I am a BRCA2 carrier ( had breast cancer at 41)and will be having preventative surgery later in the year. I have been advised by one gynae to have a full hysterectomy because of the increase in uterine cancer but another one advised me to have just an oophorectomy. Can anyone give me some advice please?
Hi CT59
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June, moderator
I think you need to speak with the geneticist that tested you for the BRCA2 gene. They will have worked out a risk assessment for you based on your results and should be able to guide you to what prophylatic surgery you need. I know that the risk of ovarian cancer is increased but don’t know about the uterine cancer. Is the surgeon who wants to do the hysterectomy able to substantiate why he would do this specifically based on your results or is he just playing it safe?
My genetics team say the oophorectomy ought to be sufficient although there is always a small amount of fallopian tube left that they can’t remove. The gynae who advised the full hysterctomy is the senior consultant at my local hospital (I’m not completely sure of his reasoning) but because I want keyhole surgery I have to go with the other consultant.
I have read on other forums (US) where women who’ve had an oophorectomy have had to go back in for a full hysterectomy at a later date. Just wondered what people over here have experienced. Also if I have a hysterectomy I can opt to have some HRT to help my osteopenia (borderline osteoporosis). It’s all a bit confusing to say the least.
Thanks for your help
hi CT
im also a brca 2 carrier and had Bc twice at 37 and 40.
im waiting to go for bilateral mx surgery later in the year and have my ovaries out.
there is no link with uterine cancer and BRCA2 but there is a link with cancer of the ovary and cancer of the fallopean tubes.
why some doctors recommend having a hysterectomy is because the cells from the ovary can spread to the uterus… but if you didnt have any signs of cancer of the ovary then its highly unlikely you would have cells in the uterus.
if you chopped every bit out of you that had a risk of cancer there’d be none of you left.
the risk of ovarian cancer in the uterus is very low compared to your risk of ovarian cancer which is for brca 2 is pretty low at around 20% compared to brca1 which is around 60% but what it does do is decrease your risk of breast cancer by around 80%.
the HRT is for ovary removal not hysterectomy… a hysterectomy has no bearing really on your risk of cancer, but if you have your ovaries removed then there is very little ciculating oestrogen so they will give HRT in some occassions (some docs still say no if you had ER +ve cancer)
Lx
Have you spoken to your oncologist about these choices as they may be able to guide you too. Having a prophylatic hysterectomy where there is little evidence to suggest it is likely to become cancerous is a weak reason to undergo the surgery. Ovarian cancer is more likely, but as Lulu said, oophrectomy in this case is based on reducing the risk of breast cancer as it removed circulating oestrogens. A hysterectomy is a major operation which can have lots of future problems such as incontinence, proplapse etc. and shouldn’t be undertaken unless necessary, whereas the oophrectomy is a very simple operation, I believe. You clearly need another opinion.
Thanks for your help everyone.
My risk of ovarian cancer is actually about 35% because both my cousin of 34 and my grandmother died from it. Having said that I think I will probably opt for the oophorectomy because as you say a hysterectomy is a major operation. I suppose part of me is trying to prevent future surgery as I have other medical conditions which cause a few concerns when having anaesthesia.
It doesn’t help either when 2 gynaecologists on the same team give different advice! I also had the same problem with the breast consultants giving me conflicting advice about reconstruction.
Thanks again