Looking back at NET cancer journey

Monday marks the two-year anniversary of Jane’s death just four months after she was diagnosed with NET cancer.

Over the last few days I have reviewed the progress we have made against the disease since that date. I’d like to say we have made enormous strides in those two years. I’d like to say we have NET cancer on the run and that in a short time we will have brought it to heel. But I would have to lie to do so.

…lack of resources remains an issue.

But I would equally have to lie to claim we are no further along than we were when Jane was first diagnosed. There is water in the glass–just not enough to say the glass is half empty or half full: more like a quarter full or three-quarters empty. That is not to say there has not been significant progress made–just not enough to say a cure is at hand.

Our NET cancer ‘What ifs…’

In the fall of 2007 a group of researchers met to talk about NET cancer and carcinoid syndrome and what the goals for future research should be. They looked at what they knew–precious little–and what resources they had to work with–even less– but set ten ambitious goals despite all that.

We are still at the basic science stage…

They had not gotten very far with most of those goals by the time Jane was diagnosed almost three years later. Our real treatment options were slim–and made slimmer by the advanced state of Jane’s disease. I cannot say how often I find myself playing the “What if…” game about the timing of Jane’s diagnosis. If her NET cancer had been discovered even two years earlier, would she still be here today?

She might have lived longer, but I am not sure what quality of life she would have had–nor whether it would have been any different at the end than it was. We just have not come far enough yet.

Raising NET cancer awareness

The reality is that once we passed the surgical cure possibility stage, NET cancer was going to be the death of her. That truth has not substantially changed in the last two years. Late stage NET cancer patients are fighting a delaying action that forces them to weigh longer life against the quality of that life.

But the odds of being diagnosed earlier have improved. The first recommendation of that 2007 NET cancer summit was to improve the education of physicians about the disease. While in service training of primary care physicians remains weak, NET cancer has found its way heavily into pre-service training of young doctors. My niece, who is in medical school, tells me there was a high level of emphasis in her courses and textbooks on NET cancer and carcinoid syndrome.

…we stand on the brink of substantial change…

We need to do more training of primary care doctors who are already in practice, though. And the good news is that there seems to be the beginnings of some efforts in that direction as well. One of the priorities for the Walking with Jane Dybowski Fund at Dana-Farber is training existing primary care physicians to recognize the signs of NET cancer when they see it.

And we need to make the general public more aware as well. That may prove a tougher nut to crack.

Better NET cancer detection

We have also made some progress on developing more accurate scanning protocols to help detect the disease, another goal the summit listed. But development of blood tests, the second goal on their list, has not changed as much since Jane’s death as I would like. However, there is a new 5-HIAA blood test in trials that was reported at a patient conference in New Orleans earlier this year that looks promising. It will initially, I suspect, be a bit expensive for routine blood panels–and it only tests for the by-products of serotonin and not the myriad of other hormones NET cancers can produce–but it is a start. In the long-term, it could make a substantial difference in our ability to detect carcinoid tumors at a point where surgery will take them out.

Better NET cancer research tools

We’ve also developed animal models for the disease and have seemingly learned how to reliably grow new NET cancer cell lines in the lab. Both those things will make a big difference in developing new drugs and other treatments in the years ahead.

…we need to make the general public more aware…

The plan also called for the development of regional centers of expertise that would concentrate more experts on the disease so they could more easily communicate with each other and develop new ways of treating patients better and more rapidly–and those, too, have been created. We are getting better at standardizing the terms we use to talk about the disease–though we have a way to go there yet it seems to me.

And while we do not have the level of understanding of the disease at the molecular level we might like, we stand on the brink of substantial change there as well in the months ahead as the results of the DNA sequencing being done at Dana-Farber begin to bear fruit.

Slow progress on NET cancer treatments

But there has not been huge progress on new treatments for NET cancer. There are lots of trials going on and we have had two new drugs approved for treating pancreatic NETs. But none of those new treatments really shows promise as a cure. They alleviate symptoms, slow the progress of the disease, and create, for some patients, a better quality of life–but early detection and surgery remains the only real curative option.

Our real treatment options were slim…

We are still at the basic science stage in many respects.We seem to be building a solid foundation from which we can hope a cure will evolve.

Creating more NET cancer resources

But lack of resources remains an issue. We simply cannot finance enough research to move things along more quickly. We are, as Matt Kulke, the head of the NET cancer program at Dana-Farber, told one of our reporters this week, caught in a Catch-22 situation: we need money for research but can’t get that money from government or drug companies without providing them with evidence for the research that costs money we don’t have to do the research.

There is water in the glass…

We’ll keep working on the funding side. It looks like Walking with Jane will have generated about $92,000 for cancer research this year, more than two-thirds of it for NET cancer. We want to double that amount next year. If you can help, either with money or ideas about how to raise it, we’d like to hear from you.

One way or another, we are going to kill NET cancer.