The FORCE Blog
Our blog features information and personal perspectives on topics of interest to the hereditary cancer community.

Stay up to date on research and information

Sign Up for FORCE Newsletters
Education > Our Blog > A Fertility Journey Through the Eyes of a Young Previvor

Your information is used for the sole purpose of sending information about hereditary cancer and updates on FORCE programs and campaigns. To stop receiving these updates, click unsubscribe at the bottom of any email. If you need additional support, or have any questions, please contact [email protected].

A Fertility Journey Through the Eyes of a Young Previvor

February 08, 2022

A Fertility Journey Through the Eyes of a Young Previvor

by Andrea Walens

At the age of 22, I heard the words, “You have your mother’s BRCA1 mutation.” My world flipped upside down that day. I was referred to a slew of doctors, and almost all of them asked me what my goals were for family planning considering the screening and surgery decisions I would have to make. At the time, I had no clear picture of being settled and I wasn’t in a relationship in which I felt comfortable bringing kids into my life. In addition, I couldn’t comprehend having a child naturally, knowing that there was a 50/50 chance that they would inherit my BRCA mutation. For many years, I lost the dream of one day being a mother—it seemed impossible. 

About five years later, I was in a long-term, committed relationship and pursuing therapy at the Duke Cancer Center. Upon hearing that I told myself I could never have children, my therapist encouraged me to reach out to a provider at the Duke Fertility Center to discuss my options. I was extremely nervous about this appointment, fearing that my thoughts would be confirmed: I would never have a chance at motherhood.

The outcome was opposite to what I expected. The reproductive endocrinologist confirmed that no matter the circumstance, I would be able to bring a child into this world knowing that they would not carry my mutation. 

The process for doing this is called pre-implantation genetic diagnosis (PGD). A reproductive endocrinologist would retrieve my eggs and my partner would donate a sperm sample, which they would then use to fertilize my eggs. Once viable embryos formed from those fertilized eggs, they would take a few cells and send them for genetic testing to see if they carried my mutation. I could still have a viable pregnancy even if I decided to have my ovaries removed before having a child. I was shocked and so excited that motherhood could be an option for me.

At the time, however, I was not ready to pursue this. My partner and I were not yet married and I wanted to pursue frozen embryos versus frozen eggs, as my reproductive endocrinologist said this would be the most successful option. The other reason was that this process is insanely expensive. I was reassured that they had a financial counselor who could help me with medical loan programs and pharmacy programs to help afford the medication I would need to trigger the release of hormones that would stimulate egg production and maturation. 

My husband and I were married in December 2019. Then, in March 2020, the whole world fell apart. It felt like this dream was never going to happen for me. I was in the process of planning my risk-reducing bilateral mastectomy with the hope of doing a round of IVF treatments afterward. I heard horror stories of surgeries and embryo transfers being delayed because of COVID precautions. It took several months for me to finally book my mastectomy and find a provider for IVF treatments.

I had my mastectomy in August 2020, and the following March we finally started the IVF process. The experience was tougher than I had anticipated. The shots those first few days were a little painful, but not terrible. My husband did them for me. After that, they realized that I was a strong responder - I had many follicles, and I was potentially at risk for ovarian hyperstimulation syndrome, an exaggerated response some women have from the process. My treatment was modified to make sure I would still have a successful cycle. Eventually, I was ready to trigger. I had a lot of pain, discomfort and nausea. I was also bloated and had a hard time eating. I was so ready for this to be done. 

My egg retrieval was fairly easy. I was under anesthesia for about an hour and then went home. The first day or two I had a decent amount of pain, but it was bearable. By day 3, I was feeling normal, and by day 5 my bloating was gone. It felt great to be done. Twenty-seven of my eggs were retrieved: 13 were fertilized and eight were healthy enough to biopsy and send off for genetic sequencing. We were excited to learn that two of those embryos have a normal number of chromosomes and are BRCA1-negative. We don't plan to implant either of these embryos for about three years when I’m 33.

I feel so relieved that I went through this process and we now have two chances at becoming a full family. I was very fortunate to have the financial and medical support that I had in this process. I also found social support through the FORCE message boards, website, and a Facebook group for BRCA mutation carriers going through IVF with PGD. This process has many ups and downs, but I wouldn’t be where I am today without the support network I built. If you’re considering going through IVF with PGD, I encourage you to reach out to your support systems and build a network that will carry you through this journey.

Posted in: Voices , Fertility And Parenting
Tags: BRCA , Previvor , Family Story

No Comments

Leave a Reply