When You Cut Away the Risk, What is Left?

What is TRUE and what is just convenient to tell your patients? Is there a lack of current data, or does my doctor lack understanding in this particular area? Is it just too uncomfortable and inconvenient for her to tell me the truth or is she worried about legal culpability, imagining some future lawsuit and her malpractice rates going through the roof?

What do I do when my doctor questions my resolve for a certain type of surgery by tossing into the air a supposed added risk of a rare uterine cancer for some BRCA1+ women? I am not comforted when I probe her for statistics and data and she has to consult her computer, looking for articles to back her up. She prints out a huge stack for me to comb through later. My face glazed over as she wondered out loud, “why keep your uterus when you’re not having more babies anyway.” When she launched into, “why keep your cervix either when it might pose a risk” she saw my frame freeze up and finally stopped talking.

Perhaps I am not your average patient, although I’d like to think we are an army rising. We are a new breed of informed healthcare consumers who ask the tough questions, who pour through articles and medical abstracts combing for statistics and hard data. It is no longer enough to sit back and eat the words of our most trusted doctors. My blind faith in the omnipotent knowledge of my medical team is as strong as the threads their diplomas hang by.

I take home the big stack of articles and try to find the evidence she pointed out. Very little was in there that could help me, but it did lead me to further research online. I found a study that was done where women who tested positive for the BRCA1 and BRCA2 gene mutation were followed for a period of time. They did find that out of the 296 BRCA1 women in this study, 4 of them developed uterine cancer. 3 of them were breast cancer survivors. Interestingly, 2 of them had used Tamoxifen as part of their breast cancer therapy.

That article, from March of 2014, also cited data from an even larger study, one done with 10 times the number of patients. In this one, of 4456 women with BRCA mutations, the increased risk for endometrial cancer was restricted to those who had used tamoxifen. The article concluded by saying that, “hysterectomy should not routinely be recommended as a part of prophylactic surgery for BRCA1 and BRCA2 mutation carriers”.

Thankfully, I never did take Tamoxifen, although it was presented to me as a choice. I was sent home with a pamphlet about it and told to think it over and to let my oncologist know my choice at the next visit. I don’t remember anything explicit about the added risk of high-grade, aggressive uterine cancer in either that conversation or in the pamphlet. Tamoxifen “may protect you” from a breast cancer recurrence did not compute for me after having recently gone through a complete double mastectomy and finally through the other side of 5 grueling months of chemo. I decided my body needed a break from chemicals.

Why would both my gynecologist and gynecological oncologist throw this idea of hysterectomy into the arena when this is not the current accepted practice? I am trying to moderate between educated choice and a “do no harm” philosophy. If decisions are based on risk assessment, the panicked voice in my brain asks, WHAT WILL THEY WANT TO CUT OUT NEXT? The idea of facing the blade for a bilateral salpingo-opphorectomy is taxing enough, knowing I’ll be thrust into surgical menopause overnight. Cutting out my uterus feels much more invasive, not something for my gynecologist to flippantly brush off by saying how easily it “slides right out of the vaginal canal” at the end of a laparoscopic surgery.

I hold onto my abdomen, imagining my uterus quietly inside me and think about the cycles of the moon. There is no howling storm approaching, just the emptiness that once housed my son’s growing body. Where the hell is my crystal ball? I want to make the best choice, an educated choice.

If we severed parts of ourselves anytime we felt risk, what would be left?

*This blog and this post is in no way offering medical advice to anyone, but merely reflecting the feelings and insights of the author. Nothing can replace your own research and conversations with your medical team and circle of support.

To review the articles and data referenced in this blog, go to:

http://www.medscape.com/viewarticle/822542#vp_1

http://www.ascopost.com/issues/december-1-2013/reasonable-but-not-required-for-women-with-brca-mutations-to-have-hysterectomy-concurrent-with-salpingo-oophorectomy/

http://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q3