Update on the Stuart Scott story
For those of you who don’t know, Stuart Scott of ESPN died this weekend of cancer. Some reports early in the day said he may have died of exactly the same form of NET cancer that Jane had. An article on Sportsgrid, which posted the earliest report of this, now says they, “have been contacted by the PMP Research Foundation, which noted that Stuart likely had appendiceal adenocarcinoma, another type of tumor that is more often treated with the kind of systemic chemotherapy Stuart underwent. This tumor often leads to pseudomyxoma peritonei, which is uniformly fatal without treatment.”
I blew it–and I am truly sorry.
If this is correct, then Scott’s cancer was even more rare than carcinoid/NETs. Most mainstream media continue only to say he had an unspecified intestinal cancer that was not colon cancer. Given their errors in the past, that may be a safer course.
An apology
I apologize for moving too quickly on that initial report. Unfortunately, I have seen the mainstream media foul up stories about high-profile NET cancer patients too many times. I too often wonder what might have been different had the true story of Walter Payton, Dave Thomas or Audrey Hepburn been told made it into the newspapers in the years before Jane’s diagnosis.
…Scott’s cancer was even more rare than carcinoid/NETs.
And much as I wish I could say the media did a better job on Steve Jobs. They didn’t. And many carcinoid/NETs patients are now suffering the consequences.
Carcinoid/NETs is fatal
None of this changes the reality for patients. Mainstream doctors and oncologists continue to tell carcinoid/NETs patients it is all in their heads. When they finally get it right–and many times they never do–they operate to remove the tumors they have found. They then declare the patient cancer free and ignore all signs to the contrary.
I apologize for moving too quickly on that initial report.
For the record: there is no cure for carcinoid/NETs unless it is caught when there is only one tumor. That only happens by accident because patients with just one tumor are rarely noticeably symptomatic. The disease is eventually fatal unless something else kills you first. People do die in fires and auto accidents. Your death from those things does not mean you didn’t have a fatal cancer–just that something else killed you first.
Complicating the quality of life issue
The quality of life for many carcinoid/NETs patients is bad enough physically. It can involve frequent abdominal pain, constant diarrhea, insomnia, painful gas and bloating, as well as flushing, and fainting caused by low blood pressure. To be called crazy or be told you are making things up by your doctor–and I’ve heard both things related by patients–is worse than unhelpful: it is often fatal.
…there is no cure for carcinoid/NETs…
Jane died of carcinoid/NETs. She died, in part, because one of her doctors told her that her disease was all in her head. She did not trust another doctor for years. She died, as one of her doctors told me, because she defeated her disease the only way anyone ever has beaten this disease: by dying and taking it with her.
NET cancer patients are not crazy
That is reality for NET cancer patients. They have a horrible form of cancer for which we have no cure and for which even our best palliative treatments are too often ineffective. At the end, it often strips away every last shred of dignity. They are not crazy. They are physically ill with a disease that is difficult to detect and that will kill them.
…quality of life for many carcinoid/NETs patients is bad enough…
I keep hoping the media will eventually call a high-profile death from this disease the death from NET cancer that it is. That is probably too much to hope for, however, in a world where most doctors can’t get it right in the first place. Lay people cannot be expected to get things right when doctors routinely don’t.
Into the future
I feel badly about getting the Stuart Scott story wrong this morning. In hindsight, I should have let things play out a bit further before I jumped into the fray. But it looked like I had everything right at the time and I just couldn’t let what happened with Steve Jobs happen again. I blew it–and I am truly sorry.
They are not crazy.
But let’s make this the year we finally put this disease in the minds of every doctor and every American. Educate yourself about the disease. Educate others about the disease. Only that can change the current deadly realities.
(Editor’s note: This is a revised version of an earlier story, updated with new information. The most common form of NETs often starts in the appendix. I will continue to update this story with regards to Scott as more information becomes available.)
–Westport High School yearbook
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