Angelina Jolie sparks a national conversation about breast cancer treatment by revealing her decision to undergo a preventative double mastectomy after testing positive for BRCA1, a genetic mutation that increases the risk of developing breast cancer. We take a look at some options available for women on Chicago Tonight at 7:00 pm.
Jessica Shaw, a 22-year-old local woman who also chose to have a double mastectomy, shared her story with us.
Can you tell me about your family history with breast cancer?
My mom was actually the first in our family to be diagnosed with breast cancer, at age 36. Luckily, it was caught at stage 1 but she was so young. Afterwards, she got genetic testing done and tested positive for BRCA2.
What’s the difference between BRCA1 and BRCA2?
If you test positive for BRCA1, you have a slightly higher risk of ovarian cancer than if you test positive for BRCA2. But both increase your risk of developing breast cancer.
When did you decide to have genetic testing done to find out if you were at high risk for developing cancer?
Legally, you have to be 18 to get the genetic test done. My older sister Heather took the test when she turned 18 and so did I. We both tested positive for the BRCA2 mutation. Following that decision of having the blood test, we decided to research our options to see what we could do preventatively.
When you found out you tested positive, what was your initial reaction?
It was certainly a shock. I grew up knowing that was a possibility for myself and my family. It was a process of dealing with the fact that I’m not immortal and I had to discuss and research my risk factors. I wanted to be proactive about my health.
Did the doctors tell you how likely you were to develop breast cancer based on your genetic testing? What was their medical advice?
There are multiple alleles that mutations can occur in. Up to 85 percent was the diagnosis I was given. The lowest was 50 percent, so there was a one in two chance that I could develop breast cancer, and up to 85 percent. Living with that risk level is a very difficult thing.
If you have a genetic marker that predicts breast cancer, you can have regular screenings. Things like MRIs and needle biopsies can be done every six months to monitor for breast cancer. [My sister and I] decided we didn’t want to worry about doing screenings for the rest of our lives. So we both decided to get preventative mastectomies with reconstruction.
My family had discussions about it and it came down to a very personal decision of combining all of my personal resources, and looking at the risk; looking at before and after pictures of women who had mastectomies and reconstruction, and trying to figure out what was best for me. It’s a very personal decision, and you have to look at all of your options and decide what is the best way to deal with your risk level.
Were doctors hesitant about a double mastectomy for someone your age?
There was discussion about how young I was. The doctors were concerned that I didn’t need to do surgery at that young of a point in my life. But I told them that this is what I wanted to do 100 percent, regardless of my age. The doctors supported me after that, and agreed that the longer you wait, the higher your risk level.
What are your risks of developing breast cancer now, after the surgery?
Under 5 percent, which is lower than the general population for developing breast cancer.
Angelina Jolie wrote an op-ed in The New York Times about her decision to have a double mastectomy in response to testing positive for the BRCA1 gene. What was your initial reaction to Jolie’s news?
I was relieved to see someone who is known for being a powerful, successful, beautiful woman talk about her experience and to say, ‘I’m not less of a woman for doing this and I’m being proactive about my health.’ I was pleased to see someone talk openly about the issue.
Will you be having any other preventative operations due to testing positive for the BRCA2 gene?
This was the big thing prior to having children. What they recommend is, following children, you have a hysterectomy to reduce your risk of having ovarian cancer. It’s absolutely something I will have to consider as I get older, and after having children will consider having done.
Do you or your sister have any regrets about your decision to opt for surgery?
Absolutely not. We both have great support from our friends and family. We both agree that having that weight off our minds and to not have to worry about breast cancer on a daily basis and having screenings is well worth it. It’s well worth the pain and discomfort of the initial surgery that we don’t have to worry about that in the future.
Dr. Song at the University of Chicago was a fantastic plastic surgeon. It’s been 100 percent worth it to have not only reassurance that I won’t have breast cancer, but it is great cosmetically as well. The results are better than I expected; physically and emotionally, it’s been very much worth it.
Would you recommend getting the preventative procedure for someone in your position who tests positive for the BRCA1 gene?
I would certainly recommend considering it. It’s a very personal decision and you have to do research and see what’s the best decision for you. If someone wants to move on with their lives and not worry about the risk of breast cancer, it’s certainly a good option.