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Lizzie Stark’s ‘Real Steps to Survival’

Courtesy of J.R. Blackwell

In 2009, while still in her 20s, Lizzie Stark — a carrier of a BRCA1 mutation which increases the risk of breast or ovarian cancer — decided to have a prophylactic double mastectomy. Today, Stark is a healthy 33-year-old writer and recently published her memoir “Pandora’s DNA” which chronicles the history of breast surgery, the BRCA gene and the humor with which she dealt with the situation, including holding a “goodbye to boobs” party before her operation.

The Forward’s Seth Berkman spoke with Stark about life after her double mastectomy, her views as a non-Jew on the debate on whether all Ashkenazi women should get tested for the BRCA gene, and the effect of Angelina Jolie’s public announcement of her preventive double mastectomy.

Seth Berkman: What were the difficulties of writing a personal book also heavily based on science and medicine?

Lizzle Stark: I’m not a scientist. In that way it was very much like the live action role-playing book. You come in, and at first there’s a lot of unfamiliar jargon, buzzwords, confusing acronyms. The memoir angle really presented challenges — I was writing about some of the most painful episodes of my family history and also of my own personal history. I cried almost every day. Psychologically, it felt like being back in the shoes I was in getting ready to have this mastectomy.

Is there adequate awareness of BRCA testing? Did Angelina Jolie’s story help?

I think Angelina Jolie dramatically raised awareness of BRCA and the BRCA test. I spoke to the president elect of the National Society of Genetic Counselors [Joy Larsen Haidle], and she told me that there had suddenly been a “Jolie bounce.” At that time, it was mostly anecdotal information, an increase of women calling genetic counseling centers to ask about the gene.

That said, I don’t think awareness is where it should be. Primarily because I don’t think people understand the implications of having a genetic mutation, and I include doctors in that as well. I also think the way Angelina Jolie’s mastectomy was sensationalized by the media did a huge disservice to the intelligence of women and the right of women to make the decisions they feel are best for their medical care. Articles with headlines like, “Will Angelina Jolie Cause More Women To Have Unnecessary Mastectomies?” — I think that’s a terrible way to frame the discourse. Many of those articles conflated two different concepts of preventative mastectomy. What the science shows is that for women with a BRCA mutation that’s harmful, whether you have cancer or you don’t have cancer, double mastectomy is always a reasonable choice.

What are some of the most interesting things you found by researching the history of breast surgery?

The most death metal thing I’ve ever read is Frances Burney’s 1811 account of her mastectomy. Franny Burney was a novelist and a well-to-do Englishwoman living in France, and she actually had Napoleon’s surgeon and he discovered this lump in her breast. Let’s just say her anesthesia was a plain white handkerchief over her face, not soaked in ether or anything, and she could see the surgeon sawing off her breast through it. She was awake for most of it.

Post-surgery, was it difficult to look in the mirror and see a body that looked different?

It’s a major surgery. It was very surprising to suddenly be sleeping so much, and the loss of physical strength. After four or five months you’re like, okay, I had surgery, but I should be fine now. But I wasn’t.

The new body stuff, it just sort of took a long time to come to grips with. I actually think that one thing that helps is how the human body works; when you wake up you’re all swollen and bruised, and then slowly over time you go from being like ”Franken-boobs” — basically you’ve got tubes coming out of your chest, and it’s all black and stuff like that — to being normal flesh-colored. That makes you feel like you’re improving every day. I would say in general it was quietly unsettling.

What were conversations like with your partner and parents in terms of having children?

I know they would like grandchildren, but they don’t talk about it too much, because they don’t want to be pushy. They want it to be my decision. With my husband, it meant that we were talking about having children years before we ordinarily would have. For us, ultimately we decided that we weren’t ready to have a baby. So for me, one of the first things that I had to give up was the concept of breastfeeding children. I still wonder whether having a kid with a BRCA mutation is the legit thing to do. I really wouldn’t wish for my child to have the mutation, but if he or she does, it’s not the worst thing in the world.

You made a LARP-BRCA game. What was the impetus behind that? (Stark’s first book explored the world of LARPing — live action role-playing.)

Basically I think a lot of popular narratives about BRCA deny the impact of watching family members suffer, in a way that figures into your decision-making. For me, going in for a mammogram is not a trip to a dentist, it’s a horrific ordeal. If I didn’t have so much cancer in my family tree, it’s interesting to think about would I have had the mastectomy. That’s one of the strengths of role-playing games as a medium. I wanted to put other people in my shoes and see what they would choose and why, and feel how agonizing it is to make decisions when you’re filled with uncertainty, when it’s not clear what the right decision is.

Should all Ashkenazi women get tested? Are people still finding their way around the issue?

The gene is no longer necessarily a predictor of getting cancer; it’s a predictor of having to do something really, really crappy to prevent getting cancer. If you’re playing the numbers, the numbers look better when you do the surgery. That said, I think people have a right to know if they want to know, but I also think people have a right not to know. I kind of pooh-poohed the psychological ramifications of getting a genetic test, but they’re considerable. That has impacted me in a long-term way I would have never anticipated when I got the test, and has not just impacted me, but my mother. My mother said the day I got my test results was the worst day of her life.

I feel no one should be forced to take the test, no one should be forced to disclose. At the same time, there are some real steps to survival that seem to be part of the option to get the test.

I’m not an Ashkenazi Jew, but if I were, given the prevalence in that population, I would seriously consider testing. But I’m also the kind of person who would want to know. Not everybody is the kind of person who would want to know.

This article has been edited for style and length.

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