I got an email yesterday from someone who said they had stumbled onto walkingwithjane.org while doing research on something else. They wanted to report a broken link. That happens sometimes. I can’t police every link every day and rely on the kindness of strangers to let me know when something doesn’t work.
I look forward to a day when we will all look back at cancer as a thing from the past that once haunted our dreams…
But the writer’s reply asked that I consider including links to information about other forms of cancer–specifically mesothelioma and childhood cancers. Normally, I would not reply to such a request at all. I get many such requests–often from groups that, when I investigate them, I discover are less than stellar charities.
Carcinoid anger
I’ve been working for a couple of weeks editing material for the Social Mediathon Walking with Jane is doing Sunday on various social media platforms as part of NET Cancer Awareness Day and maybe that is why the request rankled me enough to reply to this particular request.
…if we do not catch this disease early–and we almost never do–there is no cure.
What follows is the text of my reply. I post it here because the writing of it forced me to think about some things I do here and the reasons I do them. Further, it gave me a chance to explore some of the issues about NETs and carcinoid that continue to frustrate me even nearly 35 months after Jane’s death.
Herewith, my reply–amended with subheads:
Carcinoid focus
Our entire focus is on NETs and carcinoid cancer–which are essentially the same thing–because so few people know the disease exists. Yet 12,000 people will be diagnosed with the disease this year–and 120,000 Americans are “living” with it. Because we have no reliable means of testing for it, many suspect the numbers could be far higher. One scientific paper on over 15,000 autopsies found NET cancer in nearly one percent of the bodies. Translated to the American population, that could mean as many as three million people are living with the disease and do not know it.
They travel hundreds–sometimes thousands–of miles to find a doctor...
Walking with Jane is a one-person shop. That person–me–is unpaid. I retired from teaching seven months after my wife died to work on raising awareness and to help researchers find the resources they need to find answers for others with the disease. Last year, barely five million dollars was spent on awareness and research combined in this area–hardly enough to fund a couple of Phase I trials.
The carcinoid difference
While I understand the needs of the two groups you describe, there are many organizations and people working on those issues. In the US, there are three charitable organizations–including Walking with Jane–working on NETs and carcinoid nationally. They have a combined full-time staff of 7-10. We all rely on a small cadre of volunteers–many of them personal friends of one or another of that group. There are likely fewer than 100 researchers working on research for this disease at all–and many of them are only able to work on it part-time at best.
We have no celebrity spokespeople talking up this disease…
I see ads about mesothelioma on TV and the internet with great frequency. You have to be living under a rock not to have heard about children with cancer. Honestly, before yesterday, how many ads have you seen on NETs and carcinoid? I am intimately involved with this cancer–and I have yet to see one. How many patients with this disease–how many of their caregivers–have you seen on television talking about it? We have no celebrity spokespeople talking up this disease–though I can name two who died of it who were–and are–household names.
I know I sound petty
I know I sound petty in saying we cannot afford to distract people from the cancer we are working on here with links to sites on other forms of cancer. Unfortunately, for too many NETs and carcinoid patients, there are so few outlets of reliable information–so few places they can turn in their hour of need–that I cannot bring myself to dilute, even with a link or two, the access to pure information on their disease. I don’t want to risk them getting side-tracked to some organization that cannot supply them with the information they need. I know from hard experience how difficult it was to find detailed information on carcinoid cancer when my wife was diagnosed. It was pure luck that we ended up with one of the real experts on the disease as her doctor.
Our entire focus is on NETs and carcinoid cancer
Most people do not have that kind of good fortune. They travel hundreds–sometimes thousands–of miles to find a doctor who has even heard of what they have. We know so little about the disease that virtually everything is experimental or off-label or simply unavailable locally.
The carcinoid truth
The horrible truth none of us wants to talk about is if we do not catch this disease early–and we almost never do–there is no cure. We have treatments that can buy patients time, that can alleviate the symptoms–but we do not yet know enough about how the disease works to believe a cure is anywhere close to becoming a reality. At Stage I, we have the possibility of a surgical cure. For everyone else we have only a long road that ends in death–a death I have seen up-close and personal. It is not an easy death.
I…rely on the kindness of strangers…
So, no, Walking with Jane will not be posting links to websites for other specific forms of cancer. The American Cancer Society link on our contribute page is the sole exception to a more general policy–and it exists only because we have a Relay for Life team which gives us a large venue to raise awareness about NETs and carcinoid that needs to be supported–and the local Relay folks were enormously supportive of my wife and me during our times of trial.
I wish you well in your future endeavors. I look forward to a day when we will all look back at cancer as a thing from the past that once haunted our dreams–much like the polio of my youth.
Pax et lux,
Harry
I speak with people about NETs and carcinoid cancer whenever I can. Sunday, I’ll be online–both here and on other social media platforms –to help people learn about the disease that killed my wife Jane.
