledge and motivation.

Additional Resources:

Support Groups:

The Rare World: https://www.therareworldofficial.com

McGill University Rare Disease Interest Group: https://www.raredigmcgill.com

Vasculitis Foundation: https://www.vasculitisfoundation.org

Patrick Owen fractured his right femur when jamming his foot into a ski boot.  That led to a PET scan, which led to a diagnosis of renal cell carcinoma, a form of renal cancer.  Patrick was able to avoid chemotherapy, and instead went with a regimen of immunotherapy, which brought him to survivorship.  He shares his story with the @CancerInterviews podcast.

Patrick Owen loves to travel and hike and scuba dive.  He also loves skiing.  On a ski trip three hours from his home in Salem, Oregon, he was trying to get his right foot in his ski boot when his femur snapped in half.  After he was done screaming in pain, he told his wife he thought he had cancer because one doesn’t just break the strongest bone in one’s body while putting on a ski boot.  Patrick was taken to a hospital, where a rod was put in his femur from his knee to his hip.  An ensuing PET scan revealed the diagnosis of renal cell carcinoma.

He was given the option of a relatively-new form of treatment called immunotherapy, which he chose over chemotherapy.  It consisted of 12 weeks of two different types of medication infusions.  He would be hooked up to an IV and did that every three weeks for 12 weeks.  Then he went to one infusion once every four weeks.  Patrick felt amazed and blessed that he didn’t have any of the side effects.

Patrick said his right leg was a problem even before his diagnosis.  A month prior to the diagnosis, after getting out of bed, he stepped down on his leg and felt a sharp pain just above his knee.  He admits he didn’t think much of it, the pain went away, but his wife repeatedly said he should see a doctor.  In retrospect, Patrick thinks that morning, he might have partially broken the femur.  Even after achieving survivorship, sometimes his leg is a source of pain and sometimes, he limps. 

Patrick Owen still undergoes periodic scans on his femur.  He is told it is healing, but will never completely heal.  He is grateful to have survived renal cell carcinoma, and tries to be as healthy as he can with a sugar-free, low-carb diet. 

Additional Resources:

Kickin’ Cancer: https://www.kicking-cancer.org

When Kelley Pratt went in for a routine physical, her doctor found a large nodule sticking out of the left side of her neck.  That led to an ultrasound, then a fine needle biopsy.  An ear, nose and throat surgeon viewed test results and told Kelley she had medullary thyroid cancer.  This diagnosis involves a neuroendocrine tumor that can only be addressed with surgery.  Kelley was fortunate to have an outstanding surgeon and the procedure led to survivorship.

Kelley is a registered nurse from Birmingham, Alabama, but in 2004, she was living in Missoula, Montana, and thought her showing up for a routine physical would be…routine.  When her doctor felt Kelley’s neck for lumps and bumps, he found a golf-ball sized tumor in the left side of her neck.  He wanted her to undergo further testing and called for an ultrasound, then sent her to an ear, nose and throat surgeon who viewed its results, and told Kelley she either had lymphoma or thyroid cancer.  The ENT sent her to get a fine needle aspiration, in which a needle into the tumor, and at age 32, Kelley Pratt was diagnosed with medullary thyroid cancer.

This is a rare type of thyroid cancer.  Because it involves a neurodocrine tumor, the cancer technically doesn’t come from the thyroid and as such is not treated like other thyroid cancers.  The other three thyroid cancers can be addressed with radioactive iodine therapy or chemotherapy.  Her cancer was going to require surgery. 

Kelley said she was quite fortunate in that she had a surgeon in Missoula who was experienced in dealing with medullary thyroid cancer.  Her first surgery was conducted with a thoracic surgeon.  It was a sternotomy and a thyroidectomy, removed the metastasis by splitting her sternum, then removed her entire thyroid, an eleven-hour surgery.  The procedure left her with a scar from one side of her neck to the bottom of her neck, down to her sternum.  It also did nerve damage.  For the first year after the surgery, Kelley was unable to lift her left arm. 

Even though eventually healed in full, she could not return to work right away, but it was when she could return, that Kelley felt her journey was taking a turn for the better. 

Kelley Pratt says these days, her health is about 70 percent of what it was before her diagnosis.  She can still go on long hikes and has full range of motion in her left arm, but occasionally experiences lymphdema, which causes swelling due to a buildup of lymph fluid.

By way of advice, Kelley says for anyone diagnosed with medullary thyroid cancer to be sure to find a care team well-schooled in the treatment of this rare cancer.

Additional Resources:

Support Group:

Thyroid Cancer Survivors’ Association: https://www.thyca.org

It was far from easy, but Francie Nordin survived acute myeloid leukemia, a diagnosis preceded by epileptic episodes and pancytopenia, the latter tied to low red cell counts, low white cell counts and low platelets.

Her journey began in 2020 when her left foot started swelling.  Then she had a scary episode while driving in which her left eye started uncontrollably moving left and right.

Francie went to an ER, where initially they thought she had a stroke, but tests came back negative, so they referred back to her primary care physician.  In September of that year, she more epileptic episodes, and in December she was diagnosed with epilepsy. 

Francie tried to find an epilepsy drug that would work for her, without success.  She had several reactions and was constantly changing medications.  Then one day she was found on the floor of her living room.  She was taken to ER and then because of very low potassium, she was admitted to a hospital.  Throughout her 12-day stay, she was found to have pancytopenia.  Francie strongly advocated for a hemotology doctor instead of an outside referral.  At first the doctor thought Francie might be suffering from myelodysplastic syndrome, in which immature blood cells in the bone marrow do not mature.  The oncologist said he and his staff couldn’t figure out what was going on, so he referred me to the Mayo Clinic in Scottsdale, Arizona.  There she saw a whole bunch of specialists who did a whole bunch of workups and said Francie could be suffering from a virus she had had since childhood. 

Still baffled, they called for a bone marrow biopsy.  Francie Nordin went back home to Spokane, Washington and waited for the results, as doctors thought she might have a rare form of acute myeloid leukemia.  They weren’t sure if epilepsy was the cause, but did say it is not uncommon for an epilepsy diagnosis to lead, the chances of blood cancer are very high.

Francie decided she wasn’t going to do a bone marrow transplant because she knew what people went through when opting for such a procedure.  She instead chose natural remedies and to rely on prayer.  In the meantime, she developed an infection called parvo, one rarely seen in adults.  Francie said she made huge changes in her diet, got lots of rest and was soon off her epilepsy medication. 

Mentally she felt sharp, but physically she was miserable.  Her iron was low and so were her blood counts. 

However, Francie says through her diet and through prayers, from her and her friends, her test results improved and so did her health.  It is a process, she says, and she continues to believe she will once again be made whole as if cancer never had happened to her.  Francie Nordin also says she will be better for this journey, as difficult as it had been.  She advocates for oncology patients and she does so with a passion she would not have had were it not her cancer journey.