Hi,
I have a planned key hole hysterectomy planned for beginning feb because my cancer was 100% hormone driven, I am wondering if anyone has had this done and can advise the expected recovery time, I have a 5 year old and a 2 year old so will be difficult in that respect, also am 32 so wondering what the menopause symptoms will be like currently getting hot flushes on Tamoxifen but finding these managable (so far). xx
Hello
I haven’t had mine yet but will be having it soon!
My cancer was genetic (and hormone negative) so I’m having a full hysterectomy as soon as possible. I was diagnosed whilst pregnant and the gyne dr wouldn’t touch me until my daughter turned 1…well that’s at the start of March so I’m booked in to see him the week after to (hopefully) set an op date.
Originally he wanted to just take out my ovaries…he said “I’ll just take out your ovaries and then you’ll have HRT so you’ll still have periods of a type” (smile on his face as though that’s what every woman wants!). I told him that if he’s taking something I’d rather he took the lot so that’s what he agreed to LOL He was uncertain though as to whether he would do keyhole or open surgery - I’m hoping for keyhole from your post.
The HRT bit scares me a little just in case I then get a hormone positive cancer but my Onc assures me I’ll be fine on HRT.
Anyway, good luck. I’m sure you’ll be fine. The gyne dr did tell me that keyhole ovarian removal was a week or perhaps 2 recovery whereas open full hysterectomy was more like 3 months.
Faye
I’m due to have my ovaries and fallopian tubes removed next week via keyhole surgery. This is due to the fact I tested positive for the BRCA 2 gene which increases my risk of ovarian cancer. I wasn’t offered a hysterectomy and not sure I would have done this if I had been offered. A 2 week recovery time sounds better than 3 months.
I can’t have HRT as my cancer was hormone positive. I’m also on tamoxifen and doing ok a few hot flushes and occasional joint aches, but nothing too much. My gynae onc said the menopausal symtoms can become more extreme and are immediate, but for every symton there is a solution!
Good luck.
Will they swap you off the Tamoxifen and onto Arimidex or similar once your ovaries are gone?
i had an open hyst and ooph in sept as im a BRCA 2 carrier… one breast tumour was strongly ER positive and was triple negative… being hormone sensitive wasnt an issue in having the hyst just that i had an increased risk of ovarian cancer.
i was on tamoxifen for 1st tumour and although i could change to arimidex or anothr AI i have chosen to stay on tamox as i dont want to risk the SEs on the AIs and tamox isnt too bad.
the hot flushes are insane… they started a couple of days post-op when i was still in hosp and havent got any better but not had any other symptoms although my family may disagree on the mood front LOL
cat they should have offered you a hyst if you have the gene as there is a very small theorectical risk of ovarian cancer at the terminal point of the tubes where they join the uterus… it is only theoretical as there are no known cases of cancer originating in that area but because it is known to have cancers originating in the tubes this is usually given as an option when making your decision.
BTW mine was an open hyst and was advised about 3 months off work and no heavy lifting in that time but couldnt stay off that long so had 7 weeks off but didnt do anything too strenuous… im now totally recovered.
Lxx
HRT has changed, and the type/s that were shown to be implicated in breast cancer have been discontinued. Remember one reason for HRT, especially for early menopause of any type, is to keep your chances of heart problems to pre-menopausal levels.
Choccimuffin, in answer to your question, you do not always switch from tamox after an ooph. I had ooph in july 2009 but am still on tamox. My onc said as i was so young (34) at dx then i needed to stay on tamox for over 3 years before switching, regardless of ovaries. They are thinking of changing me in Sept, 3.5 years from dx and just over 2 years since ooph.
CherylLT
I didnt know this about HRT. I had ovaries removed aged 35 and am told i cannot have hrt as 100% + for both hormones. Does this mean i could have it? Or perhaps not, because im assuming that it still contains oestrogen and therefore should be avoided in my position?
I’m glad I found this thread. I had WLE & SNB last week & due to get my results tomorrow. Since Op & reading some literature I’ve been planning to ask my Consultant tomorrow if I could elect a full Hyst or ovary removal if I was found to be hormone+. I’m 52 in March with no plans whatsoever of trying to get into the Guiness Book of Records so pragmatically thought that, for me & the NHS, it could work out to be more cost effective than 5yrs of suppresant meds - I hadn’t thought about the counter cost of HRT though!
When you are hormone positive, even if you have ovaries removed, you still need 5 years of tablets im afraid, just different tablets.
HRT still exists that increases your risk of BC but its the length of time you are on it that is found to increase your risk significantly.
with the combined kind you are now recommended not to have it for longer than 5 years… in the past people were on it for 10 or 15 years… if you are on it that long there is a significant increase… this is based on a popluation who havent had breast cancer… if you have a full hysterectomy you only need to have the oestrogen only type which has been found to cause less breast cancers than the combined type… again based on a population of non BC ladies.
for ladies who dont have cancer but have a brca gene mutation they are encouraged to have 5 years of HRT after removal of ovaries as it has been show that having your ovaries out and taking HRT is less of a risk than keeping your ovaries and not having HRT in that group of women.
for women who have had breast cancer there is no definitive rule as all oncologist and surgeons see it differently… my consultant wants me to have HRT as a brca 2 carrier and y most aggressive cancer was hormone negative… i havent gone down that road but havent ruled it out either if symptoms get too bad.
there is only 1 study i know of that sad taking your ovaries out after BC reduces the risk of recurrence but wasnt based on european women but women in vietman and china so other factors may well have influenced the results such as the fact they dont have the same access to chemotherapy and its unclear whether they had this, all it said was they had early breast cancer treated by surgery and ooph and tamox or surgery and tamox only… despite no chemo there was a minimum 61% survival to 5 years for all.
there may be other studies since 2008 but this is the only one i can find.
there is the option of having zoladex to close down your ovaries too and think that has been studied a bit more… im off out just now but will have a wee look to see if i can find anything more.
lulu x
As my BC was 7/8 for both hormones, I was advised by the onc that HRT was not advisable. He did offer the option of having a mirena coil inserted as it would help reduce the risk of uterine cancer which is increased by being on tamoxifen, but I didn’t like the idea of any hormones, even though I know that alot of oncs think it is ok.
I was also told I could switch to AI. Lulu is there any research that shows any difference in recurrence in taking tamoxifen versus AI’s for BRCA 2 carriers?
I wasn’t offered the option of a hysterectomy, but he did strongly advise me to remove ovaries to reduce the risk of ovarian cancer (a 1 in 4 risk apparently), but did say some cells could be left and ovarian cancer could grow in the lining of the stomach. (not sure if I’ve got that entirely right)
there is a 3% residual risk of primary peritoneal cancer which comes from the cells left over from tubes and ovaries being removed… the peritoneum is the internal lining of the abdominal cavity.
its a rare cancer but that small risk is there basically so that people know even if they have prophylactic surgery it doesnt mean you wont ever get cancer but the risk is very small.
there is a trial called IBIS2 which is looking at the effects of aromatase inhibitors as a preventative measure in women with an increased family history but not specifically a gene mutation… they already looked at tamoxifen as prevention through IBIS1 and found it reduced the risk of BC by about 30%… this wasnt in patients who have had BC but women who are high risk… the results of IBIS2 havent been analysed yet.
as for comparing AI to tamoxifen, the initial studies in postmenopausal women… (those who were conformed post menopausal at the time of diagnosis) found that the AI was the gold standard however many women are pre-meno at Dx but treatment or interventions to make the post-meno and as far as i know there is no results relating to this specific area yet.
iv been looking into specific articles relating to AI versus tamox for affected gene carriers but not found anything yet… will ask my colleagues too if they know of anything.
Lx
I had open hysterectomy and salpingo-oopherectomy two years before Dx , will always wonder if the removal of my ovaries caused Oestrogen dominance and hence the BC (ER+8).
I would just advise that even though it is keyhole surgery, you will still have had a major op, so take it easy, there’s a lot of healing going on inside! Best wishes.
Pxxx
Keyhole surgery sounds much better than open hysterectomy. I had the lot removed a few years back. It is a big op but I recovered well and have flat tum! I wasn’t allowed to lift anything at first not even a kettle, and definitely not a small child. I’m still having 5 years of tamoxifen so am now on 3rd lot of hot flushes!