Friday, December 7, 2012

News flash: confusion among cancer patients

That's not really news. Nor is it the real title. This is the real one:

"Some 20 percent of women overwhelmed by cancer treatment options: study"

I doubt that number. I think its much higher. Like 100%.

And not just breast cancer patients but all cancer patients.

This article claims that 20% of breast cancer patients are overwhelmed by their options and mostly blame it on lack of education. I have a college degree and it was my second cancer and I was overwhelmed. My husband has a Master's degree and was overwhelmed by his options.

"And people who are overwhelmed tend to regret the choices they made." Hmmm... Maybe they felt they were rushed into a decision or couldn't understand the options and finally just did whatever their doctor made sound the easiest.

"The findings, which appeared in the Journal of General Internal Medicine, don't mean that women should not be fully informed about their treatment options, researchers said, but rather that doctors may need to find new strategies to communicate with patients, especially the less educated."

Skip the part about the less educated. I think the availability of information on the internet and other sources combined with their doctor's advice is a good combination. And its not the level or quality of  available information that's the problem. Its the lack of the doctor's support in making the choices.

No we don't want our doctors making our choices but we also need them to decipher the information - they went to medical school and here is an opportunity to use their knowledge to help the patient instead of just dumping it all on them.

Why don't they say things like:

"I recommend chemotherapy and the standard protocol is XYZ. This is the most common protocol for women with a similar diagnosis to you. The latest research supports this protocol. Most women do fairly well with it but these are the most significant short and long term side effects. Here is a little handout you can take home and read it. This is a systemic treatment which should kill off any cancer cells in your body.

Before surgery we recommend a lumpectomy instead of mastectomy because we think we can get clean margins (which means enough space around the tumor so we think we got it all.)

After chemo, we recommend radiation for seven weeks or so. This is a local treatment which will help kill off any cancerous cells in  your tumor's neighborhood. We recommend this protocol instead of mammosite because...

Finally, if you want to get more information on treatment options, I recommend these two or three websites."

What I want is a nice simple conversation with a doctor who lays out the information in an understandable fashion and welcomes a discussion on options. And who will explain the ups and downs of different options.

I don't need a medical lecture which feels like I wandered into medical school. I don't need someone to read a textbook to me. I don't need fear mongering to make me feel like I'm going to die. I can do that to myself 24/7.

I don't think this issue is limited to cancer patients. I think its fairly common. Doctor's should be required to share their secret decoder rings with patients.

1 comment:

Linda said...

This is great advice. I actually had doctors who did this for me. I didn't realize how blessed I was until now. I have six more radiation treatments remaining after six rounds of chemo.Absolutely love my doctors (almost as much as I hate cancer.)

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