THE Cancer Council has applauded Angelina Jolie for raising awareness about preventative double mastectomies but warned many women underestimate its impact on their lives and later regret their decision to have surgery.
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A 2011 study, which was co-written by professor of surgical oncology and Cancer Council spokeswoman Christobel Saunders, examined 40 women who had undergone mastectomies and had their ovaries removed.
It found the initial happiness following the procedure often turned negative when early menopause hit and libidos crashed.
''They can have a lot of grief even though initially they are pleased to get rid of the risk, particularly if they have any complications with surgery such as infection or numbness or further operations,'' Professor Saunders said.
''They didn't expect it to be quite as traumatic as it was psychologically, and with some physically as well.
In her article in The New York Times Jolie said she did not feel any less of a woman after having her breasts removed. ''I feel empowered that I made a strong choice that in no way diminishes my femininity,'' she said.
But many women in the study found the side effects of having their ovaries removed (which Jolie is still to do) traumatic.
Professor Saunders said the study found women who also had their ovaries removed were not prepared for early menopause with one participant of the study saying: ''I was aware of what to expect … but the severity of it I did not understand.''
Others talked about their lack of libido post-oophorectomy.
''More than just a lack of libido, it's complete, complete disinterest, you know complete - I don't know how to put it … I don't think that they really tell you.''
Another felt her femininity was removed.
''It's a shame that they can [remove your ovaries] and they can't replace the oestrogen or whatever that gives you that sexual drive … I mean you've lost your bits and pieces but then you lose that thing that makes you feel like a woman.''
The study found many women's sexuality was affected as having sexual relations became painful.
''I don't like my husband touching them [breasts] that much … they don't feel uncomfortable but it feels like you're touching a rock on you.''
Another complained of numbness. ''I think because I have that numbness and my husband knows I have that numbness he doesn't touch my breasts. Because I think he feels well you know you can't feel it what's the point sort of thing.''
Professor Christobel Saunders warned Australian women that mastectomies were not the only treatment option to reduce the risk of breast cancer.
''I think it's good that we have a public conversation about managing cancer in women who have a high risk but … [following mastectomies]they can have a lot of grief reaction down the line and that is our experience.''
Women concerned about their level of risk of cancer are advised to talk to their GP.
