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| Things you hear about MPN "specialists" and other ET-related issues on social media (including this blog) are usually things you need to learn more about and discuss with your doctor. |
If you follow online support groups for people with ET or MPNs generally, you'll eventually encounter people who urge everyone to see an MPN specialist. Often, when people complain about their doctors, the first question others will ask is, "Is he/she an MPN specialist?"
I've been following these conversations for over a year, and I think we need to understand that there is no such thing as an MPN "specialist," and that things we hear in support groups (or on this blog that you're reading right now) are things we need to learn more about.
Let's look first at MPN specialists:
I'm not sure how specialties are designated in other parts of the world, but in the U.S. a doctor can receive certification from the American Board of Medical Specialties. When people say their doctors are "board certified," this is what they mean.
Strictly speaking, the closest thing to a certified specialist in the ET family of diseases is a certification in internal medicine with a subspecialty in hematology. Not all hematologists see a lot of ET patients, of course.
Your chances of finding a hematologist who is up on MPN treatment may be increased if your doctor is a member of the American Hematological Society (ASH). ASH has a handy search engine to help you find a hematologist with an interest in MPNs near you. (I already have a hematologist, and, yes, Dr. Blood turned up on my search of hemo's with an interest in MPNs. I also found three other doctors within a 50-mile radius of where I live. I have consulted with one of them.)
The MPN Research Foundation also keeps an ongoing list of hematologists who have been recommended by MPN patients world wide. Interestingly, none of the four hematologists who popped up on my ASH search are listed on the MPN Research Foundation list.
The benefit of using these search tools is that it they can help you find doctors who are a) interested in MPNs or b) liked by other patients with an MPN. And, yippee if c) a doctor shows up on both lists!
A third way of finding a hematologist is to read medical journals and look for at the names of doctors who contributed to research about MPNs.
Once you find an MPN "specialist" (loosely defined as a hematologist who has an interest in or does research in this area), you'll encounter differences of opinions among those doctors. Again, in following conversations on support groups, you'll hear things like this:
Dr. A would never put anyone on HU except as a last resort because it causes leukemia.
Dr. B says that HU has not been linked to secondary cancers.
Dr. C says that the only drug that will lead to remission is Pegasys.
Dr. D says that Pegasys should not be used in patients with a history of depression.
Dr. E says that Pegasys doses are so low that everyone should be able to tolerate Pegasys.
Dr. F says that Pegasys should not be used except in patients who want to have children.
Dr. G says that you can go off your chemo if you get pregnant and just take a blood thinner.
Dr. H says that Jakafi should only be used for patients who have progressed to myelofibrosis.
Dr. I put me on HU as soon as my platelets hit 500 (600, 700, 800, 900, a million, 1.5 million).
And the list goes on.
It is often helpful to know what other people's doctors are saying so that you can ask your own doctor questions. But remember that the right treatment for you depends on a lot of things: Age, genetic mutation, onset of illness, history of clots and bleeding, symptoms, and how well your ET responds to a particular medication.
Some things also depend on your doctor's own temperament and judgment. Is he or she conservative about treatment and trying the latest drugs? Or is he or she a researcher who helped develop a new drug and believes that you would benefit from trying something new?
If you participate in support groups (and they are a mixed bag), it is important to remember three things:
1. What other patients say their doctors told them may not be accurate. Or what applies to one patient may not apply to you. A woman diagnosed with ET in her 20s who wants to have a family is going to be treated very different from a woman like me, who is 64.
2. Other patients are often very afraid of their ET or freaked out about it, and they can become emphatic or even combative about the correctness of their own treatment and the "wrongness" of yours. And some people are just control freaks who like to be right all the time. I have left support groups when they become dominated by these folks.
3. Some patients push certain vitamins and supplements, or they claim they are controlling platelets with a "natural treatment." It is true that some patients can benefit from supplements (your doctor can help you there). But some of those pushing "natural treatments" are people who are posing as patients and trying to sell you stuff.
As we've said here before, ET complicates everything. Here's hoping you can find a good doctor, and you'll find a support group that offers more support than arguing.
Be well!
I'm newly diagnosed and have found some of these challenges to be disheartening. If you have the insurance, resources, ability to get to a doctor that *you* deem to be an expert does not effect my situation. If my insurance won't pay for me to go out of state ? I work for the government -my income doesn't allow me to seek out of state expensive care. Saying "but it's your life" is absurd. If I spend all my money to get to MD Anderson or Mayo clinic what good does that do me if I can't afford my medications?
ReplyDeleteI'm a part of several on line support groups. The MPN groups are the only one where people are immediatly challenged that their diagnosis may not be legitimate. It's frustrating.
Welcome, Margaret.
DeleteI understand completely. I didn't have insurance for years. Am grateful to have it now (and one year away from Medicare), but the insurance I can afford does not pay for out of network care. So Mayo and Anderson are beyond my grasp.
I have found conferences helpful. There have been a couple near me. MPN Advocacy & Education International (link at left) tries to hit cities across the regiond in the U.S. They also have many presentations recorded on YouTube.
But if you learn a lot of interesting things, the challenge is to tell your doc you went to a conference and try to get him or her to listen.
Support groups are a mixed bag. A few folks are unclear on the concept of "support."
I sometimes think frustration is one of the worst side effects of the disease!
Oh my, this is so true. I'm on the verge of dropping out of my support group. The information I've learned has been helpful, but it's almost not worth it, what with all of the pressure to jump on the (drug that shall not be named) bandwagon.
ReplyDeleteThank you, Jean, for introducing some sanity to the discussion.
Yes, Joanna, it's sure sad when your fellow cancer patients turn out to be the least caring and understanding. A friend who recently died of breast cancer was bombarded with nutty advice from a few people (who did not have cancer). I like to think most people are more encouraging, though. But the windings are out there, and a good moderator sometimes helps a group.
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