Some days you wake up and can't keep a thought straight in your head and spend too much time criticizing the things you are not accomplishing to really feel capable of doing anything at all. On these days, you might spend couple hours weeping over photos of reconstructed breasts in your pajamas on the sofa. And this pity party might be interrupted by a man coming to take the for sale sign out of the yard next door blaring Rush Limbaugh "hateful things hateful things POPE Obama hateful things..." and it might make you angry enough to stand in your picture window and give him the evil eye like a total maniacal nut job until he finishes his quick work. And if that happens, you can't just resume the pity party. You have to start doing something else. Like showering and making coffee.
And trying to think coherently about yesterday's meeting with the surgeon.
The idea of choosing what kind of surgery to have is overwhelming - so overwhelming, in fact, that it is tempting to put it to a vote. What kind of surgery do you, my dear few readers, think I should have? Please leave your response and rationale in the comments. All suggestions welcome; treat this like a surgery caucus - everyone is a write-in.
Every time we've seen a new doctor, they've shared some basic information that the previous doctor should have, but did not. Example no. 1: When I saw the genetic counselor last week, she told me that the hormone therapy I'm supposed to have lasts for FIVE YEARS, which is all well and good in terms of my whole life, but dang! That's a long time and means no kids until I'm done which means babies in my mid to late 30s which means greater risk of breast cancer in addition to less safe pregnancy and more likely developmental problems for the baby. Example no. 2: Micropapillary means more aggressive cancer, which is what I have, which is the first piece of new information the surgeon shared with us yesterday. The second piece was that because of this aggressive nature, the likelihood that I'll be advised to undergo chemo is high. Then, of course, we talked about surgical options but since I'm still waiting for the results of my genetic tests, I don't feel like the most informed surgical decision yet. So we are waiting again. Here's what I'm thinking:
Do I have HBOC, BRCA1, BRCA2?*
No Yes
lumpectomy double mastectomy?
probably... maybe?
Fuck.
I realize it isn't the case, but it feels like it is very possible to make the wrong choice. What if I pick lumpectomy and I should have had a mastectomy and it comes back? What if I pick mastectomy and really struggle with being left scarred because even the reconstruction scars are pretty rough? If I get a lumpectomy, I will need an annual mammogram (even though everyone has said they are poor tools for creating images of my breast tissue and that even my current 1.7cm tumor is barely visible in mammogram images) and mri, spaced every six months forever. Would it be comforting to know they were checking so frequently, that they'd find anything that might show up early and I would be safe? Or would it be frightening to have to check all the time, cancer looming, posing a perpetual threat of recurrence? I think I lean toward the latter.
I think the thing that scares me the most about surgery is that the extent of the operation and the recovery time and all of the consequences are up to me. While that could be empowering for some people, I am indecisive and hard on myself, so it just feels like a lot of pressure. Is a double mastectomy necessary? Am I being melodramatic and letting fear get the best of me? Is a lumpectomy enough? Is it going to come back NO MATTER WHAT I DO? The rational part of me knows that life will go on and be good and that whatever surgery I choose will be the one that is right for me, and the emotional side is interfering with a litany of (overblown?) fears and distractions that make it tough to even look at the numbers and weigh my odds with each option.
*known genes linked to breast cancer for which I am being tested.
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*Update, 7.24: The decision has been made! (out of necessity after a second opinion and more serious diagnosis from U of M) I will have a mastectomy because there are three pre-cancerous lesions in three different places that need to be removed in addition to the known tumor which is twice the size we thought it was. This is a strange relief. Read more here.
My mom said that she is so glad she picked a lumpectomy*
ReplyDelete*I just started following and am reading from the start to the most recent. I don't know if you've made this decision yet. It also sounds like you have the same cancer that my mom had.