Taboo

17Jun14

My (second) genetic consultation is coming up soon.  BRCA is certainly on my mind more than usual.  And my mind is not thinking the along the usual lines.

When going through the shock, worry, and frustration of learning about BRCA the first time, I made up my mind that I would face up to the numbers and reality.  I started to think seriously about what would I do if I found out I was positive.  I seemed to take prophylactic mastectomy as a given and then spent my time considering reconstruction.  I got quite comfortable with the idea of no reconstruction.  On prophylactic bilateral salpingo-oophorectomy (good grief these words are hard to spell), I balked at the idea and hunkered down to consider what an evidence-based decision would look like.  I examined the boundaries of the hypothesized ovarian cancer region of BRCA2 and got terribly excited about new research that suggested ovarian cancer may start in the fallopian tubes.  That brought up the possibility that removing just the fallopian tubes as a risk-reducing strategy which felt like a reasonable compromise: salpingorectomy before 40 and oophorectomy later.

And so it seemed like before I even signed up for testing, I was feeling ready to make whatever life-altering decisions would need to be made.  But after a four year hiatus, my mind has gone back to the beginning and entertaining what feels like a taboo:  why surgery at all?

My father’s response—when I told him about the BRCA mutation in the family and what it could mean for me—was to argue surgery was completely unnecessary and imply I was being brainwashed by the medical mainstream.  I was angry and vowed not to bring that topic up again with him.  Besides the dismissive and ignorant, “You’re overreacting, you won’t get cancer if you just take care of yourself,” there are also horrific stories of women of whose intelligence and character was publicly dismantled for choosing surgery.  I have no desire to flirt with such crack-pot science and self-righteous disdain.  Moreover, I know my mother would have a quite a few words to say about weighing the cost of surgery with the high-risk of cancer.

In fact, I think my ready acceptance of  prophylactic mastectomy came from looking at what my mother was going through at the time.   Mastectomy was a trivial afterthought to all the other medical procedures and pain she had to go through.  I never doubted for a moment that if she had the option for mastectomy to prevent her cancer she would have taken it without hesitation.  In fact, she exhausted every possible treatment she could to buy a few more years, a few more months with us.  So considering surgery as optional seems not just thick-skulled but disgraceful.

But just how do you measure such decisions?  How can we not get tied into a numbers game when that is what drives medical care?  Yet, how much do we actually understand the meaning and accuracy of the statistics?

 

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