My Sharsheret Campus Connection: AEPhi and my Previvor Journey

My Sharsheret Campus Connection: AEPhi and my Previvor Journey

I am a BRCA gene mutation carrier, which means that I am at a much higher risk for developing breast cancer and ovarian cancer, among other cancers. In the past few years, I had two prophylactic (preventative) surgeries that should significantly reduce the risk.

I went to college at American University in DC and at AU I was in the AEPhi sorority. One of the philanthropies that AEPhi supported was Sharsheret. To be honest, I knew that they supported people with cancer, but didn’t really know much else – and definitely didn’t know that I would one day get to know the organization on a much more personal level.

Fast forward to a few years after college, I got married. Before trying to have kids, my husband and I did basic genetic testing through my OBGYN to see if either of us had any recessive gene mutations that would possibly prevent a healthy pregnancy. As it turned out, we were found to both be carriers of a random disease that neither of us had ever heard of. We explored options and learned about a process called PGD – preimplantation genetic diagnosis – which is used along with IVF – in vitro fertilization – where they can test the DNA of an embryo before deciding to use the embryo to grow a child.

It was at that time that I had a tough discussion with my parents. I knew that my grandma on my dad’s side had a BRCA gene mutation, and it was time to learn if my dad had inherited it and if so, if I also had. It turned out that my dad did have it and so did I. It is important to note that men and women can both be carriers of BRCA gene mutations, with each having a 50% chance of passing it on to the next generation, and are at increased risk for breast, male breast, melanoma, ovarian, pancreatic, and prostate cancers. 1 in 40 people in the Ashkenazi Jewish population has a BRCA mutation, versus only 1 in 400 in the general population.

After undergoing a number of screening tests, like a breast MRI and pelvic ultrasound, we began the process of IVF with PGD, not only to screen the embryos for the original disease but also for the BRCA mutation. As you can imagine, my stress and anxiety levels were through the roof. I didn’t know a single person who had ever done this before. That was when I remembered Sharsheret from my AEPhi days. I called the organization and explained what I was going through, and how meaningful it would be to talk to someone who had experienced something even remotely similar.

Within a couple days, I was connected to a woman who had undergone something similar a few years before as part of their Peer Support Network “Link” program. Her reassurance made me feel more comfortable with my decision, and I was able to ask her more personal questions than I could ask my doctors. Fast forward a lot of years – I now have two young children who were born without the BRCA mutation or the original disease that prompted it all.

Through the years, I continued screening exams of my breasts and ovaries multiple times per year. Once my husband and I decided two kids was enough, I knew it was time to take more significant action to reduce my risk of getting cancer. In February 2020 (talk about good timing!) I had a salpingectomy, which means they removed my fallopian tubes. This was an experimental surgery of sorts – it is a common procedure, but novel in the possibility that it could decrease my risk of ovarian cancer. While clinical research is ongoing and the results still unknown, I am hopeful that this low-risk surgery will allow me to delay having my ovaries removed.

The next thing on my list was to have a prophylactic (preventative) – mastectomy. I had always planned to do it when I was older, but in the summer of 2021, I hit a point where I decided I needed to have the surgery and all but eliminate my risk of breast cancer. As I looked into the options for the surgery and reconstruction, I remembered again about Sharsheret’s Link program and reached out to the organization. Again, within a couple days, I was paired with a woman who had undergone the surgery I was planning to do. She helped make it less theoretical and technical, and helped me consider the emotional aspects and the impact on my family.

Between then and when I actually had the surgery in November of 2021, I participated in a number of virtual programs with Sharsheret, including a book talk with an author who had a prophylactic mastectomy and a few art classes to de-stress. I also signed my dad up for a webinar they held about men and BRCA mutations. And to top off all the amazing things that Sharsheret does, right before my surgery they sent my kids a “Busy Box” of toys that I could give them as needed for distractions, and sent me a beautiful pillow to aid in my recovery.

The surgery was significant – it took about 10 hours – and recovery was long. But now, post-surgery, my risk of breast cancer has gone from around 70% to about 2%. And in the last 2 years, I have already been able to return the favor by being a Link to 6 women, speaking at a University of Maryland Pink Shabbat, participating in a focus group about PGD, and sharing my story at a virtual Sharsheret Pink Day program!

All this goes to say – you never know what the future will look like for you or a friend or family member, so keep Sharsheret in mind as a resource. They have so many different ways to support individuals and their caregivers and family members.

I also want to urge you to talk to your family about their medical history if you are able – keeping in mind that men have a BRCA mutation at the same rate as women, and can also get breast cancer. Find out who in your family has had cancer or other diseases, what types, and at what ages. It can be a scary topic, but there is so much power in knowing – even if it means you choose to forgo any testing but decide to do additional screening. Sharsheret has resources on how to have these conversations, and what to do with the information that you learn.