Lo, finally I know something more, and that something is that I have some decisions to make. I met with the radiation oncologist today - Dr. Hong Zhang, a very sweet, compassionate, and energetic Asian woman. For the first time today, I went to Highland Hospital, which, while a part of the University of Rochester system (aka same as Strong), is a new facility to me. Michael and I both found our way there, and had good interactions with people from the start.
The first person we met with was the nurse. Then the physicians assistent, who did an exam on me. Then they sent in Dr. Zhang. All three women were very excited about Michael and me getting married, and Dr. Zhang couldn't stop saying how cute we were together. :) On our way out at the end, the nurse and PA said, "Hey, we want invitations to the wedding!" Cute.
So Dr. Zhang went into detail about what was discussed at the Tumor Board on Monday. They had pictures of my insides up on the wall, my records in front of them, etc. She said my treatment for Hodgkin's was very good - I was a part of a trial that included much lower doses of radiation, so she was pleasantly surprised by that. (Apparently this low dose, though not normal in 1999, is getting to be the norm now. I helped!) First she laid out what is standard, which we already knew: a patient with my diagnosis (DCIS) would have a lumpectomy followed by radiation. The purpose of the radiation is to catch any remaining cells, thus decreasing the chance of reoccurence. (It does not decrease the risk of secondary cancers, however, which is why I'm in this situation!) There are different ways she could do radiation, and would do her best to avoid my heart.
But, there are a couple things that make me special (well, I hope more than a couple!). One, I'm young, pre-childbearing. And two, my medical history. That said, the board came up with two options for me, both of which they all felt would be medically feasible and successful:
Option 1: I have a re-excission surgery. Although they had healthy margins around what was taken out the first time, 80% of the time when the same cancer returns, it is within one centimeter of what was there before. So Dr. Skinner would go in and get a centimeter worth. Since the part with the 3mm margin (the closest one) was close to the edge (my skin), she'd probably just take out as far as she could until she got to skin. Then they would watch me extremely closely over the next several years.
Pro: I wouldn't have to have radiation again. I have the opportunity, should this return, to get a mastectomy, or even another lumpectomy. I would probably find breast-feeding more successful.
Con: This isn't the standard, which always feels a little scary. All the risks associated with surgery. Already my breast size has changed noticeably, so this would add to that. (Vanity, vanity, all is vanity.)
Option 2: I have radiation. Again, there are different ways to do this, including coming in only for 2 weeks, twice a day, and receive higher doses.
Pro: Avoid surgery and possible breast deformation. It IS the standard, and has a high success rate for wiping it out. It's what I had already prepared myself for.
Con: If this does return someday, surgery is made more complicated by the radiation - a mastectomy may not be possible. While my breast shape would be maintained, the function not so much - they usually discourage breast-feeding from a radiated breast (plus it probably won't perform anyway).
So, lots to think about. Michael had to run off to a meeting right after this, so we haven't had a chance to process together, nor have I talked to my parents or friends. On Monday I will meet with the medical oncologist for the first time, and my parents will actually be with me for that (!). We can discuss this at that appointment, as well as the possibility of taking Tamoxifen, which is an estrogen blocker and preventative, but I would be unable to get pregnant while on it. The usual amount of time to be on it is 5 years, which doesn't really jibe with my life plan to start a family as soon as possible. I'll be interested to hear what the med onc has to say about this.
Whew, that's a lot. Feeling a little overwhelmed. I'm glad I have the day off tomorrow to think about it.
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