Each of us has her own reason for making the decision to have a mastectomy. For some women, mastectomy is one of several possible treatment options. For others, mastectomy may be the only option. As for me, I was 39 years old with two kids and a significant family history of breast cancer. My mother, grandmother, and maternal aunt had all been diagnosed: my mother in her 50s, my grandmother in her 80s, and my aunt in her late 30s. And here I was, almost 40 years old, and I had only been for one mammogram so far. What I know now is that with my family history, I should have been getting a yearly mammogram and twice-yearly breast exams beginning at age 35. I had my first mammogram at age 32, when I thought I felt a lump. My wonderful OB/GYN at the time, who had seen my through the birth of my first child, felt it too, and another lump besides. She immediately sent me for a mammogram that, thankfully, came back normal.
So, there I was seven years later. Life was busy, and I was in the trenches of parenting two wonderfully-spirited young girls. I was muddling along, in full denial of the fact that I have a real risk of breast cancer and should go for another mammogram. Actually, I wasn't in full denial. I had made several appointments -- and I had canceled several appointments. I did a monthly self-exam in the shower but sometimes I didn't really know what I was feeling. Looking back I may have felt a lump in my right breast but I was never exactly sure what I was feeling so I didn't pursue it -- a bump here, a rib there. What was cancer going to feel like anyway?
In late February of 2008, I finally went for that mammogram. I was nervous as hell. They took the pictures and then told me to wait for the results. I waited a long time before they finally sent me home, but I was nervous because I had a feeling something was wrong. That night my primary care physician called me to say that they found something and they wanted me to come back for additional views. "What we might be looking at here is invasive ductal cancer," she said. I'm pretty sure I almost died right then. I went back the next morning and the mammogram technician took additional images. The radiologist called me in and showed me the picture of my right breast blown up to the size of my head. There were some red pen marks circling the "problem" areas.
I don't think I ate or slept much for the next few weeks. I did cry a lot though; I allowed myself only once to go "there." You know the place. The place where I am not here to take care of my two girls, who at the time were ages 3 and 8.
My physician referred me to an affiliated hospital for a biopsy. The results came back as DCIS (ductal carcinoma in situ) Stage 0 cancer. I was both shocked and elated -- shocked that age 39 I would be diagnosed with breast cancer of any kind, elated that after weeks of worrying, my cancer was found to be Stage 0, which meant that it hadn't spread beyond the milk ducts into the surrounding breast tissue. Maybe I had gotten lucky.
I decided that I would undergo a bilateral mastectomy with immediate reconstruction. That's when they do the reconstruction within the same operation, right after the mastectomy part. I remember the frustration I felt at not having the mastectomy sooner. I wanted to fast track the whole thing. I wanted those things off yesterday. But I would have to settle for having the surgery a month or so after my diagnosis on April 16, 2008. I knew that the recovery process was not simple, but it wasn't awful either. I had watched my sister's recovery from a similar procedure a few months earlier and I am a rehabilitation professional myself, so I had those things going for me. But I still felt there was a lot of mastectomy recovery information I just didn't know. I turned to the Facing Our Risk of Cancer Empowered (FORCE) online message boards on a daily basis. FORCE is a non-profit organization devoted to providing support to women with increased familial risk for breast and ovarian cancer. The women posting on the FORCE board were an excellent source of information about hereditary breast cancer and various post-mastectomy recovery issues. And they were so supportive that I couldn't help but feel at home there.
When I went back for my pathology results a week after the surgery, I was surprised to learn that my breast cancer had been invasive. Although the small biopsied area had only shown DCIS or Stage 0 cancer, there was also a small area of invasive cancer as well as other areas of DCIS and cancer extending into the lobules. So in the end, I would undergo adjuvant chemotherapy. And as far as I was concerned, the mastectomy had been the best choice for me and the pathology results confirmed it. I was happy with how I looked reconstruction-wise and I hadn't really had too much pain. Discomfort yes, but full-on pain, not so much of that really. And now I could rest easy that the cancer was gone and if I could just get over this next chemotherapy hurdle, life would go back to normal.
And it did.
Excerpt from Now What? A Patient's Guide to Recovery After Mastectomy (Demos Health, 2012) by Amy Curran Baker, MA, OTR/L with MaryBeth Curran Brown, RN and Linda Curran, MSN, APRN.
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