Michael and I drove to Boston this weekend to get a second opinion on the next steps, if any, of treatment. Since I was getting opposite opinions from my medical oncologist and my surgical oncologist, it seemed prudent to hear from someone else. So off we went to Dana Farber, to Brigham and Women's Center. We left Thursday night after an evening meeting I had, arrived at my friend Tim's house in Pittsfield, MA around 12:30am. After brunch the next morning, we headed off to Boston, and arrived just in time. We stayed with some former church members that night (thanks Frank and Marlea!), grabbed brunch with my friend Kim the next morning, and headed back in time for dinner in Rochester. A whirlwind, to be sure, and we were exhausted by the end of it.
Our experience at Dana Farber was good. Nice people (though not as nice as at Strong, if I may be biased!), and quite an operation. Sheesh. We had to do a lot of waiting - for one consultation, we were there almost 3 hours! Dr. Morgenstern was a nice enough guy, although he said several times that he had lived a year in Rochester (went to U of R) and it had NOT been a good experience. We were like, "Dude, lay off Rochester! We like it there, and actually live there by choice!" Oh well. He was still a good doctor.
So he didn't tell us all that much that we hadn't already heard, at least at first. First thing he did was break down the plan for a run-of-the-mill DCIS patient. First is a lumpectomy (check). With just that, there is a 20% chance that something will return, with 10% chance it would come back as DCIS (pre-cancer) and 10% chance it would come back as a true, invasive cancer. Of the invasive group, 90% of those women were cured. My risk grows 1% per year, plateauing at about 20%. Still with me? Okay. So radiation cuts that risk in half (for the primary cancer). Tamoxifen again cuts it in half.
So what he needs to determine, by talking with the tumor board there at Dana Farber, is how my particular history might affect those numbers, so that I can make my decisions with that in mind. But here is one thing he could tell us that has made all the difference: I told him I was concerned about taking Tamoxifen because I don't want it to put me in the high risk pregnancy bracket (because we'd have to wait to start trying to have children until I'm 34). He said, "I think Tamoxifen would be beneficial for you, but there is no question in my mind that it will be just as beneficial for you if you start it after you have children."He has said the same thing to other women in my position, but who have invasive breast cancers. I'll be so closely watched these first few years, and the risk of DCIS returning is so low at first (increasing by the year), that he feels starting it after children would be just fine. Hooray!
He also said that if I want to eliminate my risk entirely, I should have a mastectomy. I knew this. So I guess I need to look at these numbers for risk factor that they're coming up with, and talk again with my doctors here about this. But Michael and I talked, and the way we see it is this: There doesn't seem to be any further treatment at this point that NEEDS to happen right now. So we can get married, start a family, and then think about the next treatment I should do, whether Tamoxifen or a mastectomy. Which means... I THINK I'M DONE.
I mean, obviously I still have some appointments, and tri-monthly check-ups, and bi-annual scans (MRIs and mammos and ultrasounds), but I'm used to that. I can dig it.
So, good news! Thanks for all your prayers and thoughts and gifts and everything through all this! I have appreciated it so, so much.
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