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

Whitney Jones, MD, the founder of the Colon Cancer Prevention Project is a staunch advocate of increased usage of biomarkers and genetic testing.  When people undergo a hereditary cancer risk assessment, they can learn about their risk for cancer and address the cancer aided by early detection.

Dr. Jones says biomarkers also help a drug passes clinical trials, enabling them to more quickly hit the market.  These drug trials can be used in an immunotherapy regimen, which provides an alternative to chemotherapy or radiation.  When a genetic marker is identified, it can result in doctors designing therapies they believe would have maximum efficacy.  Plavix is a prescription medicine, but some people carry a gene that makes Plavix ineffective.  If that gene can be identified through genetic testing, a therapy can be designed that doesn’t include Plavix.

The prostate specific antigen is an example of a biomarker that can result in early detection of prostate cancer.  Dr. Jones admits there have been missteps with the prostate specific antigen (PSA), which resulted in its overuse in being an instrument in diagnosing prostate cancer.  He says any new technology needs ongoing scrutiny and with that scrutiny will come an increasing number of god outcomes. 

Whitney Jones, MD says it of utmost importance for people to maintain a strong connection with their physician because it is part of their job that they stay up to date with the latest literature on the subject of genetic testing. 

Wile many advances have been made in the area of biomarkers, Dr. Jones has no doubt there will be many more, with the passage of time. His vision of the future has biomarkers providing the most help in screening for colorectal cancers and human pappilomavirus-related cancers.  He also envisions health care providers tracking when patients are due for a screening and sending self-exams to their homes.

However for this to be effective, Whitney Jones, MD says it has to be available for everyone, not just the rich.

Additional Resources:

Support Group:

Colon Cancer Prevention Project: https://www.kickingbutt.org

Cathy Leman’s breast cancer journey did not begin with something she noticed, but something noticed during her annual wellness visit to her general practitioner.  Cathy’s GP asked Cathy if she felt anything out of the ordinary, and she said she didn’t; but the following morning when getting out of the shower, she said she felt like she had ice running through her veins.  Cathy went back to her general practitioner and that began a series of events that led to her cancer diagnosis.

Originally from central Illinois, Cathy eventually moved to Chicago, where she makes her home.  She works hard at assisting the breast cancer survivorship community.

Cathy Leman’s cancer was non-aggressive, it was low-grade, Stage One and not in her lymph nodes.  That said, she had one clearcut option, and that a lumpectomy with radiation and five years of hormone therapy medication.

The news of her diagnosis was difficult to deal with because Cathy was extremely fit.  Not long before this horrific news, she had run the Chicago Half-Marathon. 

That said, Cathy said she never felt like she was under cancer’s thumb.  She was so angry about the diagnosis, and felt that nothing could penetrate her anger.  Her scans and lab results were so good that she was extremely confident she would get to survivorship.  

At the time of her diagnosis, Cathy had a private practice as a dietician therapist.  Her professional life had been devoted to nutrition and fitness and lifestyle behavior to reduce the risk of illness and keep people out of the hospital.  Not long after her diagnosis, she decided to blend her expertise as a trainer with what she learned in her cancer journey. She soon discovered that there were a lot of gaps in the breast cancer community in terms of education and information she thought she could fill.  This led to establishing a foundation called Health Rebuild.

While in any cancer setting, early detection is key, Cathy thinks that sometime lost in the shuffle is getting in front of cancer through sound dietary practices.  This called on both sides of her brain, the side familiar with life before cancer and the side that now knew about life after a cancer diagnosis.  She puts a priority on optimizing outcomes through treatment, supporting recovery, and then long term health over the course of survivorship. 

The mission of the foundation, Health Rebuild, is a three-legged stool.

The first leg is “Rebuild Your Health.”  It stresses the importance of diet and exercise.  Cathy says maintaining a good regimen at the table and at the gym is at the very foundation of rebuilding one’s health.

The next leg is “Calm Your Anxiety.”  In Cathy’s private practice, she dealt with a lot of people who had eating disorders.  She is fascinated by the connection between food and mood, and notes that breast cancer can often trigger eating habits that can lead to additional anxiety.  

The final leg is “Do What’s Best.”  Cathy says the things one does on a day-to-day basis can have a giant impact on the trajectory of one’s cancer journey.  She says to remember what makes you feel good, such as getting enough sleep, limiting screen time, and eating the foods that make you feel good instead of those which make you feel uncomfortable, all these things are very important.

Additional Resources:

Support Group: Health Rebuild  https://www.cathyleman.com

Cathy’s Blog: https://www.dammadaboutbreastcancer.com

Jim Nedelka is a prostate cancer survivor.  When he learned of his diagnosis, he wasted no time, considered his options and immediately chose radiation treatment.  Because of early detection and his proactive approach, Jim has been cancer free since 2017.

It is difficult to get a screening for lung cancer and for those who are diagnosed, they often face a cruel and inaccurate stigma. Those are just some of the obstacles attached to a lung cancer journey, which are addressed in detail by Nancy Torrison, executive director of the Twin Cities-based A Breath of Hope Lung Foundation.

Alex Ramirez is a colon cancer survivor. When he started feeling fatigued more than usual, he sought medical attention. That doctor visit resulted in a blood test, which led to a colonoscopy, which revealed a cancerous tumor in Alex’s colon, and a diagnosis of Stage Two colon cancer. Following surgery, Alex had to wear an ostomy bag, and faced additional surgery when three times the procedure resulted in infection. Thankfully, Alex went into remission and through a reversal procedure was able to get the ostomy bag removed. He wants to make himself available to anyone who has non-medical questions about their cancer journey.

Nick Pifani needed three different treatment regimens, but survived Stage Three pancreatic cancer.  It took chemotherapy, then radiation treatment, then a Whipple surgical procedure, but he is in remission and has resumed his active pre-diagnosis life of running, swimming and cycling.

Michelle Beck has survived breast cancer not once but twice. Because of a family history of breast cancer, she had an inkling that she, too, would be diagnosed, and that if she were diagnosed, she would get a mastectomy. In 2012, Michelle was diagnosed, but when she saw her diagnosis was a treatable ER-PR+/HER2-, she changed her mind and opted for a lumpectomy. However, she was diagnosed again in 2017, and this time sought a bilateral mastectomy with full reconstruction. She has gone into remission and seeks to help others through her involvement with the support group Breast Friends of Oregon. After beginning as a volunteer, Michelle is now on staff at Breast Friends, and hosts the weekly Breast Friends Cancer Support Network podcast.

Lori Shipman is a survivor of Stage 1A lung cancer. Her journey began with a persistent cough, and after a lengthy chain of events came her diagnosis. But she survived and has returned to an active lifestyle, including swimming, kayaking and running.

Xylon van Eyck endured a difficult journey, but he survived Hodgkin Lymphoma. In addition to a successful career as a broadcaster, he was in excellent health as a competitive cyclist. However, while vacationing in Thailand, he began vomiting blood. Upon returning to his native South Africa, first an ulcer was detected, then a biopsy revealed Hodgkin Lymphoma. Xylon underwent radiation treatment and chemotherapy, but they failed to kill all the cancer cells. He then needed a second round of chemotherapy, which included a higher dosage, that plus a stem cell transplant. After all that, Xylan went into remission. He is extremely appreciative of his life and his health. Xylan cycles, runs his own successful business and lives next to a game preserve, which sometimes results in wild animals sleeping in his back yard.