NET cancer in the mainstream press
I read a lot of stories about individuals who have been diagnosed with NET cancer in the mainstream press now. The increase in coverage of those stories is impressive over the last two years. And every one of those stories puts NET cancer on the map in another community–raising awareness in
a highly personal, memorable and moving way.
I want them to have the life that Jane and I imagined…
Because a NET cancer diagnosis is seen as something new and interesting by local media, we get more press coverage than we once did. And I have to admit that getting any press coverage is a good thing.
The NET cancer litany
But what is depressing about that coverage is the dreadful sameness of the stories they tell. I’m not talking about their explanations of how rare the disease is or how difficult diagnosis is. I’m talking about the stories the patients themselves tell
about their encounter with NET cancer and carcinoid syndrome.
Every story makes me cry…
They all talk about the years of stomach pain, gas and diarrhea. They talk about the flushing and the insomnia. They talk about how they were diagnosed with IBS or a chronic lung problem or anxiety–the standard litany of horses that the zebra of NET cancer comes disguised as.
Their NET cancer hope
Almost without exception, they explain how they were not diagnosed until the disease was at an advanced stage and how narrow their treatment options are. They are all, as Jane and I were, optimistic about their chances of beating the disease. They talk about the advances that have been made in treatment and the trials they have been enrolled in the doctors hope will have a good result.
I see Jane’s story told again and again…
I see Jane’s story told again and again and again. I hear in the words of the spouses my story told again and again and again.
The reality of NET cancer
Every story makes me cry because I recognize it as our own story so much of the time. I weep for them and for Jane and for myself–and for all the others who share this same hideous story. I know too well the story they are not telling–that many of them do not know at the time they are being interviewed but will only learn in the weeks, months and–I hope–years ahead.
…the dreadful sameness of the stories they tell.
Once NET cancer has reached an advanced stage we cannot cure it. We can slow its progression–sometimes–but eventually it will cause death–either from carcinoid syndrome or organ failure.
NET cancer dreams
There is hope on the horizon. There are new drugs in the pipeline–albeit largely designed for other cancers. We have two viral treatments that show some promise in early trials. Liver ablation and embolization give us tools to starve metastases in the liver. We will soon have in hand DNA results that will help us figure out who is at risk and may give us a better handle on how to attack the disease.
…getting any press coverage is a good thing.
But I want those NET cancer patients to have more than a sliver of hope–I want them to have the real possibility of a cure. I want them to have the life that Jane and I imagined–but never got to have.
