An angry question

I write for a wide variety of social media on wide variety of topics ranging from grief and cancer to politics, religion and philosophy. Sometimes, the topic of carcinoid/NETs gets a brief mention in those places because it has driven so much of my work and thinking over the last four years since Jane’s diagnosis.

I’m still angered and hurt by Jane’s death…

People in those other forums sometimes ask about NET cancer and what it is and why it matters to me. But earlier today I was asked a question I had not heard before: Did the doctors’ failure to diagnose Jane’s illness in a timely fashion make me angry at them. It is not a question I really thought very much about until today–and I wondered why that should be.

Angry ignorance

There was a point I was very angry with the medical establishment. But really, I find it hard to stay angry at 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.

…I wondered why that should be.

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 fatally limited.

A rational–not an angry–response

Things were so bad in 2010 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 had.

 …I find it hard to stay angry at legitimate ignorance.

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 the kind of patient people remember long after they are gone.

Angry ignorance 2

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.

Jane was the kind of patient people remember long after they are gone.

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 at least one new blood test 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.

How angry does this make you?

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 we ignored for 40 years because we could not see it.

Jane died 43 months and 18 days ago.

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.

Angry symptoms

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.

We just don’t know…

The quality of that life is another question entirely.

Progress is slow

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.

… about 10 percent of those diagnosed with the disease die each year…

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.

But there is progress

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, though about half of all the money spent on researching the disease came through them.

 …we still only rarely find them early enough.

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.

Concrete example

To put that increase in funding 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.

…still barely a rounding error…

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.

Some things to make anyone angry

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.

…Dana-Farber had one full-time person dividing time between research and the clinic…

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.

Creating light in dark places

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.

We won’t discuss the battles they go through…

Jane and I both knew that cursing people for their ignorance is 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.

Angry at no human

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 1918-1919. 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.

…cursing people for their ignorance is a pointless exercise.

But to do so means continuing to find new sources of income to keep growing the size of the cancer research pie. That’s not an easy task when it seems like everyone already gets hit by a thousand different worthy causes looking for money every day. But if we re going to see the day that this cancer dies, it is what has to be done.

The road ahead

Later this week, I’ll unveil two new events we hope will help us continue moving forward. Of course, you can also always visit walkingwithjane.org/contribute.