Yes, ET is cancer. Why is that so important?

Do you ever feel like this when you're trying to come to
terms with your ET diagnosis? Yes, I thought so.

I belong to and participate in some of the private Facebook support groups for ET. When new people come on line, one of the first questions is often this: "What's wrong with me? Is ET cancer or not?"

Often the confusion arises when doctors tell patients that they have a "disorder" or a "pre-cancer" or "cancer but not really cancer," or (weirdly) a "benign cancer." Then they look up their disease on line, and find out that ET is a "rare, chronic blood cancer."

And they freak out.

It's beyond me why doctors don't realize that, when they give patients vague info, those patients are going to go online. And that's not going to make the doctor's life easier. But that's a doctor problem.

When new people ask the "is it cancer?" question, support group members often jump in and very vehemently affirm that ET IS cancer.  I wanted to learn more about why patients feel this is so important.

I asked some of you who follow our Facebook page (link at left) to explain why it's important to ET patients to be seen as cancer patients, and here are some really interesting insights along with my own two cents:

It's not a "woman problem." "Syndromes" and "disorders" are often seen as "women's ailments," which, in turn, are euphemisms for "hypochondria." Talk to any woman, especially a middle-aged woman, who has fibromyalgia or chronic fatigue syndrome, and you'll get an earful about doctors and family member who think it's all in their heads or just a by-product of menopause.  Most ET patients are middle-aged women, and most have had symptoms blown off as "The Change," perhaps for years. Acknowledging that ET is a cancer with measurable and visible markers forces clinicians and others to take ET seriously as a serious disease.

I talk to nursing students a couple times a year. "Yes," I tell them, "I look perfectly healthy. That's because you can't see the megakaryocytes with their weird little nuclei in my bone marrow. You also didn't see what it took for me to get up this early and get prepared to come here. And you won't see me crash at 2:30 p.m."

Taking patients seriously means that doctors might be more alert to signs of progression and, perhaps, empathetic to their symptom burden. But this has been slow in coming.

Some patients actually prefer not to think of their ET as "cancer," at least for awhile. Waking up every morning and thinking, "I have cancer," is understandably difficult. It may take patients a few years dealing with ET to realize that it is manageable and that disease progression tends to unfold in slow-motion.

And most of you tend to use the word "cancer" with certain people. To my elderly and ailing mother, ET is "just that blood disorder that Dad had." To my husband it's a "serious cancer, and I might collapse if you don't do the dishes tonight." Hee.

It affects availability of benefits. Having a cancer diagnosis may make it easier for a patient to get public medical assistance or disability benefits. And the symptom burden for ET patients can be debilitating. The Landmark Study done last year showed that 30 percent of ET patients have reduced their job hours due to ET symptoms. Eleven percent have retired from their jobs altogether.  (And, despite the important info, the Landmark study collected, it still refers to ET as a "rare condition," not a cancer.)

Calling ET a "cancer" does make it more difficult, more expensive, or just plain impossible to get life insurance. This was driven home to me last month when my insurer offered an uptick in coverage for a small fee hike. There were two medical questions I had to answer, and one was, "Have you, in the last 12 months, been diagnosed or treated for cancer?" So I decided to stick with my current coverage.  Other ET patients report the same experiences.

Worryingly, someone whose doctor tells them that ET is NOT a cancer could tick the "no" box to this question, and that could jeopardize coverage if the insurance company defines ET as a cancer. The confusion doctors spread by weaseling about the "C-word" could create headaches for patients here.

In addition, if insurance companies in the U.S. are allowed to exclude or charge patients based on pre-existing conditions, as they were prior to the Affordable Care Act, health insurance will be beyond the reach of many.

Cancer is not contagious. Disorders or syndromes might be contagious, or the product of infection diseases. They're hard to explain, and people sometimes wonder if they're catching. Explaining that ET is cancer usually helps others understand that, no, they can't catch what we have. We should NOT, however, be giving blood or donating organs, because those are affected by the disease.

Cancer gets more attention from Big Pharma. Calling something "cancer" usually gets the attention of pharmaceutical researchers. That means more research funding and the chances for better treatments to control or eradicate the disease. However, ET patients have been slow to be approved for new medications. While PV and MF patients are approved by the FDA for Jakafi (ruxolitinib), ET patients are still waiting. If they take Jakafi, it is prescribed off-label, and this means that insurance companies often won't pay for it. (Actually, hydroxyurea, which most of us eventually end up taking, is also still off-label for ET patients. It's usually not a problem, because it's a cheap drug that can be prescribed in generic form.)

So what? Patients need a clear classification of their ET, not just because they want health care professionals to take them seriously, but because it makes a clear difference in many aspects of their lives--whether they can continue to work full-time, whether they can get life insurance, whether new drugs will be available, and whether insurance carriers will pay for new drugs.

While we celebrate the strides made in the last five years in this disease--new drugs, better studies about the effectiveness of drugs, genetic discoveries--we still have a way to go to get straight answers about our disease. As patients, we can keep demanding good care and understanding from our hematologists and trying to educate others about ET.

Be well!

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