Monday, June 26, 2006

Oh. Whoops.

I belong to a myeloma e-mail list, and somebody posted a link to this article about a woman who was diagnosed with multiple myeloma and treated for it for over six years ... and now it turns out she never had it in the first place.

Whoopsie.

Turns out her doctor didn't do a lot of important tests before diagnosing her, including a bone-marrow biopsy, which is one of the most important tests for myeloma. Myeloma's not diagnosed from any one, single test; doctors need to look at results from several different tests before they can make a final conclusion. A jury awarded the woman a million dollars. I'm sure she went through a lot of unpleasantness, and, man, that doctor doesn't sound too bright, but I'm wondering ... why didn't the patient question anything?

Why didn't she learn the basics about myeloma and find out what tests she needed? Why didn't she get copies of her results, check them out, and then ask what the results meant? Why didn't she get a second opinion before starting treatment?

So, here's my public-service announcement for the day: If you've been diagnosed with myeloma or any other awful health thing, you need to do all of the above-mentioned stuff. I'm not saying that you shouldn't trust your doctor, but at least get on the Internet for 10 minutes and make sure he/she ran the right tests, for goodness sakes. My doctor at the Mayo Clinic told me that she once had a patient who was told by his regular doctor that he had four months to live. She checked him out and ... there was nothing wrong with him. So you never know.

OK. I'm done. I've only received one silly children's song so far. Come on! You know you want to share!

2 comments:

John Wagner said...

I think there are many people like this lady -- people who put their complete trust in the doctor. My dad was like that. When he was personally battling my type of leukemia, he never asked his doctor anything. I lived 2,000 miles away and couldn't get much information because dad didn't know. When I would ask what a certain treatment was expected to do or what a medication was prescribed for, he didn't know other than that is what the doctor told him to take. The majority of his battle took place before I had a computer or ever got on the internet.

Even today my wife gets upset with me when I debate, discuss or refuse certain treatments and prefer others because of my research. Several times she has told me I need to listen to the doctor because "he is the one with all the diplomas on the wall." Umm, a general hematologist/oncologist can't be expected to keep up with the very latest discovery for every cancer out there as it happens. I have been able to educate him on a lot of cutting edge stuff, very soon after it is published on line and before it makes it into hard copy.

On www.cllforum.com, for patients with chronic lymphocytic leukemia (CLL), several members are facing treatment decisions and are getting differing advice from different doctors. One patient traveled to and consulted with four different top CLL experts in California, Houston, NYC, and Columbus, Ohio – all well-known names in the field. That patient received four very different recommendations for treatment. Now it is up to the patient to decide which one to follow. All very frustrating.

All that to say your point is very accurate and should be heeded by everyone in a serious medical situation. It is, after all, our lives we are dealing with and nobody is more invested than the patient.

DebG said...

Hello, I've been reading through your blog as I've just been diagnosed with Smoldering Myeloma. I have 2 kids under 5 and am v scared. I have been told I have a 1 in 3 chance of developing myeloma but not much more. I wondered if you had any guidance on good questions to ask...i'm very confused!
It seems in the UK SMM isn't considered serious enough to get support. I can't find anything without reading all about Myeloma and I'm trying not to do that. But unless you have cancer there isn't much around.
All I know so far is that I have raised protein, raised light chain readings and abnormalities in my bone marrow.