When I meet healthcare providers for the first time, I ask them if they have ever heard of neuroendocrine tumors (NETs), because my experience shows that many providers are not familiar with this cancer, which I believe delayed my diagnosis and treatment. I now have stage IV carcinoid tumor, a type of NET, which has metastasized to my liver, reproductive organs, peritoneum, and gastrointestinal (GI) tract.
Before my diagnosis, I went to my OB/GYN doctor for my annual Pap smear and mammogram. I didn’t feel right, and I thought I might need a hysterectomy.
A transvaginal ultrasound showed a small shaded area. My gastroenterologist dismissed the shaded area, and didn’t even want to review the scan. Along with severe abdominal pain, vomiting, and nausea, I was in medical limbo for several months before finally being diagnosed with NET.
Because NETs can be similar to other, more commonplace diagnoses, this type of cancer is often misdiagnosed for years. This is why medical providers should not readily dismiss patients’ reports of symptoms, and patients at risk for the disease must understand the potential signs. I had diverticulitis and other GI issues years before I was diagnosed with cancer.
And because NETs can begin in the GI tract, gastroenterologists need to do a better job at fielding questions from patients and looking beyond the common diagnoses of irritable bowel syndrome, menopause, or Crohn’s disease.
I had spots in my colon, and my doctor did not bother to biopsy them. I complained about these issues, and they were in my medical records. As far as I am concerned, these were red flags that should have been attended to, and they turned out to be much more than that.
Be Your Own Advocate
Several months before my diagnosis, I demanded a colonoscopy, and was told I was not due for another 3 years. A routine endoscopy and colonoscopy were finally scheduled, with a biopsy of the colon. The primary tumor was completely missed in these tests. In fact, the surgeon who removed the tumor—which had caused a life-threatening bowel obstruction and allowed the cancer to spread further—told me that the gastroenterologist did not thoroughly scope the colon.
I therefore believe you must be your own health advocate, listening intently to your body and the signals it sends.
Early on in my treatment, I had multiple surgeries, including the removal of my gallbladder and appendix; exploratory abdominal surgery; and subsequent emergency surgery for a bowel obstruction. I eventually enlisted the help of oncologist Lynn Ratner, MD, a specialist in New York who helped to create my treatment protocol; he worked closely with Richard Warner, MD, a carcinoid syndrome NETs specialist and founder of the Carcinoid Foundation.
After 5 months of treatment, I decided to go to Dana-Farber Cancer Institute in Boston, where I saw a GI NETs specialist, Jennifer Chan, MD, MPH.
I finally had my first gallium-68 PET/CT scan, which is the best diagnostic tool to identify some tumors, including NETs. This type of a scan is a must for patients with NET, especially if their disease progresses.
Ultimately, I found Edward Wolin, MD, a renowned NETs specialist, who is my current doctor. I am confident that whatever comes my way now, I believe I am being treated by one of the best in the world. He is a most compassionate and caring doctor; he really cares about us.
My current treatment with Afinitor (everolimus) and Sandostatin (octreotide) has helped with the symptoms, but it will not stop the disease from returning.
Although some may view my experience as a cautionary tale of medicine not functioning at its best, I have now moved forward and begun work as a NETs patient advocate and a health activist.
A Catalyst for Change
I’m using my experience as a catalyst for change within healthcare communities, educational institutions, medical associations, pharmaceutical companies, state and local government, and other avenues. This all led me to create my foundation.
I created the Stifle Cancer Foundation last year. My foundation’s mission is, “I Live Life.” I intend to live life to its fullest every day. Many people with cancer call themselves “cancer patients” or “cancer survivors,” but I am a “cancer thriver.”
I am involved in educating people about NETs in different ways. For example, I was recently honored in Milford, CT, by being given a citywide proclamation recognizing my foundation at the NETs Awareness Month in November 2016. I am currently working with the state’s Rare Disease Action Network, and I spoke to a large crowd on Rare Disease Day. In addition, I present at healthcare professionals meetings as well as nonmedical gatherings, and I recently began appearing as a regular guest on a local radio program.
The Stifle Cancer Foundation for neuroendocrine tumors, and St. Francis Hospital at Smilow-Yale Cancer Centers in Hartford and New Haven, CT, where I have my ongoing oncology treatment protocols with Jonathan Sporn, MD, Chief of Oncology, will host the first-ever NETs symposium in November 2017; I believe this will be the first in the state of Connecticut. John Rodis, MD, President of St. Francis, and Richard Newman, Head of Surgical Oncology at St. Francis, will be working closely with me on formulating this educational platform about NETs.
This will not be a one-time event; there are plans for ongoing education events. I plan to create an in-house NET Cancer Patient Support & Advocacy group at the hospital, and to take my template that I am creating at the cancer center to other hospitals, as well.
The 4 Wings of the Butterfly
My goal is to reach large organizations to get my message across. For example, I have reached out to the American Society of Clinical Oncology and the American Gastroenterological Association to raise oncologists’ and gastroenterologists’ awareness of NETs, and have begun working with patient advocacy groups, such as the Carcinoid Cancer Foundation and the Healing NET Foundation.
My mantra, “Power to the Butterfly,” has become a central theme of my message. The butterfly represents change and metamorphosis as you go through cancer. When you are told you have cancer, you go through various emotional and physical stages, or what I refer to as the 4 wings of the butterfly.
In the first wing of the butterfly, you have fear and shock. As you move from the initial fear and shock wing, you move into the darkest wing, which brings chaos, confusion, and eventually damage control. This includes the grind of treatments, which bring pain and suffering and can also make you feel isolated, depressed, and even harboring resentment, anger, and perhaps pity. The fourth wing represents resolve, acceptance, peace, and spirituality. The fourth wing is the most important: for the butterfly to take off, it needs this last wing.
I have created a cancer crab with the word “WELCOME” at the top. WELCOME is my acronym for Won’t Ever Let Cancer Overcome Me. The multicolored crab represents the various types of cancer. I am having it enlarged for the 2 hospitals where I have been treated, to inspire other patients with cancer.
Earlier this year, I had yet another life-threatening bowel obstruction, followed by radical hysterectomy, a major surgical debulking of my peritoneum, and removal of tumors in the rectum, colon, and small intestine. In addition, I have a very large lesion on my liver that will need to be removed.
Every Day Is a Gift
I am ready for whatever comes my way, including the high likelihood of more cancer and surgeries. There is no remission nor cure for this type of cancer. I would do anything to extend my life, including participating in clinical trials.
With so many acute medical crises since my diagnosis, I feel a very real sense of urgency in getting the word out about NETs. I’m trying to do something as fast as I can to create an education and awareness campaign that will reach as many people as possible.
Time is precious, and every day is a gift. I am grateful for my family, friends, my medical team, and all the compassionate and caring people I have met along the way on my bittersweet journey of cancer.