Prophylactic oophorectomy

Dear ladies,

I’m going to have a Prophylactic oophorectomy and I am a bit anxious about it. Tamoxifen will soon finish for me and also, I got a big cyst in one of my ovaries, for all of that myself and my onco. have thought os this procedure to try to minimize the risk of a new BC. I’ve had done a bit of research on the net and Ahrgggg!!!. I was so sure I wanted to have the procedure done before I got to read those things. I bit of elightement would be helpful here.

XX

I had this proceedure a couple of years ago, as like you I had a cyst on my ovary. Mine was done by keyhole surgery and the scars were minimal (barely detectable now!) I stayed in hospital for one night, then was discharged the next day. I took 2 weeks off work, but was surprised by how easy I found it, I was expecting pain which I didn’t have, more minor discomfort if I tried to do too much (which I did!)so really I was functioning as normal straightaway.

I was also worried about being plunged into ‘surgical menopause’ I had far worse menopausal symptoms being on Tamoxifen than following surgery. I had one very down weepy day, then I was fine!

If you have any questions feel free to PM me,

Nicola x

I had one too, because of having the BRCA1 mutation. I was told it would be a walk in the park, but it was a bit of a treck up the mountain, however all is forgetten now, and I am fine. Prepare yourself for month off work or housework etc and you will be fine
Take care of yourself and good luck
xx

I had one because of a BRCA 2 mutation in Jan this year. It was keyhole surgery, in for 1 night. 3 small incisions, so minimal scarring. I has some discomfort for about 3 days and was then fine. Doctor recommended 2 weeks off work.

Hi,
I had one several years ago, like you to try to prevent any recurrence. Mine too was done keyhole, I think that’s the way most surgeons prefer where possible.
Only one or two nights in hospital, minimal pain, more discomfort, no real scars. Actually quite surprised at ease of it all, try not to worry xx

My ooph was done via keyhole and i was a day surgery patient. I went to thatre at 10am and was home at 3pm and at schools parents eve that night! Sore for a few days, driving after 4 days. Was 2 years ago and cannot see any scars now. Menopause no worse than zoladex and tamoxifen.

i had an open hyst and ooph as im brca 2 last sept… i was only in hosp 3 nights and was back at work within 7 weeks.

i did get an infection 5 months after surgery but thats pretty unusual.

flushes for me are worse than on tamox but on a par with chemo. they are annoying but not life threatening.

Lulu

Thanks for all the information ladies.

I’ve got one more questions, in terms of recurrence, how effective is the procedure?.

xx

dear happy nipple, I would think seriously before having the oophorectomy. Research shows that there are consequences to having this proceedure. you are 7 times more likely to have cardiovascular diseases, increased risk of parkinsons dieseas, dementia and cognitive impairment. Looking at your diet, lifestyle, stress levels and getting your hormones stable would probably be more effective in the long term.
Best wishes
Leadie

Happynipple, my onc offered it as soon as i got my results. If you are 8/8 for both hormones then it is well worth having, as well as protecting from ovarian cancer.

I disagree there is no evidence per as that having our ovaries out will actually prevent recurrence if it were that simple nobody who is post menopausal would actually develop it in the firts place. But hormones are produced from other areas of the body. I would seriously consider having it done purely because you cancer is hormone positive.

If the cancer is small with a low grade and no nodes then your risk of recurrence is pretty smally anyway. But even larger high grade tumours the evidence doesn’t support this over traditional treatment.

Lulu xx

Once again, different hosps, different oncs, different opinions!

Hello

I will have an oophorectomy (am pre-menopaulsal on TAM) in a couple of weeks time. Can any of you please enlighten me a bit about your menopausal SE’s (hot flushes, sex drive, interrupted sleep, weight gain, bone health etc) post surgery? Were they any worse?

If you were on TAM, did you stay on it? Are you taking any supplements to keep bones strong?

I am still in the ‘chemo pause’ with hot flushes, interrupted sleep etc, but just would like to prepare myself.

Btw Lulu - my ONC shares your view on this procedure. No evidence/guarantees.

Many thanks, Nikki

Hi Nikki

I was on zoladex and tamoxifen for 15 months before my ooph. The side effects in the 2 years since this op have been the same as before the op, a few mild flushes each day. My bone density remains good. I am still on tamoxifen. Took adcal d3 for a year but they took me off it as it was putting too much calcium in my blood, so now i eat extra dairy instead.

Bump

Nikki, I have dicussed this with my onc today after my periods returned last week. He said that he would never recommend an oophrectomy without trying zoladex first, just to see how bad the SEs are. Sounds as though it’s a bit late now, but could it be worth trying out the menopause before you go for it and can’t turn back the clock?

I’ve been told to decide for myself what i want to do as there isn’t one standard, obvious way forward with definite benefits! Marvellous.

Good luck with yours. xxxx Jane

At my hosp you have to have zoladex for a least 3 months before an ooph so that the ovaries are put to sleep first.

at my hosp they dont put your ovaries to sleep as its none done as a treatment for Br Ca as far as im aware but it is done fairly frequently as a prevention for Ov Ca. many of the women having it have never had any cancer and go from being fine one minute to plunged into the menopause the next minute but with a 25% to 50% risk of Ov Ca in their lifetime they consider it worth the risk.

as for taking tamoxifen you can continue on tamox or change to an AI. i stayed on tamox as figured better the devil i know and the hormone positive tumour i had was very small and low grade.

i already had meno symptoms from tamox and then later from chemo when i has 2nd tumour and was still in the chemopause when i had the TAHBSO but the hot flushes had improved a bit after stopping chemo but within 2 days of surgery i was having major flushing and still am… i figure the flushes are annoying but not life threatening.

i had a dexa bone density scan a couple of years ago and will get another at some point to check on my bone health but dont take supplements just eat dairy products and those high in calcium and do weight bearing exercises like walking.

im going to see my onc soon about HRT as iv been on a couple of study days and with my family history of cardiac probs and dementia i think its probably beneficial.

Lulu

hi i had oppherectomy 5wks ago. if anything i dont have as many hot flushes or teary days as i did before when on zoledex. taking tamoxifen. and starting to live my life again at last. woo hoo ! i must recommend a book by lisa lynch called the c word . its fantastic i couldnt put it down , you must read it.xx

Would just like some advice, have had rt mastectomy for grade three breast cancer 16months ago, have been taking Tamoxifen since, had a blood test which has shown that I am not metabolising properly. My breast surgeon has advised that I either have a bilateral oophrectomy or monthly Zoladex injections, has anybody elso been in this situation?