Not all Cancers are in the Pink. Learn about Neuroendocrine Tumors so you don't go undiagnosed like I did.

I sat alone at my kitchen table when a gastroenterologist called with the news, “A mass has formed in your appendix.” I scribbled the details on a notepad and tried to process all the unknowns. Below the name of a surgeon I wrote, “How will I approach this?”

An appendectomy revealed that I had a neuroendocrine tumor. The weeks and months after diagnosis brought more surgeries and a lot of questions and concern about my future. The more I educated myself, the more the fear dissipated.

Neuroendocrine cancers are a relatively rare malignancy (around 5 persons in 100,000) distinguished by neuroendocrine tumors (NETs) that arise in places like the gastrointestinal tract, the pancreas or the lungs. NETs in the gastrointestinal tract are also called carcinoid tumors. Carcinoid means cancer-like, and it’s really a misnomer that occurred historically that can lead to confusion about the gravity of this disease.

Although many NETs are slow growing, they do still metastasize and can be difficult to diagnose. Symptoms may be similar to other conditions or diseases and may not appear until the disease has advanced to the liver. Some NETs are functioning tumors which secrete hormones and can lead to symptoms like abdominal pain, diarrhea or flushing. Find out more about carcinoid syndrome.

Where possible, neuroendocrine tumors are treated surgically. For some patients who have very small tumors without additional metastasis and no lymph node involvement, surgery may be the only treatment they ever need. But for patients with higher stage and grade of tumors and those with carcinoid syndrome, neuroendocrine cancer is a chronic disease with only a few treatment options.

The chemotherapy or radiation treatments that are typically used with others cancers have not been as effective with the slow-growing types of neuroendocrine tumors. To control symptoms or slow tumor growth, some patients receive shots of octreotide (brand name Sandostatin from Novartis) or lanreotide (brand name Somatuline Depot from Ipsen).

This year, positive research has brought the possibility of more wide use of other treatments, including Peptide Receptor Radionuclide Therapy (PRRT)  and the prescription drug Everolimus. 

While medical information helped me understand this disease, that alone couldn’t provide all the answers to my questions or resolve all the changes happening to my body. Building an individualized network of resources for myself and my family allowed me to feel confident in my care and hopeful for the future.

Six Ways to Build Your Resources of Support:

1. Track symptoms on an app.

At my first oncology appointment, my medical oncologist told me, “I want you to be very aware of your body, but not overly aware.” He wasn’t an expert in neuroendocrine cancer, but I will always appreciate his advice. I return to it often. With a phone, tablet, computer or physical notebook, patients or their caregivers can track changes, symptoms and health information that will be useful to decision making. A health app I use that is specific to NETs is available free at carcinoid.org.

2. Find a good listener or two.

Caregivers are helpful to a patient’s understanding of his or her own body as he or she listens to a patient talk through particular symptoms that linger or escalate. Friends or family members that we trust can encourage us in our decision-making process as we evaluate what to do about these symptoms and when to act to them. These listening partners can also lift us away from the negativity that inevitably comes. A good listener finds a helpful balance without minimizing or taking control.

3. Join one or more support groups.

Traditional in-person support groups can be found for NETs and other diseases in many major cities. Find support groups by state for NET’s patients here. 

Online support groups have really grown to surpass many traditional ones. The cancer foundations often have links to educational forums or online support groups like ACOR.org or new ones like Smart Patients.

Other support groups can be found by searching for them in private Facebook groups.

Even though all patients are different, support groups provide a valuable resource of other patients who suffer from similar issues. Participating in support groups can help a patient or caregiver to know what to expect from certain treatments or how to manage home care. Some online support groups or forums have doctors who participate but do not monitor all communication. For that reason, support group users need to check medical information they receive from support groups with their own doctors or with another trusted source of information. Like any community, some discussions can be less than helpful and users need to find a balance in receiving advise from other users without all the information or the expertise to do so.

4. Find out what the experts are saying.

Rare diseases like neuroendocrine cancer aren’t well understood by the average family physician or oncologist. While that does not mean that these health care professionals cannot be an important part of a health team, NETs patients benefit from being seen by or having local doctors consult with specialists or experts who treat many patients with neuroendocrine tumors. These experts present at conferences for other doctors and patients. They’ve also published works that can be found through websites and online searches. Patients do better when they can incorporate this specialized research and knowledge into their care.

5. Discover the right doctors for you and be confident in your choices.

Finding the right doctor can be a daunting process. I’ve seen three medical oncologists; all are listed on the carcinoid.org list of doctors who specialize or are interested in neuroendocrine tumors.

Each has a different way of managing patient care and each has a unique personality. I have also worked with four different health systems to diagnose, treat and manage my disease and other health concerns.

While I find it very helpful that others have encouraged me to see a specialist in my disease, I have also felt discouraged by the practice of some in support groups who imply that patients can only get quality care from two or three experts across the United States.

Finding the right doctor is a very personal decision that takes in financial resources, insurance limits, caregiver support, disease progression, and personal preferences. Do your research and find the right doctor for you. The right team of surgeons, oncologists, and other physicians and health care professionals may not all be in one center, but you can find doctors you like and trust and who will work together.

6. Allow your disease to occasionally be in the background.

When we have a chronic disease, it seems to be at the forefront of our conversations and activities. I personally chose an aggressive approach to my disease, which included four surgeries in 18 months and regular shots to treat my symptoms. I thought I needed to make it all go away—cut it out or cure it completely—to find peace from the oppressiveness of cancer in my life.

Whatever the treatment, we can allow our disease, at times, to be on the back burner of the mind or activities, even if that is only for a few minutes, hours or days. This helps tremendously in emotional health. Some ways to do this: Create times that are free of medical conversations with loved ones. Choose a hobby to pursue that can distract and bring purpose. Listen to music to relax, soothe and uplift. Find pleasure and not always pain in your body where possible with walking, yoga, or other exercise, giving extra attention to clothes and appearance, or enjoying physical affection.

November 10 is Worldwide NET Cancer Awareness Day, a day to inform and educate and to help fund research that will improve treatment options for the disease. For rare cancers, like neuroendocrine tumors, this is particularly important.

For patient’s, these days bring a chance to talk openly—outside of support groups—about our disease and how it impacts our lives. Awareness isn’t for pity or to draw attention to ourselves, but to strengthen each other in whatever it is that we’re facing. No matter what our disease, we all need times to both build and renew our resources of support.

To donate to NETs research go to the NET Research Foundation

Go to the Healing Net Foundation to find more Patient Resources for NETs Patients

Download the NET Primer for your health care professional

Teresa Hirst, author of Flowers of Grace

Guest post contributed by Teresa Hirst the author of Flowers of Grace, a novel inspired by a true story, and the nonfiction book Twelve Stones to Remember Him. Teresa grew up in St. Louis, Missouri, graduated from Brigham Young University with a bachelor’s degree in communications and today lives in Minnesota with her family. She enjoys cooking, sentimental movies, Sunday afternoon walks and great conversations. She was diagnosed with NETs in 2014. Read more about her journey with neuroendocrine cancer. 

Further Reading: 

I'm having major open abdominal surgery. What should I expect? 

I was in shock when I learned my cancer had been misdiagnosed for ten years and now had spread to my liver!

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