Crossing the NET cancer bridges
Returning to Dana-Farber and Brigham & Women’s in Boston, as I did on Wednesday, is always hard. Over the four months from Jane’s diagnosis to her death from NET cancer I came to know that entire area in ways I never knew it when I lived and worked in the area in the early 1970s. An area of the city I once viewed as a very happy time in my life will be forever different because of what happened there in 2010.
…dermatologists are often the first ones to pick up on NET cancers.
I arrived early for my meeting with Jen Chan, Jane’s oncologist, and Matt Kulke, who heads the Program in Neuroendocrine Cancer at DFCI. It gave me a little time to briefly visit people in the Family Support Center in the Shapiro Building before walking the bridges between the Shapiro Building and the Yawkey Center. As I crossed the final bridges I encountered two couples about the same age as Jane and I when we made our first visit to Dana-Farber in 2010. They wore the same deadly heroic faces we did as we headed for the scans that would change our lives.
Perhaps there was NET cancer there. Perhaps it was some other, less hopeless, form of cancer. Perhaps it was one even more hopeless. Every cancer may be different, but on the day of diagnosis, every patient is the same.
NET cancer and the dermatologist
The day before I had visited my dermatologist for my semi-annual skin inspection. He froze another pre-cancerous lesion from my face–this one on the bridge of my nose. When he was younger, he was a marathoner. Now he does distance biking for a foundation that works with children. We talk a bit when I visit about the work we both are doing.
We can’t afford the average of three incorrect diagnoses…
He told me this time that dermatologists are often the first ones to pick up on NET cancers. Patients with the characteristic flushing and roseate faces often seek out a dermatologist, thinking the problem has to do with their skin–and not some out-of-control hormone. He hears flushing and diarrhea and very quickly thinks of NET cancer.
But most often a woman with flushing and hot flashes does not get referred to a dermatologist. She may see a gynecologist, but chances are both her primary care doctor and her gynecologist will chalk it up to early menopause.
Need for NET cancer training
I keep coming back to the need to train general practice physicians to know the signs of NET cancer–to not be satisfied with an irritable bowel diagnosis until they have uncovered the underlying cause of the syndrome. IBS is not always NET cancer–sometimes it is Crohn’s, sometimes it’s an ulcer, sometimes it’s celiac disease or some kind of food allergy–but sometimes it really is NET cancer. How often that is the case, we simply do not know–just as we do not know how often right side heart valve failure is caused by NET cancer as opposed to something else.
They wore the same deadly heroic faces…
We talked about figuring out how to do in-service training for doctors on NET cancer on Wednesday, as well. With NET cancer the most important thing is finding it early–when a fairly simple, straight-forward surgery can effect a near-100 percent cure rate. Most cases are diagnosed too late for that.
We can’t afford the average of three incorrect diagnoses we currently have on NET cancer. We can only change that by doing a better job teaching doctors about NET cancer before they see their first case.
