Helen i have to disagree with you completely re ovarian screening…there is NO effective screening for ovarian Ca… there isnt even any screening at all since the UKFOCSS trial stopped recruiting in march… the two methods they used to screen are unreliable… CA125 is blood test for cancer markers… however although it can be increased in ovarian cancer it can be increased for many reason which affect inflammation of the abdominal cavity… so it could be raised if you are having a period, have cysts, fibriods, endometriosis, endometrial thickening due to tamoxifen, as well as other cancers and it can also be raised if your constoipated.
it can also be entirely normal when people do have ovarian cancer.
the transvaginal ultrasound is the other method of screening they used in the trial and that was found to lead to excessive interventions for what looked like changes but resulting in being normal.
the only really effective treatment for ovarian ca risk is risk reducing surgery with or without HRT.
i have a BRCA2 mutation i am also a breast care nurse in genetics and no patient would ever be informed that ovarian screening was effective… having a ca125 checked 4 monthly may suffice for some people but it doesnt lower the risk of getting the disease and it may not identify that you the disease… ultimately its up to the individual if they decide if they would be happy having ca125 checks (all that is available screening-wise now the trial has ended) or if they would prefer to have surgery or prefer to do nothing at all.
when it comes to the surgery you have two options… of having just your ovaries and tubes out called a bilateral salpingo-oophorectomy (BSO for short) or a Total abdominal hysterectomy (TAH) plus a BSO.
the cancer that affects the ovaries can also affect the tubes so you should never be recommend just to have the ovaries out and leave the tubes… you recover quicker after the BSO as its usually keyhole surgery so you are in hospital maybe only overnight and a recovery of a bout 2-4 weeks.
if you keep your uterus and are having HRT you need to have the combined kind to protect the endometrium… this type is the kind most associated with an increased risk of breast cancer.
if you are on or have been on tamoxifen there is also a very marginal increase in developing endometrial cancer so some people prefer to have the TAH + BSO however this is an open procedure and much more invasive… you will normally be in hospital for 3 to 5 days with a recovery of a bout 6 to 12 weeks.
one other aspect of deciding whether to keep your uterus or not could be the theoretical risk of cancer originating in the terminal ends of the fallopean tubes which are situated inside the uterus… there has been no documented cases of ovarian cancer developing from this part of the tubes but as its made of the same tissue so theoretically there is a chance.
having an open procedure can lead to problems associated with surgery eg damage to bladder, ureters or bowel is uncommon but can happen, larger wounds are more prone to infection and dehisssing and there could be problems of herniation… you gynaecologist should explain all this to you before you make your decision on whether to go ahead and which op you want.
i was planning to have a keyhole BSO but had fluctuating ca125 due to tamoxifen induced endometrial thickening despite having a mirena coil insitu so on the day of my op i changed my mind and went for the full TAH and BSO. it was 3 weeks ago and im recovering well.
the long term side effects as Helen says are instant menopausal symptoms which do not affect everybody but the common things are seriously mental hot flushes from a day or two post op. the risk of osteoporosis but this shouldnt be such an issue these days with bone strengthening drugs now available. you may get joint or bone pain or stiffness and other symptoms such as vaginal dryness and painful sex… for some people these side effects would make the surgery not an option.
if you havent had breast cancer then there is no increased risk of breast cancer if you have your ovaries out and take HRT… the level from the HRT is less than somebody would have going through the natural menopause… if you have had cancer then some doctors are not keen to prescribe it… if you have your uterus you would have the combined kind if you have hysterectomy you can have the oestrogen only kind… if you are premenopausal they recommend you take HRT to the natural menopause age of about 51 or for 5 year… so you could be on HRT for quite a while.
also one more point removing your breast and you ovaries is not 100% effective in minimising your risk… it does reduce it to 1-5% form 85% and its much less than the population risk but you still have to be body aware.
sorry for the mammoth essay… and sorry if iv put you to sleep.
Lulu