Patients supporting patients

Spend a few days browsing the online carcinoid/NETs patient support groups on Facebook and you will come away with two impressions. The first is that there is no more caring group of human beings anywhere. There are many such groups for other forms of cancer and for those of us buried in grief that are as supportive and familial as the various ‘noid groups I spent time with over the last week. But none exceed them.

…discoveries will mean nothing if no one hears about them…

If you have carcinoid/NETs you need to become a member of one or more of these groups. I wish they had existed–or that we had been able to find them–when Jane was diagnosed. It might have made our lives a bit easier to have someone to share our agony with who really knew and understood what we were feeling. Don’t misunderstand me: We had great doctors and nurses and wonderful friends. But a carcinoid diagnosis is like the experience of grief–a thing only those who are going through it fully understand.

Support from doctors uneven

The other thing I came away with, though, was less positive. Because of the amount of time I spend with researchers and doctors and patients here in New England–where we have first class facilities and some of the most knowledgeable people in the world about this disease–I sometimes lose track of how desperate and frustrating this disease is for the vast majority of patients out there.

…only those who are going through it fully understand.

There are pockets where you can get the necessary expertise you need, but outside those pockets is a vast wasteland inhabited by oncologists who are not up on the current thinking–at best. At worst, they have so little idea about the disease that they don’t even perceive it as a cancer.

Horror stories from the front lines

On one site I visited to try to generate the list of patients and deceased for this year’s Walking with Jane Marathon Walk T-shirt, a recently diagnosed woman was stunned to learn from that post that you can die from carcinoid/NETs. Her oncologist had apparently told her it was a “manageable disease” like diabetes–and not even potentially fatal.

…outside those pockets is a vast wasteland…

Another was told that despite high readings on the Chromagranin A and 5-HIAA urine tests, that if a set of scans came back negative, they could “lay the carcinoid thing to rest.” Another was told to ignore anything learned on the Internet, even things posted by Dr. Eugene Woltering, one of the leaders in the field.

Patients provided better information than doctors

People had routinely been told by oncologists that carcinoid was not really dangerous, that it grew very slowly, that it was unlikely to spread, that there was no need for follow-up exams beyond a few years after successful surgery, that the disease could be managed, that they would live fully normal lives, that the tumors were benign.

Her oncologist…told her it was a ‘manageable disease’

I’m a layman–an English major, no less. I have no special training in medicine beyond having read the various studies done on carcinoid/NETs in recent years. I am certainly not an oncologist of any kind. The only truth in that laundry list of claims above is that most carcinoid/NETs tumors grow relatively slowly–and that slow growth is not a benefit because it makes it harder to kill.

None of these patients are stupid. They listen, as anyone would, to what a person they perceive as an expert in the field tells them. The problem lies with the doctors, not with the patients.

We need to do more to educate doctors

I would think an oncologist, confronted with carcinoid/NETs for the first time, would seek out the latest knowledge on the disease and base her/his actions on that knowledge. Apparently, that does not happen as often as it should.

None of these patients are stupid.

There is great frustration and anger in the carcinoid/NETs patient community. Yet there is deep and abiding patience and love there as well. Many of these patients deserve better than they are getting. My time with them reminded me just how important the education portion of this mission is. Yes, we need to continue to support the research side, but our discoveries will mean nothing if no one hears about them–or acts on them.

Editor’s Note: All these support groups are private groups on Facebook. They are open only to patients and their immediate families.