By Conny Reichardt
I wanted to share my story of being a previvor. A previvor is someone who has taken preventative measures to decrease their chances of getting a cancer they may be predisposed to. I have been lucky enough to know I have a BRCA1 genetic mutation so that I can make choices that will be a win not only for me but my family and generations to come.
I do not have a strong family history of breast cancer; the only person is my paternal grandmother, so it was not as much of a concern as if it had been on my maternal side. So, I did as I should and went to the doctor for my annual visit every year. At 39, I did my first baseline mammogram. From there I went yearly. I did get called back in once and had to have an ultrasound. I just had dense tissue, nothing to be concerned about.
I’ll share a little more background on my health history, which has also made me proactive in my health. I got married at 26 and of course was ready to start a family as soon as my husband was. Unfortunately, it was not that easy. After many tests and being referred by my great OBGYN to an amazing fertility specialist, I was diagnosed with polycystic ovary syndrome (PCOS). After trying many different options to get pregnant, we knew the best option for me was in vitro fertilization (IVF) with intracytoplasmic sperm injection (ICSI). Did I get lucky; I got pregnant with twins on my first try!
I did manage to get pregnant without fertility treatments about three years later, only to lose that baby around 12 weeks. After that, I had to have precancerous cervical cells removed that were found during a routine Pap smear. We were told that in order to have another viable pregnancy, I would need to go through the whole IVF process again. We decided life was good as a family of four, however that is not what was in the cards for us; we were meant to be a family of five! I managed to get pregnant again without fertility treatments.
After putting extra hormones in my body during the IVF process, I knew that I would always be at a higher risk for some cancers. Little did I know, that is not what was putting me at a higher risk for breast cancer and ovarian cancer.
A few years ago for Christmas, we were given an ancestry DNA test which included a health option that gives you some insight into your genetic data. I got my results back and learned a lot of interesting things about my ancestry that I was not previously aware of. I have no Native American in me, I am 25% Ashkenazi Jewish, I have an aversion to cilantro (YES, I hate it!) and my husband and kids are more Polish than me! I also learned I carry the BRCA1 gene mutation. I had heard of it, I knew it put me at a higher risk of breast cancer, but I had no idea how it would impact my life!
I already had an appointment scheduled with my OBGYN, so I decided I would bring my test results and share them with him. Well, he had a different reaction than I ever expected. The first thing out of his mouth was, “Let’s get you scheduled for a hysterectomy with oophorectomy.” This is the removal of tubes and ovaries—or, as we like to say in layman’s terms, a total hysterectomy. I was 50, and I was not having any more kids, so I agreed. Because the BRCA1 mutation puts you at a high risk of ovarian cancer (which is very hard to monitor), and after knowing people that have had reproductive organ cancers, I was okay going ahead with the procedure. My OBGYN also had me see a breast specialist right away.
The breast center I went to wanted to confirm with a genetic counselor that I indeed had the BRCA1 gene mutation, as the home genetic testing kits may not always be accurate. And it was my lucky day, I still came back positive on the tests ordered by my genetic counselor. The counselor went over all of my risks and gave me a lot of information. I then met with the breast specialist, who was an advocate for a double mastectomy for me. I had just scheduled my hysterectomy; can we deal with one thing at a time!? My doctor was very honest and helpful. Together we decided to alternate between breast MRIs and 3D mammograms every six months. Thankfully, each test that followed came back clear, which was a relief knowing I am considered high risk.
I got my initial BRCA results back in February 2023, went to my OBGYN in March, scheduled my hysterectomy for June, and was set on a plan for monitoring for breast cancer. After my second MRI, it was time for my annual visit with the breast specialist. After meeting with her and talking with my husband, we decided that a double mastectomy with a DIEP flap reconstruction was the best choice for me and our family. In late August after sending two kids to college out of state and the youngest starting high school, I was scheduled for another surgery.
As I write this, I am still recovering from my double mastectomy with DIEP flap reconstruction. I do not know where I inherited the gene mutation, although there is a much higher percentage of those that have it in the Ashkenazi heritage than others, it really doesn’t matter. I know I have it, and I have to be proactive to prevent cancers. There are other cancers that can be at a higher risk with the BRCA1 gene mutation, but I now have much lower risk for the two that are most pronounced (breast and ovarian cancers). I will still meet with my OBGYN and breast specialist once a year for checkups.
If my story does nothing more for you other than make sure you have annual checkups, then I have done what I have set out to do. I could look at all of this and think, “I got dealt a bad hand of cards,” but I would rather look at it like this is the path I was given. We don’t always like the path chosen for us, but hopefully we learn from it and can teach others.
Más información:
En el Podcast, Conversaciones sobre el cáncer de mama:
Mastectomía profiláctica y mutación BRCA
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Sobrevivir al cáncer de mama.org Recursos y apoyo: