If any of you have access to the WSJ, there is an interesting article about women from a particular family who were tested for the BRCA gene mutation and opted to have preventive mastectomies and ovary removal.
The TLDR version: What scientists know about the BRCA gene is evolving. Seven women from the same family used a lab named Myriad to have genetic testing. They had a particular BRCA mutation and they elected to have the preventive procedures. Ten years later and with more data points, Myriad is changing the characterization of this particular mutation from "pathogenic" to "unknown significance."
The article focused the most on a woman who had one child and then elected to have the procedure based on the genetic results. This is what was initially presented to her:
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It stated she had up to an 84% risk of breast cancer by age 70, compared with 7.3% in the general population, and up to 27% risk of ovarian cancer by age 70, compared with 0.7% in the general population.
This was her reaction:
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One day in September 2015, a month after she got her report, she woke up with intense sadness, finally acknowledging that surgery would mean she could have no more children. She cried all the way to work and sat in her car, unable to go in. She called the principal from the parking lot, crying, and said she couldn’t come to work.
In the article she is quoted as saying the complications from the mastectomy and not being able to have more children "strained" her marriage. (I read stuff like this and I'm dismayed, but not surprised, there are men in the world who conditionally love women for their tits and their ability to bear children. Glad I'm not married to one of those.)
Note: Other genetic companies are not downgrading the risk of this mutation. This woman saw a genetic counselor about the revised results. Given her family history + uncertain status of her mutation, the counselor estimated her lifetime risk of getting breast cancer was 21%, which is about three times more than average. (The article does not state what the risk is for ovarian cancer.)
The woman is quoted that she would have had more children if she had been told this was her true risk level. The entire article read like a lawsuit was coming down the road.
I do have sympathy for these women but if they are going to use for "lost potential childrun" argument, they need to lose, simply because success means other women who truly want these procedures to reduce their risks may not be able to obtain them.
Some of the comments were really ignorant. Yes, genetic science is in its infancy, but many commenters are poo-pooing the surgery altogether because women can be "monitored" for ovarian cancer or breast cancer. There is no reliable test for ovarian cancer. Some strains are quite aggressive and by the time a woman is having symptoms, it's too late. Plus, having breast biopsies every six months is painful and nerve-wracking. Also, some of the numb nuts were saying, she could have had A Son and not passed it on. They obviously don't realize that males with one of the true BRCA variants have a elevated risk for pancreatic cancer and other cancers.