This is part of an ongoing blog series featuring informational essays and personal stories from members of the Basser Young Leadership Council (YLC). This essay was written by Katrina Wells, a YLC member and a writer and editor for medical news publications.
From the time of diagnosis, most BRCA mutation carriers face questions about our breasts. What will surveillance appointments be like? Will I want to nurse my kids? When will I have a mastectomy? How can I even consider the idea of going through a mastectomy?
In the acronym – BRCA – we face it directly. BReast CAncer. But another, more difficult foe nags at the back of many of our minds. Yet, they don’t call it OVCA.
For me, the decision to have a mastectomy was a relatively easy one. Yes, I wavered on when to go through the surgery and took time to do research, as there are now so many options. But I did not question my ability to go through with it, my family’s ability to love me through it, or my identity with or without breasts. That was not something I dwelled on (though many rightly do).
Yet the other step I must take – the removal of my ovaries to prevent ovarian cancer – plagued me with doubts and fears.
Medical Recommendations
The recommendation for a woman like myself with a BRCA1 mutation is removal of the ovaries and fallopian tubes by ages 35 to 40. For a BRCA2 carrier, this is recommended by ages 40 to 45. If you have a family history of ovarian cancer, it’s important to discuss your own potential risk with your doctor. My gynecologic oncologist, Ashley Haggerty, MD, MSCE, said, “We strongly encourage all women to discuss with their physicians if they should have genetic testing based on their family history. If women are found to carry a genetic mutation, it is important to have a consultation with a gynecologic oncologist to discuss surgery to reduce the risk of ovarian cancer. There is no good screening for ovarian cancer but surgery can significant reduce the risk of developing cancer.”
But undergoing preventative surgery means that while my risk for ovarian cancer will decrease, many other risks could increase. Menopause comes with risks for heart disease, osteoporosis, hot flashes, emotional distress, and even cognitive decline. At 35.
It’s hard to imagine the implications this could have on my life. On my kids. But what is my alternative? My aunt was diagnosed with ovarian cancer at age 42. In the late 1990s, being tested for BRCA could mean losing your health insurance, so she had decided against it. She asked her doctors what they could have done and what would have happened if she had tested positive. A full hysterectomy, they replied.
She died a couple years later. Would that early action – the one I had the chance to take – have saved her life? Who knows. But it could save mine now.
Deciding to Undergo Surgery
My pre-op bloodwork revealed an alarmingly high CA-125, the only biomarker we have for ovarian cancer. The complication with CA-125 is it really measures inflammation and any number of things can affect inflammation. Dr. Haggerty knew my concerns and personally called me to tell me about the inflammation spike. She calmly told me she knew it looked concerning, but that it could very likely be due to ovulation. She called me again days later when my transvaginal ultrasound revealed I should be in the clear. Should be. She can make no promises and I don’t expect her to do that. Yet, the anxiety motivated me to take action to save my own life, before that spike led to something more sinister.
Still, the quality of my life is uncertain. Despite all the preventive measures I’ve taken and the fact that hysterectomy, along with removal of the ovaries and fallopian tubes, is a very common surgical procedure, there are no proven preventive measures for warding off the ill effects of early menopause. Treating symptoms seems to be a wait-and-see approach. No one can tell you exactly what to expect or how to prepare.
What Comes Next
Just days after having a bilateral salpingo-oophorectomy and total hysterectomy, I feel fine. I’m sore but not in pain. I was lucky enough to have a great surgeon in Dr. Haggerty and a non-complicated laparoscopic case. I chose the full hysterectomy for my own mental health so as not to add a fear of uterine cancer to my fears of ovarian cancer. I’m grateful that Dr. Haggerty helped me through that decision, understanding while it’s not a necessary measure to remove my uterus, it’s best for me.
Dr. Haggerty has put messages through to menopause specialists at Penn Medicine, but I can’t start any hormone therapy until 2 weeks post-op. My fear of cancer is now replaced by a fear of the unknown. But I’ve done all I can. Now we wait.
Opinions of the Basser Young Leadership Council members are their own personal opinions and do not necessarily represent those of the Basser Center.