Yesterday the New York Times printed an op-ed by Angelina Jolie about why she had an elective double mastectomy. The collective Internet is praising her. I have a slightly different perspective.
My sister Fran was 31 when she got her first breast cancer diagnosis.
“I found a lump,” she said.
“Yeah, well, your boobs are getting old. It happens,” I replied. We joked and lived in denial while we waited the 9 days after the biopsy. It turned out she wasn’t suffering from old-lumpy-boob syndrome. She had cancer.
Fran was a stay at home mom who spent her days chasing her two year-old daughter while daydreaming about adding another baby into the mix.
The cancer was localized in her right breast and getting a double mastectomy wasn’t fashionable in 2005. Fran’s surgeon told her that it was uncommon to remove a breast that didn’t have cancer and that to remove the other breast was “aggressive” and that they might be “removing it for no reason.” (Oh, how times have changed!)
But Fran insisted, “I would rather have them both removed and reconstructed and have peace of mind. I know if I didn't I'd always be worried and checking my remaining breast daily probably. And hey, who are we kidding? Two new breasts are much better than one new one and one droopy, shriveled up, breastfeeding boob.”
And so at 31, she endured chemo, radiation, and a double mastectomy. Fran was sure that having a double mastectomy was the biggest key to her long-term survival. The more she thought about it, the more confident she felt in her decision. Fran thought that when they remove the breast, the cancer goes with it. That she would be instantly cured. Ta-da!
The actual removal of her breasts wasn’t so bad, she said. The hard part was the reconstructive process; they put expanders in the chest that are filled to be rock hard to stretch the skin and pull at the pectoral muscles. The expanders get bigger at each check-up and work their way from AA to whatever your desired cup-size may be. It's like going through puberty all over again, but crammed into the period of a few months.
For weeks, Fran complained that she couldn’t sleep at night because of the discomfort, but it was all going to be worth it, right? She was going to have perky new breasts and was never going to have to think about breast cancer again, right?
In 2007, Fran was tested for BRCA gene mutations. Her results came back positive for BRCA2 gene mutation. This meant that her cancer was genetic and she had an increased chance for ovarian and uterine cancer. Again, she opted to go the aggressive route and chose to have a complete hysterectomy at age 33. “I’m giving up more of myself to save myself,” she said.
Fran decided that she wanted to do the Susan G Komen 3-Day in 2010 to mark her 5-year anniversary. We signed up for the walk and we got excited to celebrate; my sister was cancer-free and life was good! We bought the nice, expensive walking shoes that we would have never considered otherwise. These were party shoes!
Only it turns out that her double mastectomy wasn’t the magic answer she had hoped for. That 5% chance that Angelina Jolie mentioned? That’s where my sister found herself.
In 2010, we were living about five hours away from each other I had driven over to visit for the weekend. While we were having dinner I looked at her neck and squinted.
“What is that?” I asked.
“I don’t know, I just saw it a couple of days ago. Should I call the doctor?” she looked at me with pleading eyes. She wanted me to tell her that it was nothing. But I couldn’t. We knew that the cancer was back before she even stepped into the doctor’s office.
Her cancer came back so aggressively that in the few short weeks it took to get an appointment with her oncologist, she was diagnosed with Stage 4 Breast Cancer. It had metastasized and it was everywhere. It was in her lymph nodes (the lump in her neck), her spine, and worst of all it covered a large portion of her liver. She would never be cured. The plan of attack was to try to manage the spreading and to preserve quality of life for as long as possible.
It turns out that “as long as possible” wasn’t long at all. Three months after her diagnosis in 2010, Fran was gone. It happened so fast. We hardly had time to process the news of the new battle and then abruptly the war was just…over. It wasn’t fair. My sister died of breast cancer, even though she had no breasts.
In her op-ed, Angelina wrote: “I can tell my children that they don’t need to fear they will lose me to breast cancer." Unfortunately, I know that's not true.
Please don’t misunderstand me; I’m glad Angelina Jolie’s recovered from surgery with the support of her husband and children, and I hope that this choice leads to her never having to worry about breast cancer again. However, I’ll never be okay with touting a major surgery that requires months of recovery and reconstruction as a quick fix to a genetic problem. It’s not quick. Sometimes it’s not a fix, either.
I believe that with knowledge comes power. It would be wonderful to be an educated society who knows what their options are when faced with an issue. Yes, a double mastectomy can greatly reduce your chances of being diagnosed with breast cancer in your lifetime. Yes, it’s a good idea to be tested and to know where you stand genetically, especially if you have a family history of cancers. However, aggressive elective surgeries are not the only answer. And they aren’t guarantees.
You might be wondering right now if I’ve been tested for BRCA2. Surely only a crazy person would choose not to get this test when a family member died due to complications of this gene mutation, right? The answer is, for now, I have chosen not to get tested.
Why? Because I don’t want to know. Not right now. I’m 27 years old. I don’t want to be burdened with the knowledge that I have a gene mutation. I don’t want to be rushed into having kids so I can have a double mastectomy and a complete hysterectomy by 30 “just in case.”
I perform self-exams and have a well woman’s checkup every year. Today that’s good enough for me. I’m not going to be pressured into extreme decisions just because a celebrity made them. No one should. And I think that Fran would agree. Yes, knowledge is power, but ignorance is bliss.