HBOC Clinic in Review

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.


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