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.

Tony Bartholomew had become reunited with the woman who would become his wife, Monica, when in 2015, Monica learned she had a tumor in her breast. She went to surgery, had the breast removed, and doctors took some lymph nodes to test them, and sure enough, it was Stage III cancer. Post-surgery, she would have to undergo chemotherapy, an aggressive cocktail commonly known as 'Red Devil.' He shares his story with the @CancerInterviews podcast.

Monica was scheduled to undergo chemotherapy for 12 weeks. After each hospital visit, always on a Thursday, she would stay with Tony. Then she would go home and return to Tony's place on a Wednesday prior to her next visit.

Monica decided to halt the chemo after ten weeks. During that time, she lost all of her hair, got very weak, and her white blood cell count became dangerously low. She could not use her fingers and her toes were bending. Doctors offered to put her on radiation treatment for the remaining two weeks, but because it could do severe damage to one of her lungs, she declined.

Tony and Monica sold their homes, moved in together in Placerville, California and eventually married. Tony decided he would do whatever he needed to do to care for Monica with no consideration for his convenience. He made the hour-long drive to her hospital visits. When they were home, Monica loved to cook and clean, and they found it therapeutic to let Monica do was much as she could. When she reached a point in which she could do no more, Tony took over, and Monica napped.

Monica reached the five-year mark after her surgery and has been pronounced cancer free. Her toes are still bent and at times she has trouble walking, but the experience, as awful as it was at times has brought them closer together.

By way of advice, Tony Bartholomew suggests anyone placed in the role of caregiver to learn as much as possible about the type of cancer the person for whom they are caring, has. He also urges the caregiver to forget about themselves to keep the person they are caring for, top of mind.

Additional Resources:

Cancer Interviews: https://www.cancerinterviews.com

Allison Hancock's cancer journey began with a visit to her doctor, who felt something abnormal in her breast and called for a mammogram and an ultrasound. Those procedures revealed nothing that appeared harmful, so he suggested they examine the breast again in three months. When the breast was examined a second time, tests revealed the presence of a tumor. The doctor ordered a biopsy, the tumor was found to be cancerous, and she was diagnosed with Stage 2B invasive breast cancer.

With the diagnosis, many things went through Allison's mind, uppermost being would she be around to raise her young boys.

Allison's husband, Mark, took her to all her chemotherapy treatments. She went through eight rounds, four with the medications adriamycin and cytoxin, and four with taxol.

The chemo presented numerous challenges. In addition to her having little in the way of energy to keep with boys, ages three and four, there were cognitive issues, forgetting this and that, but she said the hair loss was really traumatic. She said she felt she had lost some of her identity. After clumps of hair fell, she decided to shave her head and reluctantly became a 'hat person.'

Allison Hancock eventually completed her regimen chemotherapy and radiation, there remained another phase to her journey. She had to go on an Aromatase inhibitor, which is meant to address any lingering cells. Allison said she might have been 40 years old, but she felt like she was 80. She experienced a lot of joint pain and muscle pain, but knew she had to be on this drug, if she wanted to defeat cancer. She also had a lack of energy. She loved to hike, and had these five-mile hikes she really liked, but just could go on them. Getting her body and her muscles and her joints back in shape was a process, but she finally made it back to normal.

Allison went to volunteer with a support in the Portland, Oregon metro area called Breast Friends. With the passage of time, she rose up the ranks and is now its executive director.

While Breast Friends has a number of in-person services it can offer those in the Portland area, its website has a wealth of information that can come to the aid of women worldwide as they go through their breast cancer journey.

Additional Resources:

Breast Friends: https://www.breastfriends.org

Annamarya Scaccia of Austin, Texas decided she wanted to optimize her health by improving her diet and becoming a competitive bodybuilder. So, when she began to experience persistent back pain, she thought the pain might have been tied to her weightlifting. She also thought it might have something to do with her having polycystic ovary syndrome. Annamarya attributes her diagnosis of kidney cancer to her having a conscientious doctor. She saw Annamarya's creatinine levels, didn't like how they looked, and asked that Annamarya undergo an ultrasound. This led to an MRI, which led to the diagnosis. Annamarya said without these procedures, she never would have known she had chromophobe renal cell carcinoma.

Annamarya admits the diagnosis did not come as a shock. It came after a blood draw with bad indicators. After the blood work, her protein level was checked. Her weightlifting routine was reviewed because muscular people produce a higher level of creatinine. That led to another blood draw. The levels were still abnormally high, which brought on the ultrasound, which revealed a mass on her left kidney. Unfortunately for Annamarya, this made sense. She said for years her white blood cell count was high. When she brought to the attention to doctors over the years, she said they attempted to explain it away by saying it was no big deal, that she must have been sick at the time of the test. However, the doctor at the time of the diagnosis thought it might be something else and did some investigating the others didn't. So, when Annamarya was diagnosed, there was neither shock nor disbelief, just pain and sadness.

Her urologist had mixed feelings about the outcome. He was positive the surgery could cure Annamarya. He was hoping to perform a partial nephectomy, which was essentially carving out the tumor while saving most of the kidney. However, when he went and saw where the tumor was positioned, Annamarya knew right away that the entire kidney would have to come out. However, in regard to remission and the rate of recurrence, he was optimistic about things going well and about removal of the kidney being a curative approach.

The surgery, which included five incisions ranging from her ribcage to her pelvic region, went well, and Annamarya now needed to go forth with one kidney. First off, she needed to prepare for a change in her nutrition and a careful monitoring of her kidney function. Going forward, she had to have less protein, less salt and be careful about her potassium intake. Other than that, Annamarya says there is nothing one can tell you to fully prepare you for life with one kidney.

Annamarya Scaccia said the first three months of her recovery were extremely difficult. While some people have a kidney removed on a Monday and back at work on Tuesday, Annamarya it took her longer to physically return to normal. In addition, she had to tell her six-year-son old that she could not lift him up and that she couldn't eat the foods he was eating.

By way of advice, he says it is okay to feel however you may emotionally feel, you shouldn't suppress those feelings and that you do not have to make other people feel better.

Additional Resources:

The Kidney Cancer Association: https://www.kidneycancer.org

In her early forties, Heidi Slansky of Keller, Texas was in the best shape of her life. She was a fitness fanatic and loved playing tennis. Her doctors had already started her on annual mammograms at age 38, and it was just a couple years later, in 2013, because of a mammogram, she was diagnosed with Stage III breast cancer that had already metastasized into her lymph nodes.

This was very difficult, as children were ages, five, seven and nine at the time. After engaging in a bit of research, Heidi learned her family has a mutation of the CHEK2 Gene, which trigger breast cancer and a variety of others cancers. Heidi if she had known about the mutation earlier, at an age earlier age, she would have far more proactive in paying attention to potential indicators of breast cancer, it would could have spotted at an earlier stage.

Heidi Slansky opted for a double mastectomy with reconstruction. The procedure was accompanied by an extremely aggressive chemotherapy regimen that included the drugs carboplatin, taxotere, perjeta and herceptin, that plus radiation therapy. Heidi went through six chemotherapy treatments, and said the last two were the toughest. Because her husband was working, he was often unavailable to drive her to her treatments, so she had to do it.

Like many undergoing chemotherapy, Heidi went bald. She tried wigs, but didn't like the idea, so she chose to wear lots of hats. She also was tired all the way, which made the tough job of raising three small children even tougher, having to plan the occasional nap after her kids' activities. It was in the summer of 2014 that Heidi started feeling and trending toward survivorship.

As difficult as chemotherapy was, Heidi Slansky is glad she went through the regimen, saying she would do anything to be there for her family.

Heidi later had a second cancer journey, but it was nearly as impactful as Stage III breast cancer.

When making an annual visit to her dermatologist, the doctor found a spot on the bridge of Heidi's nose that was cancerous. It turned out to be basal cell melanoma, which was easily treatable. Heidi had a lengthy incision made across her face, leaving her with a scar. Heidi is just thankful it wasn't the more challenging basal cell carcinoma, but either way, she urges anyone spending a lot of time in the sun to use sunscreen and to try to stay out of the sun during mid-day hours.

When Heidi was diagnosed with breast cancer, she lived in Kentucky. In 2016, she and her family moved to Texas, in the Fort Worth area. She doesn't think patients 'fight' cancer, believing much of that is done by doctors and nurses; and yet, inspired by pursuit of fitness and her personal cancer, she began a nonprofit for women diagnosed with breast cancer and those who have survived breast cancer called StrongHER. While it offers many services, it has a number of fitness classes for women in which they put on boxing gloves to dramatize their 'fighting'cancer, on the premise that going through the physical motions of 'fighting' empowers the women in the class.

By way of advice, Heidi Slansky says there are lots of support resources out there, and for the person diagnosed with cancer to choose the resource that best fits them.

Additional Resources:

Support Group: StrongHer https://www.cancerstrongher.org

Max Schlueter was prepared for his diagnosis of prostate cancer because of a family history. In 2011, his Gleason score of 9.0 indicated a high level of aggressiveness. Doctors right away prescribed lupron, a form of hormone therapy. Max's urologist ordered a bone scan, which revealed the cancer has metastasized to his hips and spine. Doctors offered a clinical trial of chemotherapy teaming docetaxel with the lupron.

The treatment included six infusions, approximately every three or four weeks. That was followed by a series of scans. Max and his care team agreed that the cancer had been stopped and had been put into an inactive period. After six years of this inactivity, he felt he could stop taking lupron, which turned out to be a mistake. The cancer returned in a major way.

Another round of docetaxel was prescribed, while Max resumed with the lupron. He also started taking a drug called zytiga, which locks onto cancer cells and prevents any absorption of testosterone. At that point, he developed what are called rogue tumors, which are unusually large tumors, in his back. They were very painful and prevented Max from lying down on his back. He and his care team decided to address the rogue tumors with spot radiation. It was a week-long procedure and when it was done. It removed the tumors and the pain.

Max was doing very well until 2019, when the cancer came back. It had spread to his skull, ribs and spine. This time he was prescribed a similar but new drug called cabazitaxel. That had good results for about a year. Then Max had a new set of problems.

The cancer came back again and produced a chemical called FGF123, which triggered an autoimmune reaction, removing the linings of the nerves in his legs and feet, limiting Max to a wheelchair.

This time, doctors went a drug called cytoxin, with an eye toward holding the cancer in check while also neutralizing his immune system issues. Both goals were achieved, but one can take that drug for only about a year. Max stopped taking it in 2020. Not long after that, he had more problems with his immune system. This time his doctor prescribed rituxin, which has worked just fine. There were indications his cancer was returning. Doctors put Max on xtandi, which prevents absorption of testosterone by the cancer. He has good results with the xtandi.

Max Schlueter of Northfield Falls, Vermont can now return to enjoying the outdoors. With the aid of braces, he can walk two miles a day. He can bike five miles a day, and he has resumed kayaking. Max says despite all he has gone through, his quality of life is excellent.

Additional Resources:

Support Group:

Vermont Cancer Support Network: https://www.vcsn.net

Victor Phiri continues to work as a pharmacist after twice surviving Stage 3B multiple myeloma, a cancer of bone marrow plasma. In 2018, Victor tells the @CancerInterviews podcast began to experience pain in his lower back. He was given the pain relief medication bortezomib, which provided no help. He declined an MRI, but the pain worsened, and Victor was wheelchair-bound. Victor was brought to a hospital, underwent a series of tests and multiple myeloma was indicated. This is a disease often diagnosed in people older than 60 years of age, but at the time Victor was 32. He was then put on a regimen of targeted chemotherapy.

In his hometown of Lusaka, Zambia, prior to his diagnosis, Victor Phiri was in good health, and liked to play basketball. One day in 2018, when coming home from the gym, he began to feel severe pain in his back. The pain became more acute, and Victor couldn't move. He went in for a medical checkup, was given some pain medication, took it and the pain went away. However, the pain returned, Victor was given bortezomib, and the pain stayed. His lower extremities were partially paralyzed, which confined him to a wheelchair. A doctor insisted on some tests whose results were processed outside Zambia. When they came back, that's when Victor learned he had cancer.

Victor Phiri went on a regimen of targeted chemotherapy. He had the usual side effects of nausea, vomiting, pain in his lower limbs and lack of appetite; what he didn't expect was a loss of his eyesight. Victor became quite depressed and said he was crying every day. He went on to say members of his church provided a great deal of moral support and fiscal support. When they learned that targeted chemotherapy was very expensive, they raised enough money to pay for the procedure.

Meanwhile, his eyesight decreased. He lost the use of his left eye and vision in his right eye is not good. But in 2020, Victor went into remission. He couldn't play basketball, but returned to the gym to exercise. Just when it seemed like things were going well, Victor experienced pain in his left humerus bone, and medication would not bring relief. A medical checkup revealed the bone was almost completely "eaten up." This meant the multiple myeloma had returned and Victor needed to go on radiation therapy, which helped with the pain in his arm.

Victor Phiri does have not full range of motion in his left arm, and has limited sight in one eye, but he is grateful to be able to continue his life's work as a pharmacist.

By way of advice, Victor, who has been through a lot, says to remain positive and take care of yourself, because you are the best asset you have.

Laura Kieger became an advocate for those with rare cancers when she learned members of her family carried the APC gene mutation.  Her family learned of the mutation after her mother was diagnosed with colorectal cancer.  The combination of her mother’s diagnosis and learned of the mutation resulted in her siblings going in not only for colonoscopies, but also for upper GI endoscopies, which examine the duodenal and periampullary areas.  Whereas at the time of her mother’s diagnosis, treatment consisted of chemotherapy and radiation treatment, today there are options including immunology and anti-inflammatories, such as naproxen to keep the polyp burden down.

How rare is APC gene mutation?  Kieger says perhaps one in 10,000 individuals may have it.  Nonetheless, once her family learned about the mutation, she went in for a colonoscopy at age 13.  Based on that procedure and other colonoscopies going into young adulthood, doctors told Laura it looked like she didn’t carry the gene; but because at that time there was no specific genetic test, so she had to keep going in frequently for more colonoscopies.

Laura Kieger says there are some who are skeptical about genetic testing; but she believes anyone who has been told they would benefit from genetic testing and chooses not to, does so at their peril.  She cites Lynch Syndrome, which can exist in one out of 280 individuals.  If one has family members diagnosed with cancers, but doesn’t have cancer themselves, and avoids genetic testing, they could be walking around with Lynch Syndrome and not know it; but by undergoing genetic testing, one can learn they have Lynch Syndrome or another type of cancer, become what Laura calls a ‘previvor,’ meaning they have an opportunity to get in front of cancer, and with any type of cancer, early detection is so important. 

In Laura’s case, she became a previvor when a doctor told her she didn’t have the gene mutation that beset many members of her family, but thanks to genetic testing, she learned she had a villous adenoma, a pre-cancerous growth in her colon that had to come out along with part of her colon.

Because of the ensuing surgery, Laura Kieger says she can do she can physically do just about anything she could do, pre-surgery.

Additional Resources:

Website: https://www.laurakieger.com

Book: “Summer’s Complaint,” available on Amazon

Twitter: lkiegerauthor