Demonstrating the changing face
Much has changed in NET cancer since Jane’s death nearly seven years ago. The evidence from last weekend’s New England Carcinoid Connection Patient Conference at the Dana-Farber Cancer Institute provided solid evidence of the changing face of NET cancer treatment options. But that conference demonstrated only a fraction of everything that has changed.
…people need to hear the stories…
The NET cancer landscape in 2010 did hold glimmers of hope for the future. But the reality of the moment was pretty bleak. To begin with, research was hobbled by a lack of cash. Support groups were hard to find and patients and caregivers both too often found themselves isolated. Treatment options beyond surgery, Octreotide, Sandostatin, or flying to Europe for PRRT did not exist outside of a handful of trials. And only surgery on very early stages of the disease offered any chance of a cure. The rest slowed tumor growth and eased symptoms in some patients, but not all.
Early obstacles to changing reality
Diagnostic tools were pathetic–and difficult to convince doctors to order. When doctors ordered the tests, they often ignored or explained away the results. The myth of the NET cancer zebra dominated every effort. That belief still hamstrings too many things, even today.
Research was hobbled by a lack of cash.
The fact “carcinoid” meant “cancer-like” caused both doctors and patients to take the disease less seriously than they should have. Even doctors who understood it really was cancer told patients they had, “a good cancer too have”–that it wasn’t serious.
Changing bodies despite ‘good cancer’
Patients suffered, often in silence. They dealt with flushing, insomnia, blood clots, diarrhea–and did so with few complaints. They had the “good cancer.” They died of heart disease, dehydration and starvation–not cancer–not most of the time.
Diagnostic tools were pathetic…
That the cancer caused the valves in the right side of their heart to fail did not change what appeared on the death certificate. That the cancer caused the diarrhea that left them too weak to fight off the flu did not change what appeared on the death certificate. That the cancer caused the painful bloating that kept them from eating…
Changing the horse of a different color
Patients died. Families suffered. The zebra kept dealing out physical and emotional pain and death. Major cancer organizations did little or nothing–acting like the disease didn’t exist. Doctors explained to grieving husbands and wives how a zebra had killed their spouse. The explanation offered no real consolation–only explained why the doctors had missed it until it was too late to do more than fight holding actions against death.
Patients suffered, often in silence.
And the horse disguised as a zebra rode on, spreading death and suffering beneath a cloak of ignorance and not-so-benign neglect. More than seven years after Jane’s diagnosis, I am still angry about it–still angry because too many people don’t see the zebra for the horse that it is.
Changing numbers
In 2010, we diagnosed 10,000 new cases of NET cancer in the US. In 2012, we diagnosed 12,000 new cases. Last year, we diagnosed 21-22,000 new cases. In six years, the number of new cases diagnosed more than doubled. Doctors think most of that increase resulted from better awareness and better diagnostic tools. If they are right, 12,000 potential cases were missed in 2010; 10,000 more in 2012. One can only guess how many deaths resulted–or will result–from those missed diagnoses.
…the horse disguised as a zebra rode on…
In 2010, we knew of 105,000 people in the US who knowingly were living with the disease. By 2016, that number had swelled to 171,000. Doctors say part of that number comes from more and better treatment options. They say part of it is the increase in diagnosed patients. Both seem likely.
Changing awareness
But our diagnostic techniques are still pretty cumbersome. There’s no mammogram or colonoscopy or blood test that reliably will detect NET cancer–no reliable, routine way to screen for it. And awareness continues as a major issue. Even locally, where people have worked diligently to raise awareness, most doctors and nurses I meet have never heard of NET cancer or believe it so rare it isn’t worth testing for.
In 2016, that number had swelled to 171,000.
Barring accidental discovery, the vast majority of NET patients still do not have their disease diagnosed before it reaches the advanced stage. At that point, while we have more treatment options than we did in 2010, we still have no cure. We can sometimes slow the disease down, ease its symptoms for some patients, but we can’t yet stop it.
Changing funding
NET cancer research funding has grown enormously since 2010 when we raised and spent less than $2 million. In 2016, the US government, private foundations, and cancer centers ponied up about $15 million for the fundamental research required to create treatments and cures. Based on the number of trials going on, pharmaceutical companies are likely pumping in an equal amount to test new drugs and treatments.
…our diagnostic techniques are still pretty cumbersome.
The steady increase in NET cancer funding over the last seven years has led to substantial and significant research. In 2017 alone, more than 60 papers will have been published or accepted for publication on NET cancer. New drugs and treatments have been approved or stand on the brink of approval. New ideas for future treatment options seem to emerge every month. And researchers have concrete new ideas for diagnostic techniques not even hinted at in 2010.
Don’t declare victory
But while things are much better and more promising than they were in 2010, we are still a long way from home. The battle against NET cancer is far from won. One-third of that $15 million raised for basic research comes from a $5 million a year grant that ends in 2018.
NET cancer research funding has grown enormously…
That creates a substantial hole in funding someone–or a lot of someones– will have to fill. And even basic research and pharmaceutical funding combined does not amount to pocket change against what we spend in the US on breast cancer, prostate cancer, or lung cancer.
The awareness problem
Awareness, too, remains a problem, both among doctors and the general public. NET cancer afflicts more diagnosed people in the US than ovarian cancer, than brain cancer, than cervical cancer. Everyone has heard of those three cancers. Bring them up with a doctor or a nurse or even an ordinary layperson. It will be rare to hear them say what we hear when we say NET cancer or carcinoid cancer: “What’s that? I’ve never heard of it.” That needs to change.
The battle against NET cancer is far from won.
Go to the American Cancer Society website. Search for those four cancers. You’ll find pages on three of them. The one left out is NET cancer. That needs to change.
Changing the future
The simple truth is we don’t know how many people have NET cancer in the US and don’t know it. We don’t know how many people in Europe have NET cancer and don’t know it. We don’t know how many people have NET cancer and don’t know it. Some doctors are willing to commit to the possibility of another 250,000 undiagnosed cases in the US. But it could be more–perhaps lots more.
That needs to change.
Worldwide NET Cancer Awareness Day is Friday, the 83-month anniversary of Jane’s death. Friday, I’ll again recount the story of Jane’s life with NET cancer. It will hurt me in my soul to relive her last days. But people need to hear the stories of NET cancer patients. They need to hear the stories of their surviving caregivers. We need to help people see this disease in all its ugliness. And we need to ask for their help so that, someday soon, no one has to suffer what Jane did ever again.
(Editor’s note: We’re seeing an increasing number of posts this month on Facebook this month where people are going public with their NET cancer stories. We’ll share as many of those as we can on our Facebook page over the rest of the month. If you’re willing to share your story on walkinwithjane.org as well, we’d be delighted to spread the word that way as well. Just send your NET cancer story to walkingwithjane@gmail and we’ll share it. We will do light editing for mechanics–and we won’t publish anything that violates libel or slander laws–or the standards of good taste.)
