Becky sez: There’s another dumbass “breast cancer awareness” meme going around on Facebook. I’m not even going to dignify it by talking about it because really, when it comes to breast cancer awareness, FB memes are as useless as they are stupid. To bring some non-stupidity and actual awareness about breast cancer, I invited longtime Harpyness commenter MischiefManager to talk about her experience.
When I was 36, I was diagnosed with breast cancer at the time of my baseline mammogram. At that time, I was a stay at home mom with a three year old son and a two year old daughter. I had no family history or any reason to be concerned; I figured I’d just get a pat on the head and not have to worry about it for another five years. That’s not what happened. It was November 1, 1990.
After the films were taken, I was taken into the radiologist’s office. She told me, to my utter shock, that I had breast cancer and that I should contact a surgeon immediately. She gave me her phone so I could call my primary care doctor and get a referral. Then I got dressed and left.
I felt a mix of complete emotional paralysis and mental hyperactivity. I was too frightened to know what to feel, and my brain was spinning as I tried to take in what the news meant. I believed that my life was in imminent danger. The first thing I did was drive over to my husband’s office and tell him the news. His immediate reaction was to put his arms around me and say, “It doesn’t matter to me what you look like. I will always love you.” We held each other and I cried, then I went to my doctor and set up an appointment with a surgeon.
We didn’t tell anyone until after I saw Dr W (the surgeon) because I didn’t have the answers to all the questions I had. At that time, the web didn’t exist the way it does now, and it was still a time when the C word wasn’t discussed in polite society. I certainly didn’t know any survivors. We were pretty much on our own.
The day I saw Dr W, everything changed. The first thing his nurse said to me was, “Don’t worry, you’re not going to die.” She explained that I had DCIS, ductal carcinoma in situ, which means that there are cancerous seed cells in the milk ducts. But it was very early, so the cells hadn’t coalesced enough to form a lump. They were just scattered throughout the breast.
It happened that lumpectomies had been pioneered in Pittsburgh, where I live, so I knew that I was in a very good place to receive treatment. We have world-class medical facilities here as well as a major med school. If you have to get sick, this is one of the best places in the country to do it.
Dr W was a general surgeon, not a surgical oncologist. But he was one of the most compassionate, most thorough docs I’ve ever had. He always had time for all the questions I had and he made himself available to any family member who wanted to talk to him. He was always respectful of my choices and he encouraged me to get second opinions and take the time I needed to be confident about my decisions.
After he looked at my films and examined me, he confirmed what the nurse had told me. He explained that because the cancerous cells were so diffused, he wouldn’t be able to do a lumpectomy, but that I would need a mastectomy, and that he would remove a sample of lymph nodes from under my arm to biopsy as well. He scheduled me for a fine needle biopsy, which would confirm that the cells in my breast were indeed malignant. We put off discussing post-surgery treatment options and reconstruction until he saw the biopsy results. I went home that day still frightened but knowing that I’d be around at least a little longer to be with my kids, family, and friends.
The hardest thing I had to do was tell my parents. It helped a lot that I was able to reassure them that my cancer was very unlikely to be fatal. They reacted as they did to any other situation-my dad hugged me and worried; my mom got on the phone.
The question of post-surgery treatment was an interesting one. There still weren’t a lot of cases like mine, so there was no standardized medical response. It wasn’t clear whether I needed treatment at all. I was able to get an appointment with the doc who had pioneered lumpectomy, who practiced here. He swept in to the exam room with his acolytes, looked at me for about 3 minutes, then pronounced that he didn’t think I needed any chemo or radiation if there was no spread into the lymph nodes. The guy was a douche, but he gave me the information I wanted, and he was the best. I didn’t need a bff, I needed an expert, and that was what I got.
The night before my surgery, I borrowed a Polaroid from a friend and took a picture of myself. I still have it, and I look at it now and then. I was in the hospital overnight. The surgery was easy, and I had no problems with recovery. I went home with a big dressing around my chest so I didn’t have to look at the site for a while.
The biopsy of my nodes came back negative, so there was no reason for further treatment. I decided against reconstructive surgery. I didn’t want something artificial in my body, and I didn’t want more surgeries. And for me, it was important to confront the reality of my disease. Not everyone wants to go the route I did, and I think women should do what feels best for them. If you want reconstruction, by all means, you should have it!
I went to a support group very briefly. Everyone else in the group was a lot sicker than I was, and I felt like it wasn’t the right place for me. I did like being in a room where all of the scary words could be said aloud and no one would flinch or try to shut you down.
The year after I had my surgery was the first Race for the Cure in Pittsburgh. There were about 300 of us. Breast cancer was just coming out of the closet, as it were, thanks to inspiration from AIDS activists. It was a very inspiring, heartening experience at a time when there was still little public discussion of any kind of cancer. Now, our race gets over 30,000 people and raises a ton of money for research and mammograms for the uninsured. I have a lot of problems with Komen and the pink-ification of breast cancer, but I like seeing the money we raise here stay here.
Some things changed for me after my diagnosis. I stopped shaving under my arms, out of concern about edema. Once you have nodes removed, it’s harder for your body to handle infection in that area, so if you cut yourself shaving, you can end up with permanent swelling in the affected arm. It hasn’t been easy or comfortable, but I’m not going to risk my health because our culture thinks women shouldn’t have hair anywhere but on their heads. I don’t ever take off my bra in an open changing room. Other women don’t need to see my scar. I’m not ashamed of it, but there’s no reason to upset people unnecessarily. I do change in front of our daughter, though. I don’t think she even remembers what I looked like with two breasts.
I was very lucky. I was able to breast-feed both of our kids before my diagnosis—it can be done with one breast but it’s not optimal. I was in the right place at the right time, and I had good insurance. My mammogram was covered at my age where it wouldn’t be now. I had excellent treatment and a ton of support. My big regret is that our daughter now has a family history of breast cancer. This is not the kind of legacy anyone wants to leave to a child.
Sometimes people say that their illnesses have made them better people or that they wouldn’t trade the experience. I don’t know about either of those. I was pretty fond of my breast, and I miss it. But stuff happens and as body parts go, this one was pretty dispensable. The world of breast cancer has changed immensely since I was diagnosed, mostly for the better. We have more accurate diagnostic tools and less toxic treatments. But still, too many women die of this disease. If it’s caught early, it can be cured. We continually get conflicting messages from the medical establishment about how to care for ourselves-are mammograms accurate or not? Should we do self-exam or not? What we need to do is value women’s lives, and whatever will save lives is what we should be doing.