IVF to Prevent Passing on BRCA – The Other Side of the Story

IVF to Prevent Passing on BRCA – The Other Side of the Story

I wished this story had been out there on two occasions: (1) before I began my in vitro fertilization (“IVF”) journey and (2) when (it felt like) every aspect of my world quietly fell apart 10 months later, overnight.

This article is my story in a nutshell. I initially wanted to be able to write an inspirational “how to” story to empower others with BRCA mutations to use IVF to prevent passing on BRCA to their future children.  As we all learn at some point in our lives, man plans and God laughs. I do not have my inspirational story to share at this time, but this story needs to be told to manage expectations and reassure women out there who have had similar walls come crashing down that they are not alone.

BRCA, now commonly referred to as the “Angelina Jolie gene” and prevalent in Ashkenazi Jews, can be passed down to both males and females and if inherited, BRCA results in significantly increased cancer risks in both sexes. BRCA is a dominant gene meaning that there is a 50% chance that BRCA will be inherited by a child of a BRCA positive parent.  The lifetime ovarian cancer risk is about 39–46% for BRCA1 carriers and 10–28% for BRCA2 carriers.  The lifetime breast cancer risk is approximately 72% for BRCA1 and 69% for BRCA2 carriers.  In addition to having an increased risk at contracting ovarian and breast cancer, BRCA has been linked to a 4-8% increase risk for contracting pancreatic cancer.

I am your classic “type A” neurotic and proactive control freak. I decided to get tested for BRCA at age 22 because numerous members of my family have battled breast cancer and at least one close family member had previously tested positive for BRCA.  After I tested positive for BRCA, I was drawn to the IVF idea because I was thrilled there was something I could do to shield my offspring from the mutation. I always idealized the sacred role of being a parent to mean protecting your children from known dangers and doing whatever it took (within reason) to keep them safe.  There are various articles circulating the internet that share happy success stories of mothers preventing passing on their BRCA mutations that gave me a tremendous amount of hope. After numerous women in my family had battled breast cancer, there was finally something I could do to stop this gene from wreaking havoc on my offspring.  None of those articles that inspired me described those mothers’ IVF journeys. They just reported the miraculous end results and had photos of smiling new moms holding their healthy BRCA mutation-free babies. I didn’t find the other side of the story, the side where things don’t go as planned, because no one wants to tell that story. It is not all sunshine and roses, and sometimes you just walk away with a significantly depleted bank account, your bruised pin cushion of a body, a broken heart, and a different perspective.    

When I began my IVF journey, I did not fully comprehend the magnitude of what I was signing up for and I wished some of those happy success stories from moms who didn’t pass on their BRCA gene elaborated on their IVF journey.  The IVF process is grueling – mentally, physically, and financially. Women who have been through IVF are truly Wonderwomen – whether or not they walked away with a baby, whatever their reasons were for enduring IVF, they are tough as nails and I have the utmost respect for them. IVF to prevent passing on BRCA involves undergoing a full and often painful infertility work up which in itself can take months, driving to a clinic almost every other day for bloodwork and invasive ultrasounds, taking time off of work for various procedures and time sensitive appointments, building a genetic “probe” that is a replica of your exact BRCA mutation with a genetics company, injecting yourself multiple times a day to stimulate your ovaries to grow eggs, having your eggs taken out, praying that some of those eggs form into embryos, anxiously waiting to see which of the embryos survive, taking biopsies of the embryos that make it, sending those biopsies in for genetic testing to see if they have BRCA, prepping your body for a frozen embryo transfer with more daily injections and patches, and then finally, transferring a BRCA mutation-free embryo into your uterus. If the embryo implants, the estrogen patches and daily progesterone intramuscular injections in the rear end continue for the first 10 to 12 weeks of pregnancy (depending on your IVF clinic’s protocol).

Time commitments and emotions aside, the steep expenses associated with the IVF route add up quickly (unless you have an exceptionally incredible insurance plan).  In Florida, genetic testing of embryos to ensure they are chromosomally normal and do not have a BRCA mutation is close to $10,000. In Florida, each time you have your eggs taken out, it can cost close to $10,000, and each time you implant an embryo, it can cost close to $4,000.  Additionally, the IVF medications used to stimulate your ovaries can cost over $5,000 each time you have an egg retrieval.

I had my eggs taken out multiple times because half of my eggs were statistically expected to have the BRCA mutation.  Leading up to each egg retrieval, I injected myself with hormones to make my ovaries grow from the size of chestnuts to grapefruits. To say that it was physically uncomfortable would be an understatement. I kept reminding myself of the end result: protecting my future child. I overcame my fear of needles and I constantly had vials, needles, and alcohol swabs tucked away in my work purse or in a refrigerated lunch box. At the risk of sounding too much like a Dr. Seuss “Green Eggs and Ham” rhyme, I remember stealthily giving myself injections at my desk at work, at friends’ birthday parties, while in the car, during a Passover seder, and even on a plane. I scheduled life around my IVF treatments for almost 9 months.  

And finally, it worked. We successfully implanted a BRCA mutation-free chromosomally normal embryo in me and I was over-the-moon ecstatic.  Every time I was nauseous or my clothes didn’t fit right, I was grateful. Every night, I tolerated a progesterone injection from an inch and a half intermuscular needle to help my body hold the IVF pregnancy. The entire pregnancy, I was grateful.  Unfortunately, after we “graduated” from the IVF clinic with normal blood levels and a strong heartbeat, I lost the baby and found myself back at square one.

People preparing to embark on this journey need to know this side of the story.  Science is absolutely incredible, but sometimes these things “just happen.” I thought the battle was over and it was going to be smooth sailing once I found out I was pregnant –  we finally found a chromosomally normal embryo without a BRCA mutation and he successfully implanted. It didn’t cross my mind that IVF was not the only battle I would be facing with this pregnancy. I felt blindsided when my OBGYN told me that the baby’s heartbeat stopped the day before my appointment. Truth be told, one in four women miscarry. Even if the baby is chromosomally normal, even if you did everything “right,” it does just happen and it’s awful. People who have not been through similar situations likely will not understand, and that is why this article needs to be out there. For those BRCA positive women considering this route, or for those individuals having experienced this unfortunate part of the general parenthood journey, you are not alone.

My advice? Find your tribe and let them be there with you through the good, the bad, and the in between.  Whether it’s friends, family, a trusted therapist, or a support group of strangers, find your support tribe on this journey.  Through the darkness, make a conscious effort to spend time with the people who put a smile on your face. Recognize that it is “ok” not to “be ok.”  Some people you were once close to might not have the capacity to be there the way you might need them to be – steer clear of those who suggest you wanted a “designer baby”, refer to your loss as “just” a miscarriage, ramble that it was “God’s will”, hint that you were in any way at fault for your baby’s heartbeat stopping, or remind you that you’re “lucky” since your baby “just wasn’t healthy” or “just wasn’t meant to be.” This is your journey, not theirs, and ultimately it is your decision who you include in your world when navigating this delicate part of your life.

Sharsheret’s Peer Support Network connects women newly diagnosed with, or at high risk of developing breast cancer or ovarian cancer one-on-one with others who share similar diagnoses and experiences.  Women can choose to become a Sharsheret “Link” (a peer supporter) and confidentially connect with and offer support to other women across the country going through similar cancer-related battles. Additionally, there are tons of welcoming and informative Facebook groups for women with BRCA mutations and women undergoing IVF treatment that are hidden as private (i.e., your conversations are not visible to the world and are only seen by people in the group).  In those groups, members can ask questions ranging from doctor selection to emotional coping mechanisms, and they can read cutting-edge research articles and new photos of members’ IVF journeys. Whether it’s friends, family, Sharsheret links, a trusted therapist, or support group strangers, find them and then most importantly, let them be there for you. I hope to have that inspirational story to share one day, but in the interim, this part of the journey is worth sharing too because I wish it had been out there before I began my IVF journey and when I felt like my world came crashing down.  This one goes out to all individuals out there battling similar demons (miscarriages, stillbirths, infertility, infant loss, and all other battles related to the parenthood journey) — you are not alone and eventually, with time, it gets better.