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For awhile I've been meaning to post a thought I have about second opinions and Claudia's unfortunate experience brought it back to mind.
Let me start by saying that of course all women facing breast cancer should request and get second opinions when they need more information, different treatment options and so on.
But it has become clear to me that folks need to keep in mind how the second opinion will become a part of their medical records and how the second opinion doc will communicate with the original oncologist, the primary care doc, and so on.
When Rachel was looking to get herceptin off-protocol her oncologist said no. On our own we went to see Hal Burstein at Dana Farber, making it clear to him that we were just coming for informational purposes and not for treatment.
But, "as a courtesty" to Rachel's original oncologist, he sent that doctor a note with a write up on the visit including his recommendation that she not get herceptin off protocol. The original oncologist then sent this to Rachel's primary care doc.
The problem came when we found an oncologist who would give Rachel the herceptin. He was "out of network" and the PCP at first refused to make the referral to him so that Rachel could be treated by him. This doc said that because there were two oncologists in Rachel's file saying no to herceptin, she could not overrule them (especially, I think, because one was a big wig at Dana Farber). At first Rachel had to switch from this PCP (who she liked a lot) to enroll with a new PCP who would make the referral. A lot of hassle, and upsetting because Rachel really liked her pcp. To the credit of the original PCP, when we sent her a letter explaining the rationale behind off label use of herceptin, she called right away and asked Rachel to return to her.
So, I'm not exactly sure why I'm telling this story, but I think it's important to remember that doctors' professional courtesy is not always a courtesy to patients. Some doctors Rachel has seen have asked outright if she wants them to write up notes from the visit and if so, where to send them. I'm not sure if there are laws/regulations regarding all this but maybe it's at least wise to ask before starting a second opinion visit?
Best to all,
Jeff
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