We really have no idea

Sometime in the last week or so we likely surpassed in views of this website the number of people diagnosed with NET cancer in the last 12 months. If we have not, then we will do so shortly.

But that number is likely misleading. The truth is we have no idea how many cases of NET there are out there. Even the experts resist putting a number on it. We can establish a minimum number based on diagnoses made. But NET cancer is so hard to detect, so easy to confuse with something else, that we have no real idea the size of the thing we are looking at.

Just because a thing is rarely diagnosed does not make it rare.

In June, I was at a patient conference on NET cancer. One of the speakers made a reference to a speech he had heard given by one of the big names in NET cancer research. He was talking about how rare NET cancer is. Rare diseases are called zebras in the medical profession. The researcher had called NET cancer a pink zebra because he considered it among the rarest of the rare.

And people laughed.

NET cancer and the zebra label

Patients with NET cancer and their caregivers wear that zebra label with a sense of pride. It helps us live with the slender resources dedicated to the disease and enjoins us to be patient. Breast cancer patients have it worse than we do, we console ourselves–and there are so many more of them than there are of us.

…a pink zebra because he considered it among the rarest of the rare.

NET cancer patients are told the disease is “indolent”–that, unlike other cancers, it is slow to kill its human hosts. We believe we have years before death comes for us or our loved ones–and surely in that time “they” will find a cure–or at least some way to prolong our lives.

And yes, my wife likely lived for 30 years with the disease before it overwhelmed her. Of course the fact she never drank and exercised like a fiend played a role in that. Had she been less a straight-arrow than she was…

Quality of life issues

The fact is, however, the quality of her life was often very poor throughout those 30 years. She had frequent diarrhea, gas that was so painful I could not touch her belly, endless, frequent insomnia that often left her in front of her classes on an hour’s sleep or less. She could not really eat after 6 p.m. without paying an awful price–and anything after 4 p.m. was dicey.

And the mental price was equally cruel: she was told she had irritable bowel syndrome–that it was probably caused by nervousness, anxiety, that it was all in her head–and that if she took this drug or saw that psychotherapist there was a chance it would all go away. What she heard was: “They think I’m nuts.”

…surely in that time “they” will find a cure…

The longer it went on the more short-tempered and frustrated she became. Her immune system began to decay. Then her feet and legs blew up like balloons. Then her arms. On our way back from her last appointment at Dana-Farber she was leaking fluids from the injection site all the way home.

For three of the last four months of her life she had to give herself three injections in the belly every day. I have talked to NET cancer patients who have done that for ten years or more.

Stop being patient patients

We suffer in silence. We are just a zebra–and a rare zebra.

To which I say, in the words of MASH Colonel Sherman Potter, “HORSE HOCKEY!” We need to make some noise.

Today, I read a paper about NET cancer in children. Children are not supposed to have NET cancer–and certainly not NET cancer that has spread. But there it was, a paper reviewing 237 cases of childhood and adolescent NET cancer patients–some of them with metastases–whose disease was discovered entirely accidentally in the course of other surgery. What wonderful lives those kids have to look forward to.

They think I’m nuts.

Add in the papers I have already talked about that tie NETs to aggressive prostate cancers, to aggressive forms of breast cancer and lung cancer, and the researcher I talked to who quietly explained to me that many cancers are actually colonies of different types of cancer cells–and that three million potential undiagnosed cases out there hypothesized by that 2009 autopsy study suddenly looks far more realistic than I want to think about.

Catch phrases

“If you don’t suspect it, you can’t detect it” has become one of the catch phrases of NET cancer research.

Let me add another thought to that equation: “Just because a thing is rarely diagnosed does not make it rare.”

…she was leaking fluids from the injection site all the way home.

Radioactivity was all around us for years before we discovered how to detect it. That did not make it rare, only invisible to the means we had to find it.

Neuroendocrine cancer, like many other supposed zebras, may yet prove not rare it all. It may, in fact, prove all too common.

Marathon Walk Update

I have squeaked into the top 30 based on my numbers today that official put me at $6014.80. My unofficial numbers place me at $6614.80, which would still put me just outside the top 25 at this point.

Second on our team is Elizabeth MacNeil at $2508.80, which earns her two star status. Jenaleigh Landers holds onto third with $550.

My current official goal is just under $900 away. We are about halfway to our team goal of $25,000. The walk is two weeks from Sunday.

Needless to say, we are still seeking donations and team members.

Help us make some noise about NET cancer.