I went to the HBOC clinic at the Hillman Cancer Center on November 2. At this point, I don’t remember most of it. All I know is, I waited almost 2 hours to be seen, and it was only when I told the receptionist that I was leaving that she remembered to tell the doctor I was there! This process was already not off to a great start. I met with two doctors: Kristin Zorn and Rachel Jankowitz. Neither of them were particularly warm nor fuzzy. Zorn recommended a complete hysterectomy instead of an oophorectomy (a word that I cannot spell correctly on the first or second try). She feels that the less endometrial cells that remain, the better. The effects are all the same and it’s not a much more significant surgery, so why not? If anyone reading this knows differently, please do let me know! I was pretty convinced – I will probably have her do the surgery since she’s done it a zillion times and is the most highly recommended gynecological oncologist in the city. I also met with a genetic counselor: Darcy Thull. I left with a list of things to do:
- Email scan of BRCA results to Darcy Thull
- Call Rhode Island Hospital genetic counseling to have records sent to Darcy
- Call to schedule consults with Kandace McGuire and Gretchen Ahrendt, breast surgeons recommended by Jankowitz
- Call to schedule mammogram for December
- Call to schedule MRI for May (be sure to call the clinic a month before the appt to get pre-authorization.
When I left with this list, my main thought was, “Thank god I am an organized, literate person.” I went there alone, I took my own notes, and I got most of the things on this list done within a few days. But what happens to people who aren’t as savvy about these things? It made me think there should be an HBOC concierge or something – one person who keeps track of this whole thing throughout, helps you make appointments, find the right people, get to the right places. I find it overwhelming – I can only imagine what it must be like for people who aren’t as educated or don’t have the same sort of support I do.
Blogging BRCA 