Yesterday while my husband and I were up at University Hospital, my parents took care of the kids, which is, I think, part of the everyone-turning-over-a-new-leaf plan. After we got home, my mom brought the kids back and I tried to give her as much detail as I could about the consultation - again, part of the everyone-turning-over-a-new-leaf plan. Apparently all of the ovary stuff was news to my mom because we had previously never gotten past her hangup with radiation. Egad. After I filled her in, she mentioned that she had just read an article in the New York Times, and of course I braced myself. However, she went on to say that the article mentioned that many women were completely unprepared for the pain involved in breast surgery, and that even the surgeons themselves didn't realize how much pain it caused.
After she left, I looked up the article, When Pain Persists After Breast Cancer Surgery, and it is actually very interesting considering my post from a few days ago, in which I discussed how unprepared I was for how painful the lumpectomy was going to be. The article mainly focuses on postmastectomy pain syndrome (PMPS), which is actually very common, and yet, in many cases, is not even discussed ahead of time. According to the article: 'Not all breast and reconstructive surgeons are aware of the extent of PMPS, which may explain why many do not mention it to their patients as a possible complication of surgery.' Additionally: '... it can also affect women who have had a lumpectomy, in which only the tumor and a small amount of surrounding tissue are removed. A study published in 2012 in the journal Breast indicated that women who had had axillary lymph node dissection — removal of some or all of the lymph nodes adjacent to the cancerous breast — were at particular risk.'
So I'm not crazy. Okay, so maybe I am, LOL, but at least I know this pain is very real. I am not trying to freak anyone out about lumpectomy, I just think it would have been helpful to have a better idea of what to expect. Dr. L did say that the surgery would 'irritate' the nerves and cause pain, but I really don't feel like 'nerve irritation' quite captures it. For the past two weeks, I've been wondering WTF is wrong with me and figuring I must be the Wimpiest Woman Ever, because I still can't easily lift my arm over my head. But apparently this is actually pretty common. Not that that's a good thing, because I would not wish this pain on anyone (okay, so maybe I can think of a few people, haha), but it is comforting to know that not only is the pain normal, but that being completely unprepared for the pain is also normal.
I've been reading the message board on breastcancer.org, and I am surprised by how many women had mastectomies for early-stage, node-negative cancer, when I never seriously considered a mastectomy. This wasn't even really based on anything emotional about my breasts, it just seemed like a mastectomy was sort of excessive for a little old lump. And my surgeon presented lumpectomy to me as the most logical choice. Then again, this is coming from someone who took 15 years to have torn cartilage in her hip fixed, so I'm probably more surgery-averse than average. And, of course, maybe I made a naive choice, considering I now need another surgery, after which, like, a third of my breast will be gone anyway. Regardless, I find myself praying for clean margins with this next surgery, because I know if they are not, the next logical step is a mastectomy. And that really doesn't sound fun.
honestly I also think you are more educated than a lot of other patients might be, so their instincts may be less evidence-based and more emotions-based ('get these breasts and their cancer off me').
ReplyDeleteAnyway, WOW. I LOVE that there is SO MUCH attention to breast cancer yet the BIG thing which is the pain part of it, is generally not even discussed! WTF! And that the pain can happen for lumpectomies but no one talks about it - wow!
Fingers crossed for immediate clean margins. Will be thinking of you.
It's interesting... the more I educate myself about this stuff, the more I realize that a lot of women are REALLY educated about a lot of things re. breast cancer, yet decisions are made based on emotion. It is easy for me to preach at this point, because right now my emotions match up with science. Nonetheless, there is so much ambiguity in all of it that emotions seem to be as good a reason for choosing a particular path as science.
DeleteHey, this is Stephanie Molina. But I'm having trouble posting since I'm logged into multiple Gmail accounts at once, so may go with anonymous to avoid the disaster that happened after my last attempt. :)
ReplyDeleteSo... finally got a chance to check your blog, and what good timing, right before surgery!!! So I can be a cheerleader. :) Go Nicole!!! :D
Don't second guess your decision on lumpectomy, you are making the most informed decision possible with the info you have on hand. No way to know ahead of time if they are going to get clean margins or not, and if not, you'll deal with it later just as you've dealt with everything else. But for now, you are making the best decision you can.
Also - if someone has a bruise two weeks after banging their leg on the bedframe, no one sees fit to go out to them and be like, what's with the bruise, that was 2 weeks ago! stop being a wimp! Yet when pain is invisible, people think it's made up. :S Just trust that are a total badass, so if you feel pain, then there IS pain, and anyone who doesn't think so is welcome to go get stabbed in the boob and report back later.