a (long) note on second opinions

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

Jeff, I'm sorry but I don't remember where you are, US or Canada (I think U.S.?) Anyway, I ran into a similar problem. I started out with a pretty dopey surgeon in my small home town, and when I finally wised up and got my pcp to refer me to doctors in Seattle, the very busy oncologist I saw happened to copy a letter that he wrote to my pcp to the original surgeon -- probably from seeing her name on the original biopsy report in my file. It really IS intended as a simple courtesy so that patient care is better coordinated, but at the time it really upset me. I wanted no more to do with her and all I knew at that point was that if things turned serious I might indeed have to resort to some kind of confrontational battles later on.

You are right; if you are not intending to change providers, take a written request with you when you go to the second opinion provider, stating that you do not wish copies of your visit to be sent to any other providers unless you actually begin treatment with the doctor providing the second opinion. You can always throw it away if you decide at that office visit to continue with that provider.

In my case it would have been a good idea for me to provide a written request to my new surgeon and my oncologist when I met them, naming the doctor who should not receive copies of anything, just as added protection. As it was, I ended up handwriting a letter on the plane down, which was where I discovered the notation indicating a copy had been sent to the original surgeon. I described precisely why I did not want her to receive a copy, although that really was not necessary.

A.A.

Jeff, Thank you for your thoughts about 2nd opinions. I never thought for one second that Dr. Sheilla Donnelly MD from Dana Farber would verbally tell me one thing and then put in writing just the opposite. What a lesson I have learned from this. It makes me wonder as I go for other 2nd opinions if I can really trust them. After spending the weekend having a pity party for myself I am now back in the fighting spirit. I now laugh when I think of the times my oncologist has told me to avoid stressful situations. He is the one who is stressing me out!!!!!!!!!! Many Thanks Claudia

Claudia,

Glad to hear you're feeling better...

Do get in touch (melnick@babson.edu) and I'll tell you all about how we eventually did find a guy in Boston who was willing to give Rachel herceptin off label...

Best,
Jeff

Jeff and Rachel, I did email you on Monday did you not receive it? Oh heck I have been know to email someone and then forget to send it. If you did not receive the email I will send you one again. Thanks Claudia

Hey Claudia,

No word from you--my email system has a wicked strict filter on it and sometimes it "quarrantines" things that should have got through.

I check religiously so if you don't hear back from me within a day it means I didn't get it.

If you want to post your email address on the board for me, I'll write you with the name of Rachel's herceptin-giving oncologist, etc.

Jeff