I Don’t Feel Like I Have Incurable Cancer

Rather than rail against the gods for my misfortune, I’m focusing on raising awareness of this rare and often deadly cancer.


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I wish I had never been diagnosed with cancer, but rather than be filled with regret, I’m choosing instead to see all that I have gained….
— Greta Stifel

A series of medical mishaps has led me to a diagnosis of stage IV carcinoid neuroendocrine cancer and a shortened lifespan. This never should have happened. For months in early 2015, I was plagued with all the signs of a serious illness, including chronic stomach, bowel, and digestive issues; bouts of violent vomiting; unexplained weight gain; and skin flushing and redness, but my symptoms were dismissed by my gastroenterologist as the result of menopause, irritable bowel syndrome, and diverticulitis.

I was prescribed high doses of amoxicillin to reduce bacterial pathogens, which caused even more vomiting. A colonoscopy failed to show any polyps or intestinal obstruction that might be causing my symptoms. Unfortunately, the colonoscopy also missed the cancerous tumor that was growing near my terminal ileum. A subsequent ultrasound of my gallbladder also appeared negative for any blockage within the bile duct or gallbladder that might explain the severe pain I was having.

A month after having these tests, I was rushed to the emergency room with an impacted gallbladder and gallstones. During emergency surgery to remove my gallbladder and appendix, the surgeon also performed exploratory abdominal surgery looking for any signs of cancer. None were found, and still my symptoms persisted.

The carcinoid tumor was finally discovered during a series of imaging scans and exploratory surgery. I was told I could wait 2 to 3 weeks to remove the tumor, by then it had grown so large it caused my bowel and small intestine to become obstructed, necessitating emergency surgery. Although the primary tumor was successfully removed, the cancer had metastasized to my liver and other organs.

Striving to Beat the Odds

When I was diagnosed with stage IV neuroendocrine carcinoid cancer, I was told my life expectancy would be cut short dramatically. I immediately trained and tricked my mind into thinking, “this is not so bad,” even though I knew it is bad. I have a rare incurable cancer, I will never be in remission, and I will face medical headwinds and hurdles every day—a recent angioedema in my throat nearly choked me to death and caused a mild heart attack.

Still, I keep a positive attitude and mindset. I’m hoping the treatments I’m getting will keep my cancer manageable long enough to get me to some promising clinical trials.

Making Every Minute Count

Although I don’t know how long I will live—none of us do—I have enough of a sense of urgency to make every minute count. I have always been an optimistic person, so rather than rail against the gods for my misfortune, I’m focusing on raising awareness of this rare and often deadly cancer not just in the public domain but in the medical profession as well.

Because neuroendocrine cancer is so rare—only about 12,000 people in the United States are diagnosed with it each year1—and not many oncologists have experience treating it, I have to travel out of state for my care. Since my diagnosis, I have had countless surgeries, emergency room visits, imaging tests, and even two near-death experiences. It is difficult enough dealing with the damage the cancer is doing to my body and all the side effects from treatment, I shouldn’t also be burdened with having to travel long distances for care.

To raise awareness and education about neuroendocrine cancers, I began working with the American Gastroenterological Association to add CME credits for neuroendocrine tumors to encourage education about these cancers. All medical professionals, including oncologists, primary care physicians, nurses, and emergency room physicians, also need more training in this cancer and should at least have available resources to provide patients with appropriate referral information.

I work on fundraising, raising awareness, and public policy issues, including health-care reform and increased federal funding for rare diseases and orphan drug research. I am a constituent and Community Engagement Outreach Liaison representing the State of Connecticut's Rare Action Network (RAN), which is part of the National Organization for Rare Disorders (NORD). I am founder of The Stifle Cancer Foundation, a patient support and advocacy foundation.

Leaving a Lasting Legacy

Of course, I wish I had never been diagnosed with cancer, but rather than be filled with regret, I’m choosing instead to see all that I have gained, including the friendship of other patient advocates, cancer “thrivers,” members of my oncology team, and strangers I meet along the way. They have brought me to the place I am in now. I’m at peace, and I know my purpose.

If I can have a positive impact on the lives of others going through a difficult time or, hopefully, prevent others from experiencing what I have gone through, something good will have come out of my ordeal, and I will leave the world in a better place.

In the end, isn’t that what we all wish?

Ms. Stifel lives in Kensington, Connecticut. For more information, visit http://www.stiflecancerfoundation.org/

REFERENCE

1. Cancer.Net: Neuroendocrine Tumor: Statistics. Available at http://www.cancer.net/cancer-types/neuroendocrine-tumor/statistics. Accessed August 31, 2017.

Editor’s Note: Columns that appear in the Patient’s Corner are based solely on information The ASCO Post receives from patients and should be considered solely anecdotal.

 



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