When Angelina Jolie announced that she had a BRCA1 mutation in a New York Times op-ed, I didn’t know that one day I would be able to relate. Five years after her op-ed, I found out that I also had a BRCA1 mutation, which means that I have a higher risk of developing certain kinds of cancer. It was a huge shock. I took the genetic test on a lark, only because I had heard that people with Ashkenazi Jewish heritage have a one in 40 chance of having a BRCA mutation. My grandmother had also died of ovarian cancer, which is strongly correlated with the BRCA1 gene.
Researchers now call this the “Angelina Jolie effect,” which led to a huge uptick in women getting genetic tests. And while I’m not happy to be part of this club, I’m glad to have this knowledge. It helped me understand that I’m a cancer “previvor,” as opposed to a survivor.
A previvor is essentially someone who has a genetic predisposition to certain cancers, but who may or may not currently have cancer. BRCA1 and BRCA2 are some of the most well-known cancer mutations, but others include APC, ATM, CHEK2, PALB2 and more.
Being a previvor often means visiting the doctor a lot more than normal, especially if you’re opting for screening over preventative surgeries. As a BRCA1 previvor, my risk for breast, ovarian, pancreatic, peritoneal, fallopian tube and endometrial cancer is higher than normal. Men with a BRCA1 mutation have a higher chance of prostate and breast cancer.
What it means to be a previvor
Even before I found out about my BRCA1 status, I knew I would have the risk-reducing surgeries if it were ever an issue for me. It was a decision based on emotion, logic and, most surprisingly, finances.
I live with underlying anxiety about the future already, and knowing that I had a predisposition to cancer would have only increased my health anxiety.
Zina Kumok in hospital (Photo courtesy of the author)I also quickly understood that the facts didn’t lie: my genetic counselor confirmed that I had a 81% lifetime chance of being diagnosed with breast cancer and a 54% lifetime chance of being diagnosed with ovarian cancer. If Vegas ever gave me those odds, I’d bet the house.
I remember meeting with one of my specialists early on in the process. One thing she told me has stuck in my mind for six years: “Once you get cancer, everything is different.”
What she meant was people who have cancer will always be at risk of it coming back, even if they’re in remission. There’s always a chance that cancer will return, spread and get worse. I didn’t want to wait until cancer became part of my reality, not just a fear.
"Once you get cancer, everything is different."
The third reason was money. I’ve been self-employed since 2015 and don’t see that stopping any time soon. And if you’ve ever had to buy health insurance through the Health Insurance Marketplace, you know it’s not cheap.
I figured that getting cancer would be expensive, especially since I don’t have access to employer-sponsored health insurance. Most people don't know this, but about 25% of cancer patients go bankrupt or lose their home, while 60% evaporate their savings. This is often due to a combination of being unable to work while accruing thousands or even tens of thousands in medical bills. Experimental or new treatments are often not covered by insurance, forcing patients to either pay out of pocket — or go without.
I didn’t want to lose my savings and everything I’d worked so hard for, especially when I knew that cancer was likely in my future. Being a previvor means I have the ability to make proactive choices. I can’t reduce all my cancer risk through surgery. For example, BRCA1 carriers have a higher risk of pancreatic and peritoneal cancer, neither of which have a reliable screening tool.
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Some counselors have said there may be a link between melanoma and BRCA mutations, but the jury’s still out. Either way, I get a skin cancer check every year.
I still meet with my gynecological oncologist and get my CA-125 levels tested and a vaginal ultrasound every six months. We also meet to discuss the latest research and if any new recommendations have come out for others with my mutation. Being a previvor is bittersweet in many cases.
“I feel so incredibly lucky to be a previvor,” Paige More, a previvor and founder of the support group The Breasties, told Salon. “It’s such a privilege to undergo genetic testing and have the knowledge and make preventive decisions, but being a previvor has its own set of challenges and intricacies.”
"I feel so incredibly lucky to be a previvor."
Some people try to discount what it means to be a previvor, especially once you’ve had some of the preventive surgeries. They say things like, “You’ve had surgery, so you don’t have to worry about cancer anymore.” But that’s not true. There are still plenty of cancers that I can’t prevent with surgery - so my risk never goes away. Speaking with experience as someone who has had most of my preventative surgeries, a lot of worry and anxiety still remains.
However, we’re also aware that being a previvor is a different reality than what cancer survivors face. Living with the reality of cancer is different from living with the threat of cancer — and no previvor tries to make that comparison.
“I don't think that the experience of a previvor is ever meant to be compared to a survivor or someone living with metastatic breast cancer,” More said. “They live a reality every day that we don’t, and it’s just not meant to be compared. It's a completely different experience.”
If you have cancer in your family, I recommend talking to your doctor about getting tested. If they don’t agree (like mine originally didn’t), I would advise getting a second opinion. My first primary care doctor said I didn’t have enough of a family history to need genetic testing, but I found a way around it.
If you do test positive for a mutation, I would also recommend joining Facing Our Risk of Cancer Empowered (FORCE), a support group I joined and now volunteer for. You won’t realize how much you need a support group until later.
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