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NPR had a segment about this the other day.
Part of the issue with removing the nuts (gonadal tissue?) Is that these people have major issues with bone density and other sex hormone related problems whereas the risk of cancer is similar to any male getting testicular cancer.
They aren't given a choice because the surgery happens at a young age, yet they have to bear the medical consequences.
Is that why women suffer from osteoporosis more than men? Testosterone makes bones stronger?
The dairy industry had it wrong all these years
So disclaimer here, I’m only savvy on the molecular bio and can’t speak as much to the actual healthcare side of things, but the actual diagnosis is a little more complex than what I’ve written here. Sometimes streak gonads (gonadal tissue which failed to become fully functional ovaries or testes) will still contain some testis or ovarian tissue which will produce hormones. Just depends on the severity of the gonadal dysgenesis.
But as you’ve written it here is seems NPR is implying the surgery itself causes bone density issues? Those issues arise due to an absence of sex hormones, which would still be a problem in complete gonadal dysgenesis. This is why treatment is usually paired with hormone therapy as well as surgery.
I can’t speak to the relative risks of either, though. As with any surgery and treatment, it’s a medical decision with a lot of factors.
This is also outside of my area of expertise, but I am guessing the NPR interview is this one from Fresh Air:
The Wikipedia article again gives some context:
So the argument, I think, is that the risk of cancer is very low before puberty, and people with CAIS should be involved in the decisions - since it may be pretty safe to allow puberty to happen prior to gonadal removal, at the least, which would obviate the need for surgery as a very young child and hormone replacement as an adolescent (a non trivial burden for a young person).
Ohhh, I see my confusion now. My original comment was about Swyer syndrome, not CAIS. CAIS and Swyer Syndrome are very similar in concept but have a lot of important differences, especially in gonadal development. Usually in CAIS the testes will develop which can produce sex hormones, while Swyer syndrome leads to streak gonads which are generally functionless. Seems like there’s quite a debate about the timing of gonadectomy in CAIS indeed.