Tuesday, September 4, 2012

When medical standards change and they don't tell the patients

Back when I had thyroid cancer in 1981, I was followed by an endocrinologist for more than a decade. Then my endo retired and I switched to a general internal medicine doctor for a primary care doctor. Some where during that time, standards for follow up to thyroid cancer patients changed. Ultrasounds become the standard for following up on potential residual tissue or recurrence and were ordered by endocrinologist. I just went along my merry way with out an endocrinologist not knowing that I should have one.

In 2008 I went to the Thyroid Cancer Survivor's Conference in Boston and found out that I had clearly missed something and should have an endo. Then I started seeing an endo twice a year for blood work and regular ultrasounds and am back on the program.

I had felt somewhere I should have been told that the standards are changed and endocrinologists follow thyroid cancer patients for life. There is no real way patients have for learning about changing standards in care over time. We assume our doctors will tell us.

My previous primary care never was a good communicator and I have switched from her to a new doctor. She really was a communication failure and I rarely saw her, mostly her nurse practitioner, which is why she is no longer my PCP. If this change happened sometime after the early 1990s she should have told me at some point.

I have now learned to be more proactive about asking about changes in treatment. I think my new primary care also does a better job of telling me about changes in standards so I feel more comfortable about it. And I can always hop on to Dr. Google and see what he tells me so I can ask about them.

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