Today is my 10 year wedding anniversary. My husband and I started dating not long after my genetic test results came in. We both remember quite distinctly, that I shared very early on what it meant to carry a BRCA mutation. BRCA was still relatively unknown in 2005 when we met, so I had to explain in detail how it would effect many important future decisions regarding my health and family. Apparently I was very clear in stating that if he’s not along for the ride, then he should get out while he can. I didn’t really say it in those words of course. I’m sure my approach was a bit more soft, but it was very fresh in my mind. The test results were real and solidified years of fear on one piece of paper that my cancer risk was very high. I felt it was extremely important to explain the seriousness of what having this mutation meant. If he couldn’t handle it at that point, then he certainly wouldn’t be able to handle it when I got a double mastectomy, or god forbid, cancer.
I was very lucky to find him. Not only was he incredibly supportive early on, but he’s stuck with me through it all! From day 1, BRCA has been a large part of our lives. I can imagine that it has been quite a roller coaster for him! From initially learning what BRCA meant, to supporting me through an NIH research study (I’ll get more into that in future posts), to understanding “scananxiety” (as Nalie Agustin puts it), to being diagnosed with stage 2 ductal carcinoma 6 months after having our first son, then cancer treatment and mastectomy surgeries…. Did I list enough here ladies?!!!
I still struggle to this day with various elements directly related to my BRCA journey. Screenings can feel intrusive, overwhelming, robotic. How do you undress in front of doctors, open yourself up to poking and prodding, but then allow your body to feel loved and romanticized by your partner? Our breasts are “ground zero” in the fight or race against the BRCA mutation. Can you allow your partner to lovingly embrace that part of your body when there’s so many complex emotions surrounding them? These were some of my challenges and after mastectomy surgery, any physical sensation, sexual pleasure connected to that part of my body is gone.
For many years, I separated myself from that part of my body. It was the only way I knew how to cope with all the doctor visits and complexity of emotions surrounding them. It has been over a year now since my mastectomy surgery, and almost a year since my second reconstruction, or as we “Breasties” say, swap surgery, and I have yet to truly connect with my new breasts. Someone can literally stab me in the chest and I would not feel a thing. Mirroring scars on each side fade over time, but they’re still scars. Their shape and feel will never be as they once were no matter how great the plastic surgeon. To have a partner who understands and fully provides unyielding love & support through all of this craziness is simply priceless!!
For those going through preventative mastectomies at a young age, perhaps you are nervous about how this will impact future relationships, disclosing the path you have chosen and the physical changes made to your body? My sister, who also tested positive for BRCA1 at 19, decided to pursue a preventative mastectomy at 30 after I was diagnosed with stage 2 ductal carcinoma at 36. She was engaged at the time and like me, found a great deal of support and understanding from her then future husband. But I understand that not all of us are as fortunate. For those who are engaged or married, have your significant others been understanding of your BRCA journeys? I encourage you to share any advice and helpful tips/guidance… and we have not even touched the subject of our ovaries yet!!
More to come my fellow BRCA’nites…