First purpose
30 Net Facts in 30 Days has taken five moths to pull together. It grew out of discussions with a number of people about one of the central problems facing NET cancer patients: Too few primary care practices even know the name NET cancer, let alone its symptoms.
The day my wife and I heard her diagnosis, the doctor’s opening words were he had “never heard of this form of cancer before.” That was in August of 2010. Most newly diagnosed patients would likely hear similar words today, if their doctor were being fully honest with them. I meet PCPs and NPs with great frequency. I’ve had two dermatologists tell me they’d heard of NET cancer because of a rash that appears in the late phases of the disease. The rest plead ignorance.
Second purpose
But I wanted the campaign to do more than educate medical practitioners. The general public is equally unaware of the disease despite it having more patients–and frequently more diagnoses per year–than other diseases that have become nearly household words. As a result, wherever possible, we’ve tried to stick to everyday language.
Twitter posts have to be short, so most days I’ll post commentary as a separate post on this site to take things a bit further, if you’re interested.
How you can help
A new fact will be added to this post each day for the month of November. Those facts will also be posted on Walking with Jane’s Facebook page and on our Twitter page. Feel free to copy and post each fact as it becomes available on your own social media page.
And please share this information with the medical professionals in your life.
Daily Posts
November 1: The number of new diagnoses of NET cancer in the US is rising faster than other cancers: an over 6-fold increase from 1973 (1.09 per 100 000) to 2012 (6.98 per 100 000). #30NETfactsin30days Commentary
November 2: NET cancers begin in neuroendocrine cells, a type of cell found throughout the body with traits similar to nerve cells and hormone-producing (endocrine) cells. #30NETfactsin30days What are neuroendocrine cells?
November 3: NET cancers commonly start in the gastrointestinal tract (GI) and are the second most prevalent form of GI cancer in the US. While neuroendocrine cancers frequently start in the gastrointestinal tract, they can form almost anywhere, including—but not limited to–the lungs, thymus, testicles, and ovaries. What are incidence and prevalence?
November 4: Neuroendocrine cancers are very diverse. Many low-grade, well-differentiated neuroendocrine tumors are slow growing, but high-grade, poorly-differentiated neuroendocrine carcinomas can be aggressive. #30NETfactsin30days
November 5: NET cancers can produce hormones in life-altering quantities. Some, but not all, neuroendocrine patients have symptoms related to hormone production. Commentary
November 6: Treatment options for neuroendocrine cancers depend on features, including pathology (differentiation status, grade), where and how far it has spread, whether there are symptoms related to hormone secretion. #30NETfactsin30days #NETcancerday #LetstalkaboutNETs
November 7: There may be many undiagnosed cases of NET cancer. Autopsy studies found NET cancer in nearly one percent of the population. That’s potentially 3 million undiagnosed cases in the US alone. #30NETfactsin30days #NETcancerawareness #Letstalkabout NETS #cureNETcancernow (This is the one that keeps me up at night.)
Week Two
November 8: NET cancer patients are often given multiple incorrect diagnoses before being diagnosed. It often takes 5-7 years from first symptoms to diagnosis. Recognizing these symptoms to make an early diagnosis is critical. #30NETfactsin30days #NETcancerawareness #Letstalkabout NETS #cureNETcancernow Commentary
November 9: Many NET cancers are diagnosed at an advanced stage after they have already spread. NET cancers discovered earlier are often discovered incidentally on testing done for something else.
November 10: Symptoms of NET cancer can include flushing, diarrhea, intestinal bloating, sudden mood shifts, high or low blood pressure, heart disease, insomnia… If it’s a symptom of too much of particular hormone, it could be NET cancer. #30NETfactsin30days #NETcancerday #LetstalkaboutNETs #cureNETcancernow Commentary
November 11: Patients with carcinoid syndrome can experience symptoms of flushing and diarrhea related to serotonin production by their tumors. Elevated serotonin can be detected using blood and urine tests (5-HIAA). #30NETfactsin30days #NETcancerday #LetstalkaboutNETs #cureNETcancernow
November 12: Constant diarrhea or 4+ loose stools per day is not normal. It can be a symptom of NET cancer and carcinoid syndrome. #30NETfactsin30days #NETcancerday #LetstalkaboutNETs #cureNETcancernow
November 13: If a woman is having hot flashes, it could be a sign of NET cancer, not menopause.
November 14: NET cancer can cause symptoms including pain, abdominal cramping, or cough that are related to the effects of the tumor on normal organs. Commentary
Week Three
November15: Another common site for NET cancers to start is the pancreas. Pancreatic NETs can also secrete hormones, including insulin, gastrin, glucagon, and others, with life-altering results.
November 16: A persistent cough is not always an allergy. Sometimes it’s a symptom of a NET cancer in the lung.
November 17: Jane’s Birthday–NET cancers may remain small before spreading. The cancers often spread to the liver where they can be numerous and large in size. Commentary
November 18: NET cancers occur nearly equally among men and women. Commentary
November 19: If a NET cancer is discovered early enough, surgery can sometimes offer a cure.
November 20: For many patients with advanced NET cancer, cure may not be possible. But we have some drugs and procedures that can slow growth of disease and reduce tumor load and symptoms to improve quality of life.
November 21: There have been improvements in the survival of patients with advanced neuroendocrine tumors in recent years related to approval of new treatments. (Most treatments for neuroendocrine cancers are relatively new.)
Week Four
November 22: Aretha Franklin and Steve Jobs both died from NET cancer. US President Dwight Eisenhower was discovered to have had a form of NET cancer (paraganglioma) after his death. Commentary
November 23: Elevated levels of serotonin in patients with carcinoid syndrome can affect the valves of the heart, usually causing the valves on the right side of the heart to not work normally. Carcinoid Heart
November 24: NET cancers can affect people of all ages. While it was once believed NET cancers were a disease of those over 50, we have seen increasing numbers of younger patients in recent years—some as young as nine.
November 25: While NET cancer was once considered a rare disease, it may have crossed the line for the legal status of that categorization (fewer than 200,000 patients).
November 26: NET cancer is not like other cancers. When you find one, seek out a neuroendocrine cancer specialist. Carcinoid.org maintains a list.
November 27: Multidisciplinary care–evaluation by specialists from multiple disciplines of medicine–is critical to formulating the best treatment plan for NET cancer patients.
November 28: Finding NET cancer early is a key to a long-term positive prognosis. There is currently no universal screening test for neuroendocrine cancer. It is one of the Holy Grails for researchers.
The last two
November 29: In most cases, we do not know why patients develop NET cancer. In some patients, there is an inherited predisposition to developing neuroendocrine cancers and other endocrine disorders.
November 30: Pheochromocytoma and paraganglioma are rare forms of NET that form in nerve tissue inside (pheochromocytoma) or outside (paraganglioma) the adrenal gland. They can make catecholamine hormones.
