Here’s the short version of my story: a few months ago, I was diagnosed with DCIS, a highly curable, non-invasive form of breast cancer (some people consider it to be pre-cancer, but most health professionals think of it kind of like the not-bad kind of skin cancer…something that has to be dealt with, but it’s not going to kill you.) But because of my family history (dad with breast cancer – big red flag), my breast surgeon recommended that I be tested for the gene mutation that increases the risk of breast and ovarian cancer. On New Year’s Eve, I found out that I have the BRCA2 gene mutation. I spent about 48 hours thinking about my options, and quickly decided that I did not ever want to deal with invasive breast cancer or ovarian cancer, so the best course of treatment for me was to have a double mastectomy and oophorectomy (which I think is a funny word.) I’m sure that to some people, 48 hours doesn’t seem like a long time to think about such a big decision, but I had really started thinking about it a couple of weeks earlier, when I had the blood test. After meeting with the breast surgeon again and a plastic surgeon, I decided that I would have reconstruction with silicone implants, vs. a transfer of my own fat.
I admit, I did not do a lot of research about what to expect from a double mastectomy. Honestly, a lot of people kindly offered to connect me with other breast cancer survivors and people who had mastectomies, but I didn’t feel like I belonged in other group. I was fortunate that I didn’t have invasive cancer. so I didn’t belong in that group. But I did need treatment, so I didn’t feel like I belonged in the purely prophylactic mastectomy group either. But it was probably mostly because I don’t really like to talk on the phone with people I don’t know.
I had spoken with a few friends who had had mastectomies and who told me it really wasn’t that bad (they were right.)
But in hindsight, here are the things I learned that I wish I had known before my surgery:
1. You can make a lanyard and wear your surgical drains around your neck. Once a nurse suggested this, it made living with the drains so much easier. I had been pinning them to the inside of my clothes/nightgown, and I could never get them in a place that was comfortable. At one of my post-surgical visits, the nurse made a lanyard out of a long, thin strip of gauze. And I wanted to kiss her.
2. The days were way easier than I thought they would be and the nights were way more difficult. I’m not used to sleeping on my back, or sleeping in one position all night. I would wake up every couple of hours, feeling really stiff and sore. After a few days, I got a wedge pillow and one of those pillows that you use to sit up and read in bed. Each time I woke up in the night, I would switch to the other pillow. So if I couldn’t roll over, at least I could be at a different elevation. Sleeping with a pillow under my knees helped too.
3. The reconstruction process was more painful than I expected, and I got more uncomfortable with each one. If I had it to do over, I would reduce the amount of saline they injected each time. It would have meant more reconstruction treatments in total, but each one would have been less uncomfortable and debilitating. (I had 100 cc’s put into each breast at each visit. I would split the last two into four of 60-50-50-40 if I had it to do over again.)
4. During the day, I was most comfortable sitting up in a living room chair. I absolutely did not want to be on my back any more than necessary. So I got a neck pillow so that I could nap in my chair.
5. I did not look nearly as bad as I thought I would after the surgery. Mainly, I just looked flatter than before. (I had nipple-sparing surgery,though, which made a difference.) I was really afraid to look at myself after the surgery, but it was really not so bad.
6. I was most comfortable wearing my husband’s button-down shirt after the surgery (while I still had the drains.) It was big enough that I didn’t feel restricted (and it accommodated the drains), and I didn’t have to lift my arms over my head to put it on (which, frankly, I really couldn’t do for a couple of weeks.) I had bought a number of button-down shirts in my size, which I did wear after I got the drains out, but they weren’t large enough at first. I also bought a bathrobe, thinking I would want to wear it, but it was too hot to sleep in, and I didn’t feel like changing my clothes at night for the first week. (Once a day was enough.) So that was a complete waste of money.
7. I was able to shower and wash my hair without help starting two days after surgery. This made me feel so much better. My wonderful sister (who cleaned my drains out for me three times a day, bless her) helped me in and out of the shower the first few days, but after that, I felt well enough to do it on my own.
I am now finished with the reconstruction treatments and will have these rock-hard chest expanders swapped out for nice, squishy silicone implants a month from tomorrow. And then this chapter of my life will be behind me.
But all in all, it was not nearly as painful a chapter as I expected it to be. And for that, I am very grateful.