Choosing a mastectomy before a cancer diagnosis Image by: Deborah Jaffe
Carrying the BRCA 1 gene doesn't guarantee developing breast cancer, but some women at high risk are choosing mastectomies to prevent a bad diagnosis. Theresa Quick shares her story about making this impossible decision.
Cancer is a family tradition for me. Both of my grandmothers died of the disease before I was born. My mother had breast cancer when I was a little girl and died of ovarian cancer when I was 22. I’m not the person I would have been if my mom hadn’t been sick. Cancer consumed my youth and dominated my life.
I was five or six when my mother was diagnosed with breast cancer. I cried for weeks when her hair started falling out, and I remember seeing pieces of hair on her pillowcase. Kids at school teased me because my mother was bald. I was always scared to go to sleep, thinking she wasn’t going to be there when I woke up.
For a lot of people, breast cancer is theoretical. For me, it has always been real. My mother’s cancer went into remission a year after her diagnosis, but I was terrified it would come back. And I always assumed I was going to get breast cancer too. It was a rite of passage for the women in my family.
When I was a teenager, my mother said, “I've got some really bad news for you. They found cancer, and I have to go in for surgery next week."
This time, it was Stage 4 ovarian cancer. I looked out the window and thought, How can people still be moving? Don’t they realize the world has stopped? Mom lived six more years. Near the end, she wanted to be at home, so my sister and I were trained to clean the ileostomy bag, give needles and change bandages. By then, Mom couldn’t swallow anything. It was a very, very difficult time.
I had to compartmentalize my emotions and put them aside so I could do what had to be done. I started mourning her before she was gone. It was almost unbearable to spend every second waiting for it to happen. I didn’t want her to be gone; I just wanted that part to be over.
Being diagnosed with the cancer gene
In my early 20s, I figured I had a few freebie years before I would have to worry about getting cancer. But, at 24, I found a lump in my breast. It was benign, but after that, I went to the hospital twice a year for MRIs, ultrasounds and mammograms.
At 27, I started to seriously consider having my breasts removed. My mother carried the BRCA 1 genetic mutation, which is linked to breast cancer and ovarian cancer, so I decided to have a blood test to see if I had it too. The genetic counsellor called and said, “I have amazing news: You’re negative.”
My girlfriends and I went out and celebrated. I thought I had lucked out. About a month later, the counsellor called again. There had been a mistake. I was positive for BRCA 1. It was a big blow emotionally, but it made my decision a bit easier. I always knew I would do something proactive. I couldn’t live the life I wanted with the risk of cancer hanging over my head. The most important thing to me is to live without fear. So I started booking medical appointments.
Coping with cancer
Most Canadian women who have mastectomies don’t undergo reconstructive surgery. Given my age, I didn’t want to deal with prosthetics for the rest of my life, so reconstruction seemed like the right choice.
I had to wrap my head around the physical part of the surgery. There was a chance I would lose my nipples and have horrible scars. I was sad that I wouldn’t be able to breast-feed, and that I would be sacrificing the sexuality associated with breasts too.
The severed nerve endings would mean my breasts would no longer have any sensation. But, I thought, These are the things I have to give up in order to feel free. I went to a show-and-tell event at Toronto General Hospital where I met women who had been through mastectomies and reconstructive surgeries. Certain things shocked me, such as the way the implants felt hard like grapefruits. They don’t move at all – kind of like Barbie boobs.
And the scarring I saw was very difficult to come to terms with. It was a pivotal experience. I went home that night, cried, and had a “poor me” moment that stretched into an hour. And then I thought, I’m not doing this to get a boob job; I’m doing this because of what I’m going to get out of it. Even if I never wear a bikini again and even if I spend the rest of my life wearing a bra in the bedroom, I will be OK with this decision.
My mom left me with the confidence to know that the person I am isn’t just the person in the mirror. It’s something deeper than that. I believe that if she could have had the same choice as me, she would have had the surgery. I felt empowered.
Enduring breast cancer surgery
When I was brought into the operating room on Nov. 8, 2011, about 10 people were standing around a table that was shaped like a cross. As the anesthetic was administered through my left arm and I started to fall asleep, I thought, I am my mother’s daughter and, whatever happens after this, I will face it with her courage.
I woke up a few hours later, shocked at the pressure on my chest. It felt like there was an elephant standing on me, and I was out of breath just from talking. Later, once I got home, I couldn’t move my arms well or push myself out of bed. But by the next day, I was up and walking.
I had prepared myself for incredible pain, but it wasn’t as bad as I had expected. I had tissue expanders in my chest. They were like little empty water balloons that I had saline injected into periodically to create a space to hold breast implants. I finally got the implants – my “silicone puppies” – in July. At last, the surgeries are over.
Life after breast cancer
This process has been so much better than I had imagined. I didn’t realize until after the surgery how much weight was being lifted. It took weeks to understand that I didn’t have to think about breast cancer again. I didn’t know how much of a burden I had been carrying until it was gone. I never hated my body.
I had great breasts before the surgery, and they were very hard to give up, but I don’t feel less beautiful than I did before. In my mind, even if I got hit with a shovel, the beautiful part would still be there: At the end of the day, confidence is still the sexiest thing about a woman.
By sharing this story, I want to make a difference. If I can help even one woman make the decision that’s best for her, I’ll meet my goal. Surgery was the right choice for me, but it’s a personal thing. My sister also carries the BRCA 1 mutation, but she hasn’t decided whether to have a mastectomy.
If a woman decides she is OK living with a high risk of cancer, that takes just as much bravery as what I went through. The world doesn’t end if you test positive for the gene. I have seen how short life can be. I don’t have any regrets. I just want to be happy.
Genetic testing for breast cancer
“Most of us don’t need to worry about hereditary breast cancer,” says Mary McCullum, a nurse educator with the B.C. Cancer Agency’s Hereditary Cancer Program in Vancouver. “That’s a really critical piece of information.”
Still, demand for genetic testing has grown steadily since BRCA 1 and BRCA 2 genetic mutations were first linked to breast cancer and ovarian cancer in the mid-1990s. “If we looked at our referral rate,” McCullum says, “it has continuously increased over those years.”
At the Hereditary Cancer Program, the first step to taking action to prevent cancer is genetic counselling. If a patient meets certain criteria and chooses to go ahead with genetic testing, a blood sample is taken. It can take up to six months to get the results; however, if a close relative has already tested positive for a specific gene mutation, women get their test results much faster.
“The test is complicated,” says McCullum. “It’s like trying to find a spelling mistake in the Vancouver and Toronto phone books.” Women who are at high risk for breast cancer can choose to undergo preventive mastectomies or intensive screening, including regular MRIs.
Some patients opt to take drugs such as tamoxifen. “If you want a guarantee against breast cancer, I would suggest having surgery,” says Dr. Steven Narod, director of the Familial Breast Cancer Research Unit at the Women’s College Research Institute in Toronto. “If you want to keep your breasts, I would definitely combine the MRIs with tamoxifen.”
Narod says at least 200 Canadian women, of which nearly half are in Ontario, have preventive mastectomies each year. “A preventive mastectomy gives you a clean bill of health,” says Narod, who is renowned for his key role on the team that identified the BRCA 2 gene.
But he adds that there’s still the risk of ovarian and other cancers. “To the woman who has a bilateral mastectomy, I say, ‘Go home. I never want to see you again.’ We have no special surveillance for her. Her risk of breast cancer is much, much less than the average woman.”