Tumor Board

My husband and I meet today with my medical oncologist. This is a physician who does not believe that she and I should be working cooperatively and exchanging concerns, info., etc., at least at my end.

Following the first and second pathology reports for a recurrence March 2015 of a HER2+, Hormone -, Grade 3, bc in the form of microcalcifications--the first time it was a 4 plus cm tumor that was visible from across a room--there was a great deal of confusion. First I had DCIS; then, supposedly on more review, the report then added IDC. An addendum indicating the additional "finding" was to be included in the report: so said my oncologist. Forty days later, no addendum. Then she explained that no addendum would be provided by the pathologist and we were not to expect one. The outside path report was merely an incomplete copy by one pathologist partially and selectively quoting another. This added nothing to clarifying my path status. I was going to have a lumpectomy to get something, but exactly what, how large, degree of invasiveness, etc. mostly a mystery.

The same sort of confusion arose with whether I had one or two tumor boards. My oncologist provided a one sentence summary of a wide spectrum of options, but avoiding what specialist, e.g., called for a mastectomy.

Today we asked the oncologist for a copy of the one board she told us took place. According to ASCO, tumor boards should put in writing the date, the members present and their positions/specialties, and, at a minimum, a summary of the meeting, esp. if a consensus was reached or not.

Following our request for a copy the oncologist appeared uncomfortable and immediately stated that a patient is never privy to the tumor board report. She claimed it was part of medical records only available to certain hospital staff, that the accreditation board did not allow release to the patient, and a few other reasons that struck us as arbitrary and made up on the spot. My husband spent over twenty years at a far larger hospital in several senior level clinical positions and immediately assessed this answer as highly questionable, if not outright bonus. All medical records are the property of the patient, are paid for by the patient (via insurance, copays, etc.), and are open and meant to be for the information, history, and us by the patient. This does not even get into HIPPA protections.

Have any of you asked for and received a copy of the tumor board, whose work is done on your behalf and ultimately is part of costs to you? If you have rec'd a similar block to access, could you share the reason/s for denial? I intend to follow this up and will share what I learn? In the meantime, your experiences could help many.