Almost five years ago, when I was 29, I decided to undergo genetic testing to learn whether I had inherited a BRCA2 mutation. My mother is a two-time breast cancer survivor, and we had discovered that she had a BRCA2 mutation during my senior year of college. This meant that I had a fifty percent chance of also carrying the mutation — and sure enough, my tests came back positive. And now, I’m getting ready to have my ovaries removed when I’m 38.
Women who carry BRCA2 mutations have an elevated lifetime risk of developing breast and ovarian cancer. Doctors currently recommend that women who carry BRCA mutations undergo a oophorectomy, the surgical removal of the ovaries, around age thirty eight in order to eliminate the risk of developing ovarian cancer.
When I first learned about my diagnosis, I had just ended a long-term relationship. My oncologist gently suggested that I consider undergoing fertility preservation — aka, specifically, having my eggs frozen. She thought it would be the best option in case I were faced with a sudden cancer diagnosis that would require chemotherapy or another treatment that would eliminate my ability to have children. But I wasn’t so sure.
I had always assumed I would have children, but I had never made a real plan — or timeline — for when/how I wanted to have them. Plus, at the time of my diagnosis, I was pretty singularly focused on preparing for my preventive double mastectomy (which would lower my breast cancer risk down to less than five percent) so I told my doctor I would reevaluate when I was in a better mental space.
After my mastectomy in December 2014, I began to see an ob/gyn who specializes in treating patients with BRCA mutations. During our biannual appointments, she, too, would bring up the topic of egg-freezing. She explained that she had seen patients diagnosed with ovarian cancer who delayed treatment in order to undergo egg-freezing — and that the delay often resulted in incurable cancer.
Finally, in early 2016, I decided to at least explore the idea of freezing my eggs. I scheduled a visit with a fertility specialist at Weill Cornell in New York City.
When I went in for my appointment, the doctor gave me a basic overview of the egg-freezing process. Over a two-week period, I would come in for daily hormone injections which would cause me to produce somewhere between 18 and 20 eggs at one time. I would then come in for an extraction; then, the eggs would be frozen until I was ready to use them.
If I were willing to undergo two rounds of egg freezing (which would double the number of eggs available), the doctor explained, I could undergo a process known as preimplantation genetic diagnosis (PGD). PGD is a procedure — used before fertilized eggs are implanted — that would allow the doctors to test all of the embryos to see if they carried a BRCA mutation (and thus only implant the ones that tested negative). Essentially, I would be able to use science to avoid passing my mutation on to any future children.
The price tag for all of this? Somewhere between $13,000 to $15,000.00 per cycle — along with an annual storage fee of $1,000.00 until I actually used the eggs. Yep.
I left the office feeling glad that I had gotten the information — but with the conviction that egg-freezing was not for me. When I sat down to unpack why I had such a negative reaction to learning about the process, I initially thought I must have been simply turned off by the cost.
However, when I dug deeper, I realized that I was so turned off by egg-freezing because it felt like ceding control over yet another part of my life to BRCA. I had already had to make the difficult decision to remove my breasts, and I was balancing work with an ever-growing number of appointments with different specialists. I at least wanted my reproductive life to be free from medical intervention.
I was also troubled by the idea of undergoing PGD. Although I could see the obvious benefit in not passing on my mutation to my future children, I couldn’t help but feel like doing PGD would somehow be an admission that someone like me — BRCA mutation and all — shouldn’t exist. After all, if my mother would have had access to PGD, I wouldn’t be here.
It’s been almost three years since that appointment, and I don’t regret my decision to pass on egg-freezing. I’m 33 now, with about five years to go before I have my ovaries removed. And I’m comfortable and confident in the knowledge that whether I have children in those five years or not, it will be a choice that I made on my own terms.