A woman who enjoyed a very special place in the hearts of many in this country and throughout the world, her death was bound to be covered extensively in the media. For those of us who are concerned about these things, much of the coverage was frankly wrong in my opinion when it came to describing the disease Ms. Franklin suffered with for seven years.
You see, she did not have pancreatic cancer. Her tumor may have been located in the pancreas, but the cancer Ms. Franklin had was different: it was what we call a neuroendocrine tumor (NET). It is not the same as the typical pancreatic cancer.
The typical pancreatic cancer is almost always fatal, and unfortunately life is too frequently short following a diagnosis. NETs can be cured, or if extending beyond the pancreas can still be associated with a survival much longer than typical pancreatic cancer. The treatment is different, the outcome is different, the cure rate is different.
What has driven me to share these thoughts with you was an email I received today from an NET advocate, someone who has been in touch with me about this topic in the past. Her point was well taken:
“Mrs. Franklin in her own words in 2011 interview stated ‘I do not have pancreatic cancer’ which was an accurate statement then and now. If ever a case is to be made to define neuroendocrine cancer by its own terms and not under any other cancer’s subgroup…surely today makes that argument even stronger.”
Let me make this even more relevant to me personally:
I received a couple of interview requests yesterday to discuss pancreatic cancer research and treatment. That’s not unusual, especially when someone well known is diagnosed or dies from cancer. Like many of you, I thought Ms. Franklin had pancreatic cancer and that’s what the reporters wanted to talk about. Other time commitments prevented me from taking the requests. After the fact, I am glad I didn’t do those interviews. If I did do the interviews based on the information I had at the time, I would have provided wildly inaccurate information about Ms. Franklin and her illness, just like so many others did.
And what about people with pancreatic NET who are trying to get accurate information about their illness?
If you were someone who had a pancreatic NET and were told to look at information for “pancreatic cancer,” you would come away with a much different sense of diagnosis, treatment, and prognosis than you would have, had you looked at the right information. In my eyes, that is not appropriate.
I am happy to report that our medical editors at the American Cancer Society have given this some thought and agree that our web information needs to address pancreatic NET separately from pancreatic cancer. So, a rewrite of our information on cancer.org about this tumor was already in the planning before the current news cycle.
Maybe it is time for all of us who communicate about cancer to increase awareness of what neuroendocrine tumors are all about. And maybe it’s time to be more accurate in the advice we offer and when we report on the cancer diagnoses and outcomes for people known to many of us.
As my friend said in her email:
“If ever an opportunity existed to dispel ignorance and medical confusion with regard to neuroendocrine cancer…would be the perfect opportunity and time to do it.”
For me, she makes an excellent point. There are a lot of memorials to Ms. Franklin. Maybe helping the public better understand the illness that she had could be one of them.