Landscape has not changed enough

Changing the landscape of NET cancer awareness among the general public is one reason I do craft fairs. Reaching out to primary care doctors has proven a more difficult task. Wow need to reach them.

Changing the landscape of NET cancer awareness among the general public is one reason I do craft fairs. Reaching out to primary care doctors has proven a more difficult task. We need to reach them.

Brighter landscape in many areas

The NET cancer landscape has changed dramatically since 2010, as I wrote earlier this month. Patients who came to this disease before that year no doubt have seen even larger changes. But newer patients may well look back seven years from now and see today as just as bleak as we saw the date of our own or our loved ones diagnosis.

That still needs to change…

To a large extent, even the name of the disease has undergone significant change in recent years. When Jane was diagnosed, everyone seemed to talk about it as carcinoid cancer. Carcinoid meant “cancer-like” and many doctors took that literally. They called it a good cancer too have. They did not mean that cruelly. They’d never really seen it. They didn’t understand it.

PCP landscape still dark

Too many primary care doctors still see it that way. Too few doctors remember it from medical school. Many did not hear of it even in passing then. And even those who have heard of it too often think of it as a form of cancer so rare there is no point to testing for it. Worse, the idea of it as a “good” form of cancer to have persists.

They did not mean that cruelly.

People say basal cell skin cancer is a good cancer to get. I used to think so, too. My dermatologist freezes some off my face every six months. A decade ago, I had Mohs Surgery to remove a more troublesome spot. I went back to work the next day. Basal cell skin cancer isn’t generally life-threatening. It’s easy to cure. But in early August I had another round of Mohs Surgery. It’s mid-November and I’m still recovering.

A patient’s daily landscape

There is no “good” form of cancer. Not all cancers end in death, but every cancer changes life as we know it. My skin cancer forced me to face a variety of issues–gave me a small taste of a future I don’t like. For weeks, everything I did was a struggle. The fog of mourning deepened in enforced inactivity. I’ll be months regaining the endurance and strength I’ve lost.

Too many primary care doctors still see it that way.

And this is a picnic compared to what Jane went through–to what every NET cancer patient goes through. Diarrhea, insomnia, flushing, sudden mood shifts form the daily routine of NET cancer patients. The constant diarrhea alone strips patients of protein, vitamins, minerals–every nutrient the body needs–and leaves them in an endless state of at least marginal–and often serious–dehydration. It annihilates quality of life on its journey to destroying life.

Not that rare in the total landscape

Nor is this the rare disease many doctors think. We diagnose 5-7 times more NET cancer patients a year than we do MS or Cystic Fibrosis, two of the better-known “rare” diseases. More patients diagnosed with NET cancer live in the US than those diagnosed with all forms of malignant brain cancer combined. Among all the forms of gastrointestinal cancer, NET cancer patients outnumber every other individual form but colon cancer.

There is no ‘good’ form of cancer.

Brain cancer, pancreatic cancer and those other gastrointestinal cancer kill more quickly than the average NET cancer. The comparative longevity of NET cancer patients builds up the number of those living with NET cancer beyond those of the cancers that kill more quickly. But mere longevity means nothing without good quality of life. When even a trip to grocery store requires knowing exactly where the bathroom in every store is, there is nothing good to be said for the quality of that life.

Changing the landscape

We have significantly more research funding than we did seven years ago. The support system for patients has changed with the creation of more than 20 online support groups. Those groups cover everything from what to eat to surgery, from emotional to informational support. There are even groups that support specific types of NET cancer. We have new drugs, new treatments, new diagnostic tools, and more new ideas in the pipeline than at any point in the history of the disease.

…mere longevity means nothing…

But the general medical awareness and understanding  piece of the NET cancer landscape has not changed enough over the last seven years. No patient should ever hear any variation of the words, “You have a good form of cancer.” They should never hear, “You don’t really have cancer.” And they should never hear, “I’ve never heard of this type of cancer before.” That still needs to change if we are going to change the NET cancer reality.

Posted by walking with jane on November 14, 2017

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