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Being Proactive About Cancer,
It Started With A Volcano...
On our honeymoon in 1982 Scot and I incorporated a 3 day backpacking trip in a volcano that is "Haleakala National Park" on Maui.
I ended up with a bad sun burn on my forearms. This was pre-sunscreen awareness.
A few years later a classmate at the University Of Arizona, noticed I had a mole on my left forearm that had bled.
She was a receptionist in a Dermatology office and told me I should make an appointment, soon, to have it examined. I made an appointment right away. It turned out the mole was a melanoma, the fastest growing, deadliest type of skin cancer.
Fortunately, the tumor was removed surgically with wide margins and had not spread to the lymph nodes. I still have a dip on my left forearm as a reminder of how fortunate I was to have a classmate who coincidentally worked in a Dermatology office and made me aware of something I knew nothing about. She likely saved my life.
My melanoma experience in 1985, Scot’s prostate cancer in 2004 and my triple negative breast cancer in 2022 were all caught early because we were proactive in getting medical care. Scot and I both feel very fortunate these cancers were just bumps in the road. We're also incredibly thankful for friends in the medical field and continued advancements in medical science.
TREAT WHAT NEEDS TREATING THEN LIVE FULLY
Family History. Reasons For Optimism.
Family History. Reasons For Optimism.
Dan, Barb, Frank
September 2006 Dan had emergency surgery for a small bowel obstruction and was diagnosed with carcinoid cancer.
June 2007 Barb had emergency surgery for a small bowel obstruction and was diagnosed with metastatic carcinoid cancer.
2010 Frank was diagnosed with small bowel carcinoids when being seen at NIH as part of the study. He had a small bowel resection. Frank's resection was not done under emergency circumstances but rather scheduled at the National Cancer Institute which is on the NIH campus.
Frank was also diagnosed with Non-Hodgkins Large B Cell Lymphoma during his testing at NIH. He received radiation back in Montana as recommended by NIH and his local Oncologist.
Up To 50% Chance
I have up to a 50% chance of inheriting the germline mutation(s) responsible for familial carcinoid cancer.
Likewise I have an "up to" 50% chance that I have not inherited the familial carcinoid germline mutation(s).
Even if I were to inherit the faulty gene, it does not mean I will absolutely develop carcinoid cancer.
The genetic inheritance pattern is known as "autosomal dominant with late and variable penetrance." This means:
"When a parent has a dominant gene, there is at least a 50% chance that any child they have will also have the trait (faulty gene).
Some dominant genes can have variable expression. This means that some people have milder or more intense traits than others. Another important characteristic of dominant genes is that, in some cases, they can have reduced penetrance. This means that sometimes a person can have a dominant gene copy but not show any signs of the gene.
If a person has inherited a cancer susceptibility gene, it does not mean they will automatically develop cancer. It simply means that the person has inherited a mutation in a gene that gives them a higher chance of getting cancer than someone without the mutation." The average age of onset has been 60 yrs old but according to Dr. Wank, the study is seeing that age getting lower with second generation patients.
The understanding is that Dad or Mom carried the faulty gene. At this time we don't know which of them carried the mutation. They may have carried the faulty gene but never developed the disease or they may have died with late onset carcinoids that never caused an intestinal blockage.
You don't have to become an expert on NETs but it helps to know where to find the experts.
I believe Barb gained 5 or more years by participating in a drug study with Dr. Anthony and other NET specialists in advancing the science of medical treatment for metastatic carcinoids. She was a study participant for the drug known as Everolimus. Barb's participation helped countless other NET patients get access to this vital drug that has extended lives of patients with metastic NETs.
This photo was taken in Lexington, KY at the University of Kentucky Medical Center.
One of my goals with this website is to share information with the next generation of family members to help them navigate a visit to NIH if they choose to participate in the NIH study.
Whether you're participating in the study or not, I hope this site will provide a resource for learning more about this very rare (inherited) familial cancer that has affected our family.
Carcinoids are a subset of neuroendocrine tumors (NETs) which are a slow growing type of cancer. The National Institutes Of Health (NIH) clinical trial "The Natural History Of Familial Carcinoids" has been studying the very rare incidents of (inherited) familial NETs since 2008. Barb & I became the 7th family to join the study in 2008.
Link To Study Below
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