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Being Proactive About Cancer,
It Started With A Volcano...
In 1982 Scot and I did 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.
A few years later a classmate at the University Of Arizona, noticed I had a mole on my left forearm that had bled.
She worked in a Dermatology office and said I should make an appointment, soon, to have it examined. I made an appointment right away. The mole was a melanoma, the fastest growing, deadliest type of skin cancer.
The tumor was removed surgically before it had a chance to spread to my lymph nodes. I still have a dip on my left forearm as a reminder of how fortunate I was to have a classmate who recognized the potential problem and said something. 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. We were proactive in getting medical care. Scot and I feel very fortunate these cancers were just bumps in the road. We're also incredibly thankful for the NIH researchers and staff who continue advancing medical science.
TREAT WHAT NEEDS TREATING THEN MOVE ON, LIVE FULLY
Family History. Reasons For Optimism.
Family History. Reasons For Optimism.
Frank, Dan and Barb all inherited the faulty gene(s) resulting in familial carcinoid cancer. Stacy inherited the faulty gene(s) from her Mom.
(In the field of medicine, the term carcinoid is being replaced by the term neuroendocrine tumors aka NETs. I'm using both terms interchangeably.)
September 2006 Dan had emergency surgery for an obstruction in his small bowel. He was diagnosed with carcinoid cancer. Dan's tumors were localized to the small bowel, they had not spread to other areas of the body. His local Doctor monitors him with periodic scans and he has had no carcinoid recurrence since 2006. Dan donated blood and tumor samples to help the NIH study.
June 2007, Barb had emergency surgery for a small bowel obstruction and was diagnosed with metastatic carcinoid cancer. The cancer had already spread beyond the small intestine by the time Barb had emergency surgery. Barb donated blood and tumor samples to help the NIH study.
2009 Frank's first visit to NIH revealed he had Non-Hodgkins Folicular B-Cell Lymphoma. Testing did not show any carcinoid tumors.
2011 May, Frank's second visit to NIH revealed carcinoid tumors.
2011 July, Frank had abdominal surgery and had a total of 12 tumors removed from his bowel. The tumors were found by the surgeon running their hand along the bowel to feel the tumors in the submucosa lining of the bowel. Frank has periodic surveillance and has had no recurrence of carcinoids since surgery in 2011.
2018 in Montana Frank was diagnosed with Large B-Cell Lymphoma in his right trochanter of the upper right leg. He underwent chemo and radiation to get the lymphoma under control.
Frank's bowel resection was not done under emergency circumstances but rather scheduled at the National Cancer Institute which is on the NIH campus. Frank donated blood and tumor samples to help the NIH study.
April 2025 Stacy learned through the NIH testing that she had developed tumor(s) in the small bowel. Stacy suspected something might be going on because she had experienced discomfort in an area of her abdomen. However, it was still unsettling to discover the cause was NETs. The good news was the cancer was discovered early while the tumor was very small, could be completely removed and had not spread to her lymph nodes. Stacy had the small bowel resection at the National Cancer Institute part of NIH in July of 2025. Her prognosis is excellent.
Pat, Ed, Tim, and I do not know whether we inherited the gene associated with this condition. We've all participated in the NIH study to one degree or another.
Mom and Dad didn't know whether they carried the faulty gene. One of them passed the mutation on to Frank, Dan, and Barb, as shown by their development of the disease.
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 did not inherited the familial carcinoid germline mutation(s).
Even if I have inherited 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." .
My understanding is that either 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.
Mom & Dad lived into their 90's.
For more about genetics go to the resources page and click on the University Of Utah genetics education link.
WHAT DETERMINES CARCINOIDS ARE FAMILIAL VS SPORADIC?
Strongly suggests familial disease when there is:
More than one first-degree relative affected
Multiple generations affected
Similar tumor types (e.g., small bowel NETs) across relatives
⚠️ Important:
A family pattern raises suspicion but does not confirm familial disease without genetic evidence.
You don't have to become an expert on NETs but it helps to know where to find the experts.
People with carcinoid tumors are frequently misdiagnosed for many years with IBS or other gastrointestinal problems. Barb was told several times by her primary care doctor and ER doctors that she probably had giardia from bad water when camping. Barb was sent home with antibiotics several times.
Barb thought she was experiencing food poisoning because of stomach aches and throwing up. The symptoms weren't due to giardia or food poisoning. The symptoms were due to carcinoid tumors. Years ago the time from symptoms to proper diagnosis was 6 to 9 years. Barb sadly experienced this problem for years until she had a full blockage of the small bowel resulting in emergency surgery by a talented general surgeon but not a Carcinoid Specialist Surgeon. There is a big difference.
Imagine the difference if Barb could have known she had a 50% chance of inheriting carcinoid tumors WHEN she was first experiencing multiple episodes of stomach pains or throwing up or having diarrhea? She would have known to seek out a specialist. She wouldn't have accepted repeat diagnosis of giardia and prescriptions of antibiotics. She would have had a reason to insist Doctors consider the possibility of a carcinoid tumor because of her family history. If Barb had known she had a chance of inheriting NETs, the saying "If you don't suspect it you won't detect it" would've come into play as she made sure her Doctors knew her family history with a rare disease so they would look at the possibility of her symptoms being due to carcinoids. Barb wasn't that lucky. Sadly. But Barb's experience and participation in multiple studies has been hugely beneficial to so many others, including me.
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The photo above is of Dr. Pommier a Carcinoid Specialist and Oncology Surgeon at OHSU in Portland. He did surgeries on two of my friends and he met Barb at a conference Barb, Pat and I went to in Colorado. Barb was not a patient of Dr. Pommier.
Barb did participate in a drug study with another carcinoid specialist, Dr. Anthony, who we met in New Orleans and later in Kentucky. I believe Dr. Anthony's study at KU contributed several years to Barb's life.
Barb participated in a clinical trial for the drug Everolimus. Barb benefited from participating in the trial and she helped countless other NET patients get access to this vital drug that has extended lives of patients with metastatic NETs.
Dr. Eric Liu is a specialist surgeon for patients with NETs. He did several de-bulkings of Barb's tumor burden so that she could live longer. He is part of the Rocky Mountain Cancer Centers. Dr. Liu, like Dr. Pommier, treats patients from all around the world.
Dr. Allen Cohn is a medical Oncologist who works hand in hand with Dr. Liu at RMCC and specializes in NETs.
GOALS OF THIS WEBSITE
To share our family cancer history with 2nd generation family members who are coming of age to decide if they want to participate in the natural history of familial carcinoid study at NIH, or not.
To provide accurate information normally included on medical history forms when seeing any physician.
To help my nieces and nephews navigate a visit to NIH, if they choose to participate in the NIH study.
To make it easy for myself to find all this information all in one place as needed.
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.
There are now over 100 families and 800 individuals participating in the study.
CONS OF PARTICIPATING IN THE FAMILIAL CARCINOID NIH CLINICAL TRIAL
Takes time away from home and work.
Involves travel, expense.
Apprehension of the unknown.
Exposure to radiation, although limited.
Anxiety producing.
Not as fun as Disneyland
PROS OF PARTICIPATING IN THE FAMILIAL CARCINOID NIH CLINICAL TRIAL
If tumors are found, you have them removed before they spread and you get on with life.
Gives you a baseline if tumors aren't found. (and hopefully never will be)
Why Have I Participated In The Clinical Trial?
I've participated for selfish reasons. I don't want to go through what Barb went through. I want to help advance medical science, of course, but mostly it scared me to think I could be harboring carcinoid tumors and not know it until they caused a blockage or metastasized.
Early detection has saved my life twice since age 28 and saved Scot's life at age 43.
I've been to NIH for testing six times; 2008, 2010, 2012, 2015, 2019 and 2025.
Every visit has helped advance diagnostics by proving which tests are best at detecting carcinoids and which tests don't need to be done. Every visit has helped researchers make advancements in understanding the natural history of the disease and aided in the goal of identifying specific gene mutations affecting families.
Link To Study Below
Visiting Barb At The University of Kentucky Medical Ctr. Clinical Trial
Visiting NIH With Stacy For Her First Visit, April 2025
2019 Visit With Pat & Tim
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