It’s complicated

This post is a rant about the complexities of my disease. So, buckle up.

Neuroendocrine cancer is rare; some sources say it affects as few as 6 in 100,000 people worldwide. There are just not enough people studying this. There are not enough specialists. There are not enough new doctors entering this field. There are not enough clinical trials. And, there are not enough people being diagnosed, because NETs (Neuroendocrine Tumors) can masquerade as other issues for years if not decades.

I’ve subscribed to many newsletters, read a lot of books/articles, watched many interviews, and listened to hours upon hours of podcasts. Here are just a few of the contradictions in the field, in no particular order.

• Compared to other cancers, NETs usually grow slowly, but not always.
• If a NET grows quickly, it might be reclassified as a NEC (Neuroendocrine Carcinoma).
• NETs are sometimes well-differentiated (but possibly still look abnormal under a microscope) and sometimes poorly-differentiated.
• NETs may cause diarrhea, but not always.
• Somatostatin analogs, the standard treatment, may cause diarrhea, but not always. Also, for some people they may help with carcinoid syndrome, but not all. Evidence shows they probably help extend a patient’s life.
• NET patients might develop carcinoid heart disease.
• Most patients have a primary tumor and metastases, but many only have a primary tumor, may not know the location of their primary, or not have any evidence of tumors at all.
• Some people have a genetic NET marker, but not all. Some may have “a genetic marker of unknown significance“.
• Symptoms may vary depending on where the tumors are located.
• Other organs might be affected in unknown ways.
• Some NETs produce hormones, while others don’t. If they do produce hormones, it’s probably mostly made up of serotonin, but there may be others that are secreted as well.
• Most NETs have receptors, while others don’t.
• Some people’s NETs show up well in imaging like CT scans, MRIs, and DOTATATE PET, and others don’t.
• Some cancer doctors place great stock in markers like 5-HIAA, ProBNP, and Chromogranin A, and others look at those with a grain of salt.
• NETs might respond to somatostatin analogs, targeted therapies, chemotherapy, and/or immunotherapy, but what works for one person might not work for another.
• Sometimes surgical removal of NETs can cause symptoms to go away, but sometimes it doesn’t.
• NETs rarely change from one grade to another, but it does happen.
• If a person has multiple NETs, some might be a certain grade and others a different grade.
• Most people have some combination and/or various levels of flushings, fatigue, pain, vomiting, rashes, low blood sugar, heart palpitations, ulcers, frequent urination, increased thirst, dizziness, wheezing, shakiness, feet swelling, and/or weight loss, but not all. All of these may be constant, or have individual triggers.

As you can see, I’ve highlighted words like “might, most, may, and/or, probably, usually, may vary” etc. This illustrates the dizzying amount of variation and exceptions that NET patients have to deal with. We sometimes call ourselves “zebras” because every one of us is slightly different in how our disease presents itself.

And of course, just because a person has NETs doesn’t mean they don’t also have something else going on, and diagnosing and treating THOSE can create a whole new complicated challenge. Wheeeeeee!