A Very Lucky Man

[ohsosad]

Harry,

I had never heard of NET cancer before reading your post. I googled it and it appears it is difficult to diagnose, and the later the diagnosis, the more dire the prognosis. Do you mind my asking? Was your wife's illness diagnosed in a timely manner? I was wondering if you are left with some anger issues with the medical profession. And how long has it been since she died?

Rita

[Wifflesnook]

Oh Rita

Don't worry. You haven't alienated anyone. We are all searchers here, and I've found nothing but empathy for everyone's points of view. Our 52nd wedding anniversary today. I must concentrate upon being grateful for having had almost 50 years with my beloved Pete.

[HAP]

Dear Rita,

Her illness was diagnosed very late--it had already progressed to carcinoid heart disease.

There was a point I was very angry with the medical establishment, but really, I find it hard to get angry with legitimate ignorance. At the time she could have been diagnosed, NET was not even talked about in medical schools because it was considered--based on the evidence they had at the time--so rare that few doctors would ever see a case in their entire professional career. That ignorance also meant virtually no money was spent on research, which meant our ability to detect the disease did not improve at all for about 40 years--and what we did not know about that kept both our knowledge of the disease and the size of the problem largely in the dark.

Things were so bad that we spent as much on Jane's care in the last four months of her life as we spent on research that entire year on the disease. Because Jane was an active science person--she taught high school physics, chemistry and AP biology all at the same time--we did all we could to get double duty out of the money spent on her care. It was the deepest look into an advanced case of the disease that anyone had ever had. I've been told her single case doubled all the knowledge gained about carcinoid/NETs previously. Her death also resulted in the launch of the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute in Boston, a thing they had discussed for some years before that but not set up. Jane was that kind of patient that people remember long after they are gone.

Jane died 43 months and 18 days ago. In mid-August it will be four years since we first heard the words Carcinoid Cancer. In that time, we have gone from about 10,000 cases being diagnosed each year to about 15,000 cases diagnosed a year. It isn't that the disease has become more common; it's that doctors are increasingly aware of the disease's existence and we have begun to develop better diagnostic methods. In the last few years we have developed new types of scans that reveal the tumors where once all we could see were shadows that looked like artifacts that could be easily dismissed. We have two new blood tests in the works as well. But the size of the disease is still unclear in terms of the number of people who may have the disease and not know it. The worst case scenario--based on an autopsy study of about 15,000 random bodies--is that, potentially, 3 million Americans have undiagnosed carcinoid/NETs. This would mean we have a major cancer in our midst that we ignored for 40 years because we could not see it.

But the truth is we really do not know how prevalent the disease is--and likely won't for a considerable time yet. I certainly hope the 3 million number is off by a significant order of magnitude. We just don't know and have no way of knowing with certainty at this point. We do know that about 10 percent of those diagnosed with the disease die each year--about the same number that we diagnose. The good news--if we can say there is good news about a disease that plagues its victims with nearly constant diarrhea and gas that causes extensive and painful bloating--is that many people live ten or more years with the disease with the treatments we now have. The quality of that life is another question entirely.

We have made some progress in treating the disease. Caught early enough, we can surgically remove the tumors before they begin to spread--and before the hormones and peptides they secrete can begin to do really significant damage. Unfortunately, we still only rarely find them early enough. We have some promising drug and radiation therapies that can slow the course of the disease and alleviate some of the symptoms, but nothing that looks like a real cure--not yet.

In 2010, we spent less than $2 million on carcinoid/NETs research in the US. The American Cancer Society did not even have a listing for the disease on its website. This year, the carcinoid/NETs community will raise--and spend--if the current trends hold, about $10 million. That is a significant increase, but still barely a rounding error on what we spend each year on breast, lung, or prostate cancer. There are carcinoid forms of each of those that are particularly deadly and particularly aggressive--and under-studied despite that.

To put that in real terms, when Jane was first diagnosed, Dana-Farber had one full-time person dividing time between research and the clinic and one person dividing her time in the clinic between carcinoid and other gastrointestinal cancers and dividing her research time that way as well. Today, DFCI has two full-time people working in the clinic and the lab, two full time researchers, two additional post-docs, and four lab assistants. They need another clinician to help handle the number of patients they are now seeing and hope that is going to happen this year.

Other programs across the country are seeing similar growth, but the numbers are still too small. Too many patients live so far away from a real specialist with experience with the disease that 700 mile and longer trips that insurance won't pay for are not unusual. I know very few longterm patients who do not face significant financial difficulties as a result of their fight with the disease. We won't discuss the battles they go through with their insurance companies over coverage because I can't do so without the use of expletives one should not use in polite company. I will only say there is no stronger argument for single-payer healthcare in this country than the testimony of carcinoid/NETs patient stories.

Today, I work on finding money for carcinoid/NETs research and raising awareness in the medical and lay population about the disease. I work and speak regularly with some of the preeminent researchers and activists in the field and continue to have a close relationship with the doctor who finally figured out what it was Jane had. Jane and I both knew that cursing people for their ignorance was a pointless exercise. We both believed that in a dark place the best thing to do is figure out how to create some light so you--and others--can see what you are doing. I'm still angered and hurt by Jane's death, but I don't blame any human agency for her death any more than my grandfather blamed doctors for the death of his first wife during the Influenza Pandemic of 1919. We did not know enough to save either of them at the time--but someday, with enough effort, we will know enough to save others.

This certainly is probably way more than you asked for or wanted to know, but I hope it answers your questions.

Peace,

Harry

p.s. I may decide to use an edited version of this on our website at walkingwithjane.org.

[ohsosad]

Harry,

Thank you very much for taking the time to share all that information about NET. You have just educated however many people read these messages. (I do wonder how many that is.)

Rita

[mfh]

Harry, I would put it on Facebook and other social networking sites. This is a great history of NET and we here all know how hard you have worked these going on four years to help save the lives of others in Jane's name.

[feralfae]

Harry,

That is a great piece of writing on NET and I do hope you post it on WalkingwithJane.org and elsewhere. Thank you for all you are doing. Dedication to a cause and a crusade such as you have is both commendable and inspiring.

Thank you.

fae

[kayc]

Harry, Thank you for sharing the information on NET. I know you've helped our own fae, and others that you will never know.

[MartyT]

♥

[HAP]

I'm waiting on a piece of fact-checking from DFCI--and I'll need to figure out a new opening paragraph, but it is on the list of things to run.

--H.