Finding NET cancer specialists

“We need more specialists in NET cancer,” someone said to me this weekend.

They’re right. We do need more NET cancer specialists and we need them more nicely distributed around the country, as well. As seems to be the case with too many of the more obscure cancers, if you are outside a major metropolitan area your chance of finding someone close to home with lots of experience dealing with NET cancer is somewhat on the slim side. The task is not, however, impossible.

…we will all need to help.

I have just updated the section of the NET Cancer Resources page with the names of nine major cancer centers that offer specific programs for NET cancer and carcinoid patients. Each of these is doing significant amounts of research on NET cancer as well as treating a greater volume of NET cancer patients. That is no promise the treatments you are offered at any of them will be better than anywhere else, but it will provide you with a starting point in your search for a doctor. That page also includes a link to the Carcinoid Cancer Foundation‘s list of doctors with experience in treating NET cancer.

NET cancer geography

I suspect there are other cancer centers with expertise in NET cancer as well and as I find them I will add them to the list.

They have emotional skin in the game.

But even a cursory look at the list will show people in large sections of the country will find getting a local oncologist with lots of expertise in NET cancer is a difficult task. Part of that also has to do with the relatively small number of cases diagnosed each year. With only about 120,000 diagnosed patients at any given time in the US, there are likely fewer than 2000 doctors working a majority of their time on NET cancer patients.

The NET Cancer Walker

NET cancer research problem

Part of my reply to the person I talked to this weekend was we also need more people working full-time on the research aspect of NET cancer as well. Again, because the cancer is considered so rare–we diagnose between 11 and 12,000 patients a year–coming up with the funding for research is equally daunting. This year, by my best estimate, funding in the US from all sources will total less than $4 million.

Higher level trials will be even more expensive.

iCancer’s attempt to raise money for the NET cancer eating oncolytic virus developed in Sweden nearly two years ago paints a dismal picture of the challenges we face. The fund was established about three months ago and only recently topped $100,000 against a $1.6-3.2 million goal. At the current rate of fundraising, the group will be able to fund a minimal Phase I trial in about four years. Higher level trials will be even more expensive.

NET cancer road

Most of the MDs who are focused on NET cancer divide their time between treating patients and doing research. They understand how critical it is to make new discoveries about the disease–and to find new NET cancer treatments. They have emotional skin in the game. But you can only pursue so many avenues with limited funding.

…there are likely fewer than 2000 doctors…

There is a substantial effort underway to unravel the DNA issues behind NET cancer. In the months ahead there is great potential for a range of breakthroughs based on a better understanding of the genetic causes of the the disease. We can hope that new knowledge will lead to new approaches for treating NET cancer.

Putting NET cancer on the ropes

So we need more doctors, we need more researchers, and we need bundles more money. In the best of all possible worlds we would have all those things–and NET cancer would be on the ropes.

We need more specialists in NET cancer.

We do not live in the best of all possible worlds. We seem headed

for austerity budgets that will slash cancer spending in general–and may kill much of NET cancer spending in specific.

If we are going to kill NET cancer, we will all need to help.