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[–]MarkTwainiac 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (0 children)

The one main reason that is usually cited for recommending that the internal testes be removed is that there's a risk of the testes becoming cancerous starting in early adulthood. However, it appears that this risk may have been overstated: https://pubmed.ncbi.nlm.nih.gov/28351649/

Also, whereas in the past just the word "cancer" was enough to scared the hell out of people coz it raised the specter of certain death, nowadays there is a more sophisticated understanding both amongst medical practitioners and the public that not all cancers are the same. Re testicular cancer in CAIS specifically:

The diagnosis (of CAIS) is based on the presence of female external genitalia in a 46, XY human individual, with normally developed but undescended testes and complete unresponsiveness of target tissues to androgens... this condition is associated with an increased risk of testicular germ cell tumour (TGCT), although TGCT results less frequently than in other disorders of sex development (DSD). Furthermore, the majority of detected tumoral lesions are non-invasive and with a low probability of progression into aggressive forms.

The exact incidence of cancer in patients with CAIS is very difficult to estimate because of the frequent change in management of this disorder over the years, particularly regarding the correct time of gonadectomy. Data from the literature review report a general risk of approximately 5% in AIS disorder overall and a prevalence of <1% in CAIS. In addition, the risk of malignant progression is elevated only with increased age; indeed, it rarely occurs in prepubertal age (less than 1%), in contrast with other DSD, including PAIS. In the general population, GCNIS advances into invasive cancer in approximately 50% of cases over five years, while the majority of malignant lesions described in patients with CAIS after puberty were pre-GCNIS or GCNIS, with a low likelihood of becoming invasive. These data suggest that malignant progression from pre-GCNIS to invasive TCGT is very infrequent and probably takes place only in late adulthood. These findings validate the possibility of postponing a gonadectomy until after puberty. Even the occurrence of a bilateral inguinal hernia during childhood no longer represents an absolute indication for early gonadectomy.

Several studies have tried to identify [specific additional] factors associated with cancer development and progression

in persons with CAIS beyond just the the presence of CAIS itself. Also

There may be several reasons for a low trend of malignancy in retained gonads in patients with CAIS. First, in contrast with other disorders of sexual development with gonadal dysgenesis, testicular tissue is normally developed in CAIS. Second, the lack of signal coming from androgens may play a key role in modulating cellular development and differentiation. Finally, the high rate of germ cell apoptosis in CAIS reduces the possibility of malignant evolution. However, the residual paracrine actions of androgen in testicular tissue, also described in CAIS, could be a risk factor for cancer development, especially during and after puberty. Indeed, it could promote neoplastic progression of germ cells and explain the increased risk of developing malignancy in adulthood. On the other hand, some authors suggested the possible protective role of the residual androgen activity in cancer development, precisely because it allows the survival of the normal germ cell population overall.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6480640/

https://pubmed.ncbi.nlm.nih.gov/30970592/

Clearly, the situation re gonadal function and the routine removal of the entirely normal and normally-functioning gonads that persons with CAIS have for "prophylatic" reasons is much more complicated that it has been portrayed traditionally.

But another reason for recommending that the testes be removed appears to be prejudice within the medical community owing to such beliefs and unexamined assumptions as: the internal testes of persons with CAIS do more physical harm than good; having gonads of "the wrong" sex is likely to cause psychological problems for all patients; and taking exogenous hormones manufactured by Big Pharma is just as good - or better - than having hormones that naturally come from one's own gonads and are converted via aromatase.

Yet another reason might be the medical establishment's longterm affinity for aggressive surgical solutions to vexing medical problems; if certain organs are likely to cause problems down the line, the reasoning has been, why not just yank the pesky buggers out once and for all? Giving extra "credence" to this approach have been aforementioned assumptions that certain organs are "useless," do more harm than good or have outlived their purpose.

The sex and sexism of many the physicians who treat people with CAIS probably have come into play as well: after all, most of these doctors are men, and knowing how hung up on dicks and balls men are, it's conceivable that some/many men who practice medicine might have a real problem with the idea that patients they perceive as girls and women have internal testes.

Whilst removing the internal testes does indeed totally remove the risk of the specific kind of cancer they might develop - TGCT aka gonadal germ cell cancer - the experience of persons with CAIS who've had their testes removed also show that there also are, or can be, health and psychological downsides to removal that previously had not been acknowledged.

An international survey of 22 medical centers from 16 countries published in 2018 showed that gonadectomy by or in early adulthood was routinely recommended by 67% of the centers, but that 11.4% of patients with CAIS refused gonadectomy. Some patients and medical specialists suggest that a better, more evidence-based approach would be to wait and see whilst conducting rigorous regular cancer screening of the gonads rather than just removing them outright. With todays' diagnostic techniques and ability to detect genetic and other factors that might help trigger development - and/or those that might protect against development - of specific cancers within specific populations and individuals, routine gonadectomies might not be the only or best way to protect the longterm health of persons with CAIS.

https://www.karger.com/Article/Abstract/493645