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Preventing cancer can be a family affair: Ali’s story


By Ali Rogin

CW: Infertility

Between my parents, my daughter and me, you could say preventing cancer is a family affair.

It started with my dad, Max. When I was a child, he found out he was a carrier of the BRCA1 genetic mutation, which increases the risk for a number of cancers, but is best known for the high increase in risk it causes for breast and ovarian cancers. It’s important to keep in mind that men can also be carriers of the gene, and it is also linked to cancers that affect men, including prostate and pancreatic. In fact, my dad was diagnosed with prostate cancer a few years after I tested positive for the mutation. He has been cancer free for more than ten years.

The decision of when and how to tell me that I might have inherited the mutation weighed heavily on my mom Rebecca and him. They decided to do so when I was a junior in college. Like my parents, I like taking action as soon as possible to eliminate uncertainty. (I have a feeling most of the cancer prevention community is like this, too.) So I saw a genetic counselor and got tested right away. It wasn’t much of a surprise when I found out that I, too, carried the BRCA1 mutation.

It wasn’t long before I decided to have a prophylactic double mastectomy with reconstructive surgery, which reduced my high risk of breast cancer to below the average woman. Yes, it was irreversible surgery, and I was a very young woman just about to graduate college. But it’s about as preventive a measure as you can take to reduce your risk of cancer. This choice may not be for everyone, but it remains one of the best decisions of my life.

Unfortunately, there is no routine screening for ovarian cancer, so I am planning to have my ovaries removed as soon as I’m done having kids, which will put me into immediate menopause.

And, about the kid thing: Like I said, my mastectomy was one of the best decisions of my life. The other one was marrying my husband, Josh, and deciding to start a family with him. We tried to conceive for about a year on our own before pursuing in vitro fertilization (IVF). Infertility was our impetus for exploring that route, but a fantastic ancillary benefit was that we’d be able to test our embryos to see which carried the BRCA1 mutation and which did not.

I want to make it clear: the IVF process is painful, time-consuming, often prohibitively expensive and frequently soul-draining. It’s unfair that so many people yearning to be parents can’t afford it, and that it’s so often traumatic for those who can. But I am eternally grateful that the technology exists because it brought us to Anne.

She’s perfect, just like all babies. She’s named after one of her grandmothers and is the spitting image of her daddy, including his gorgeous bright blue eyes. But the most important piece of inheritance from me may be what I didn’t pass down to her: Whatever Anne faces in her life, she will not have to deal with the genetic predisposition to breast and ovarian cancers that her mom and so many other female relatives did. I thank my ancestors frequently for sending Anne to me, and for imbuing her with all the family attributes that I’m confident will reveal themselves throughout her life. But I’m just as thankful that I was able to prevent a high risk of cancer in my child before she was even born. That decision competes with marrying my husband and having my daughter, but it’s definitely up there among the best.  

 

October is Breast Cancer Awareness Month. To learn more about breast cancer, including BRCA1, BRCA2, PALB2 or other gene mutations that put you at increased risk for breast or ovarian cancers, visit preventcancer.org/breast.