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How aware of the uncertainty were those “experts” who recommended they have surgery? Was that uncertainty effectively communicated to this family? Surgery carri

How aware of the uncertainty were those “experts” who recommended they have surgery? Was that uncertainty effectively communicated to this family? Surgery carries risk and costs as well. And it’s becoming more likely that the risk assumed by these women might have been needless. Is there no accountability to be assigned at all because all is well that ends well? Throughout my life, and ESPECIALLY in medicine, there has been constant change in understanding but never a shortage of confidence by “experts” assuring me we got it right this time.

hobofan 7y ago
Was it really the experts that suggested surgery, or was it the patients that based on the genetic testing seeked out surgery? (I'm actually asking, as I'm blocked by the WSJ paywall.)
- bookofjoe 7y ago
  http://archive.is/7S89q http://archive.is/7S89q
stevehawk 7y ago
I'd bet the surgery was not recommended for some of them. BRCA isn't a death sentence just because you've tested positive (assuming you haven't presented with any symptoms). If you're in your 20s or 30s the "experts" usually tell you to stay proactive on monitoring/medical appointments (self breast exams, ultrasounds of ovaries/uterus, etc) until you're done having children. Once you're done with having children you should consider a double mastectomy and possible hysterectomy. But we live in the age of Google. Our ability to search the Internet tends to result in patients making horrific decisions. My wife is a breast cancer surgeon and has a late 20s BRCA patient that presented with a significant breast mass six months ago. She refused any of the advised treatments because she was breast feeding at the time and stated to my wife, with a straight face, she would simply cut out sugar because she read that helps. Obviously my wife told her otherwise. Same lady came back in recently to finally seek treatment and she has a 30cm mass now. She's not even a candidate for surgery anymore because you wouldn't be able to close the wound post-op. But hey, imagine what it would have been like if she had kept eating sugar, right? Silly "experts".
- Alex3917 7y ago
  Hysterectomy makes much more sense than double mastectomy. Breast cancer is detectable and in most cases treatable, whereas ovarian cancer can't really be detected until it's already fatal.
  - stevehawk 7y ago
    Mastectomy is the preferred treatment for a lot of breast cancers, particularly BRCA. Otherwise the woman or man is likely to just be back in a few years for treatment when they develop the cancer in a different spot.
ineedasername 7y ago
Again, none of that is an indictment against preventative medicine base on genetic testing. It's an argument that medical professionals involved in it should be knowledgeable and up front about balancing risks.

hobofan 7y ago

Was it really the experts that suggested surgery, or was it the patients that based on the genetic testing seeked out surgery? (I'm actually asking, as I'm blocked by the WSJ paywall.)

bookofjoe 7y ago
http://archive.is/7S89q http://archive.is/7S89q

stevehawk 7y ago

I'd bet the surgery was not recommended for some of them. BRCA isn't a death sentence just because you've tested positive (assuming you haven't presented with any symptoms). If you're in your 20s or 30s the "experts" usually tell you to stay proactive on monitoring/medical appointments (self breast exams, ultrasounds of ovaries/uterus, etc) until you're done having children. Once you're done with having children you should consider a double mastectomy and possible hysterectomy. But we live in the age of Google. Our ability to search the Internet tends to result in patients making horrific decisions. My wife is a breast cancer surgeon and has a late 20s BRCA patient that presented with a significant breast mass six months ago. She refused any of the advised treatments because she was breast feeding at the time and stated to my wife, with a straight face, she would simply cut out sugar because she read that helps. Obviously my wife told her otherwise. Same lady came back in recently to finally seek treatment and she has a 30cm mass now. She's not even a candidate for surgery anymore because you wouldn't be able to close the wound post-op. But hey, imagine what it would have been like if she had kept eating sugar, right? Silly "experts".

Alex3917 7y ago
Hysterectomy makes much more sense than double mastectomy. Breast cancer is detectable and in most cases treatable, whereas ovarian cancer can't really be detected until it's already fatal.
- stevehawk 7y ago
  Mastectomy is the preferred treatment for a lot of breast cancers, particularly BRCA. Otherwise the woman or man is likely to just be back in a few years for treatment when they develop the cancer in a different spot.

ineedasername 7y ago

Again, none of that is an indictment against preventative medicine base on genetic testing. It's an argument that medical professionals involved in it should be knowledgeable and up front about balancing risks.