The Shop Is Closed

I hung up the phone with my gynecologist armed with a prescription for a breast MRI and the names/phone numbers of gynecologic oncologists.

The breast MRI would be delayed. Why?  I had received my second COVID vaccine literally two days before I received the news of my BRCA status.  Why is that relevant?  Radiologists and breast oncologists were just learning that the COVID vaccine sometimes resulted in temporarily enlarged lymph nodes which could be mistaken for tumors or other masses on breast images.  Women were being advised to delay mammograms and MRIs until 6 weeks after receiving a COVID vaccine.  I could not go for a breast MRI until the middle of May. 

Why did I need to see a gynecologic oncologist?  Isn’t BRCA related to breast cancer?  Yes, but…per my earlier blogs, my risk of hereditary ovarian cancer was 40%-60% (compared to 1%-2% in the general population).  My grandmother died of ovarian cancer.  The risk for me was very personal.

The scary thing about ovarian cancer is that no good screening test exists for early detection.  There is a blood test which detects a specific protein, C125, that is sometimes elevated in women with ovarian cancer.  However, the test is not considered to be sensitive or specific enough to detect ovarian cancer in high-risk women.  It is certainly nothing to rely upon for screening purposes.

There are transvaginal ultrasounds and regular pelvic exams, but they will not necessarily detect early-stage cancer.  Transvaginal ultrasounds in particular are very invasive. Mammograms and MRIs are bad enough; who wants to add a transvaginal ultrasound to their battery of annual tests?

Bottom line:  Experts do not recommend routine screening for women at high risk for ovarian cancer.

So what do they recommend?  Surgery.  Yes, that is correct—surgery is the standard of care for otherwise healthy women with a BRCA1 or BRCA2 mutation to prevent ovarian cancer.

I was able to see a gynecologic oncologist pretty quickly.  As expected, he recommended surgery—a bilateral salpingo-oophorectomy (BSO).  For those of you who have not gone to medical school, this means surgical removal of the ovaries and fallopian tubes.  BSO is the recommendation from the National Comprehensive Cancer Network for women with a BRCA1 or BRCA2 mutation who have completed their childbearing. 

My doctor suggested going a step further, and removing my uterus (ie, a complete hysterectomy) and cervix.  He recommended this extra step because he considered the reproductive organs as a unit, and leaving the uterus would leave me vulnerable to endometrial cancer.  Women with a BRCA1 mutation are also at increased, though still small, risk of a rare but very aggressive uterine cancer.  I decided to go ahead with the more extensive surgery.  My rationale was that I was having surgery anyway, and I certainly wasn’t having more children, so the surgeon may as well take it all. I discussed this with my regular gynecologist, Dr. K, and he concurred.  I scheduled the surgery for mid-June.

The decision to go forward with the BSO has probably been the easiest decision I have faced since learning of my mutation.  My child bearing years are long over; as we say in my family, the shop is closed.  I didn’t need this “equipment” anymore, and I am postmenopausal.  This decision can be much, much more difficult if you learn of your BRCA status at a younger age.  Removing ovaries in younger women leads to surgical menopause.  That fact that I made it to my age without a cancer diagnosis was actually a blessing; if I had known when I was in my 30s or 40s, my experience would have been different and my choices much more difficult.

In retrospect, I wonder if I didn’t rush into the decision to have the hysterectomy.  I’m not really sure I needed it, and I wonder if I really considered the risks involved.  I think to a certain extent I was still in a state of shock and just wanted to do something proactive, and went with the surgeon’s recommendation.  Fortunately, the surgery went smoothly (more on that in another blog post) but I think I would have benefitted from slowing down a bit.