What Being a Savvy Patient Means To Me

I really like being a part of Savvy Cooperative.

I especially like the name – it reminds me that I am a savvy patient.

To me, that means being informed about my condition, and using that knowledge to be a partner in decisions about my health.

I was diagnosed in 2008 with Follicular Lymphoma, an indolent (slow-growing), incurable (but treatable) blood cancer. The disease hits each patient a little differently, and for many of us, it’s essentially a chronic condition, one that might get better with treatment, but will probably come back over time.

Because of that, one of the jobs of a Follicular Lymphoma patient is to pay attention to symptoms. Outside of the regular check-ups (for me, every 4 to 6 months), blood work, physical exams, and sometimes scans, a lot of the responsibility is on us as patients. In fact, research shows that about 80% of recurrences of the disease are discovered by something a patient notices, rather than something that shows up in blood work or on a scan.

A couple of years ago, my then-oncologist suggested I should have a PET scan. “I don’t expect it to show anything,” he said. “But it would be good as a new baseline.”

I asked him, “If you don’t expect the scan to show anything, then why do it?”

“It would be valuable as a baseline,” he repeated.

I know that a PET scan can be valuable in showing if cancer is growing. But the doctor wasn’t giving me a very good reason to get one. And they come at a cost: over time, repeated high doses of radiation (about 250 times the radiation of a chest x-ray) can cause problems like secondary malignancies – a new cancer can develop from the things you do to check on the old cancer. The trick is determining if the scan results are worth the radiation.

We went back and forth a few more times, with me questioning why it was necessary, and the doctor insisting that it probably wouldn’t show any progression of the cancer, but thinking it would be worth it anyway.

In the end, I didn’t get the scan. What I did get was a new oncologist.

Now, I want to be very clear:

I am NOT suggesting that cancer patients avoid PET scans.

And I am NOT suggesting that patients don’t listen to their doctors. (That wouldn’t be, well, savvy.)

I am also NOT suggesting that my doctor did anything wrong in suggesting a scan. Guidelines published by the National Comprehensive Cancer Network suggest that Follicular Lymphoma patients in my situation have no more than one PET scan per year. It had been a year since I had one.

My problem was that the oncologist didn’t seem to even want to have the conversation that I wanted to have. I have had this condition for 10 years, and I have spent a lot of time learning about it – certainly enough to have something to say about my own healthcare. A PET scan for a Follicular Lymphoma patient with no symptoms is a judgement call. And in this case, the doctor thought his judgement was the final word. I disagreed.

(In case you were wondering, my new oncologist didn’t think I needed a scan.)

To me, being a Savvy patient involves two things: 1) being knowledgeable enough about my condition to be able to have an informed conversation with my doctor, and 2) actually having those conversations.

A one-sided conversation is a lecture. That’s not what I want. I want a partnership, where the doctor’s expertise is used to answer the informed questions that I have. I want us to consider my short-term health, my long-term health, and my quality of life.

I want us to make decisions together.

What does being a savvy patient mean to you?

Bob McEachern is a Follicular Lymphoma patient and advocate. He blogs at Lympho Bob and tweets at @Lymphomaniac.

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