hello all, diagnosed 06, mastectomy, chemo, radiotherapy and tamoxoen for 2 yrs. my oncologist changed me to exemestane and a 12 weekly injection of zoladex to stop my ovaries working. he has now suggested ovary removal as i have so far tolerated the menopause ok. are the menopause symptoms after this surgery better than before? also can anyone suggest any non hormonal treatments i can try? this is my first time on a site like this so i hope to connect with anyone in the same boat as me…kind regards sue
Hi Susie,
No experience of the oopherectomy op and after i’m afraid.D/x jan 2008 at 44,mastectomy & reconstruction & 6 x FEC (no rads as it was the radiation i was given for Hodgkins Lymphoma at 16 that caused the BC).I was having periods until 1st chemo then all stopped & bloods showed post menopausal so was taking Arimidex.The rapid onset menopause was worse the chemo which i tolerated well but my saviour apart from high dose evening primrose has been THE LADYPACE MAGNET!Best £20 i’ve ever spent.For the past month i have stopped using the magnet as flushes haven’t been too bad and sleeping better but have started a period which is bad news as ER+So i’m sorry for hijacking your post Susie but has anybody else had same thing happen?Hope you try the magnet as apart from sticking to Sainsbury’s trolley its fantastic!
Best wishes Karen
Hi Susie and Karen
It’s been suggested that I should consider ovary removal too, but I’ve been referred for ovarian screening at the moment - no appointment yet. My mum had ovarian cancer 2 years ago and I’ve just had bilateral Mx. Had a friend over today who’s a nutritionist and was looking up side effects of and alternatives to Arimidex which I’m starting (and am not looking forward to menopausal symptoms again). She found a post on the internet by someone who decided against Arimidex or other hormone treatment and managed it with diet. It included at least 5 cups of green tea per day and various other things… I’ll try to find it, or ask her where it was and let you know.
Karen - what’s the Ladypace Magnet? I’ve never heard of it but think I should have one!
River x
Hi All
Just to let you know my experience of an oophorectomy. The surgery was far better than I had ever anticipated. I had no pain at all! Not really any discomfort either. I had tiny little incision marks. I was only in for one night and sent home the next morning. I was encouraged to have 2 weeks off work, but felt a bit of a fraud! as I felt perfectly normal and was walking about as normal.
The following week I had one day, when I felt very tearful and had a few hot flushes (I am 43) then have had NO side affects at all since then! I was changed from Tamoxifen to Aromasin, which apart from causing some aches and pains in my legs, seems to suit me better.
I am really glad that I had the op!
Any further questions just ask!
Nicky
Hi
Just to say that I’ve been using the ladycare magnet for the past month and it has done absolutely nothing - another complementary therapy I will assign to the quackery drawer. Great if it works for you but a waste of money for me. So far nothing I have taken has had any effect on the hot flushes, including venlafaxine, evening primrose oil, starflower oil, sage capsules and various minerals. I’m not allowed to take anything else. I just hope the flushes will go away of their own accord at some point.
Helen.
Hi Nicky and others. Can someone tell me what the reasons are for having ovaries removed, I’m curious about this. My tumour was er+ and pr+ and I’ve recently started tamoxifen, but have been wondering about ways to reduce the impact of hormones eg diet and bodyweight, removal of ovaries etc? I haven’t had a period since second cycle of chemo, and I want to do everything I can to prevent recurrence. Can anyone enlighten me please re ovaries? Thanks.
Dear scottiedog,
You may find the Breast Cancer Care publication on “Ovarian Ablation” useful. You can download a copy by clicking on this link:
breastcancercare.org.uk/upload/pdf/ovarian_ablation_june_2007_0.pdf
I do hope this is helpful. Don’t forget you can also phone our helpline for information and support. They are open from 9.00am-2.00pm on Saturdays and 9-5 on weekdays. The number is 0808 800 6000
Very best wishes
Janet
BCC Facilitator
Hi Scottiedog and others
I too had ER+ and PR+ BC. I was asked by my consultant to consider ovary removal, after my tumour was considered to be 100% oestrogen positive, (she reasoned that by removing the primary source of oestrogen production within my body I would possibly reduce the chance of it coming back! - I had 10 lymph nodes infected so have to face the possibly that it could come back!)
I did nothing about it for the first year (although I realised that I had to make a decision. Then I started to get pains in my abdomen and was referred to a gynaecologist. I had various scans which showed ‘growths’ on my ovaries and badly distorted fallopian tubes. So from this point the decision was really made for me. Blood test showed that it was unlikely to be ovarian cancer. I had the surgery and all the results fortunately came back clear.
One point of relevance to this thread is that at first, before the bloods came back the gynaecologist was considering that it could be ovarian cancer, due to the link between this and BC. I read into this that having 100% + BC increased my chances of getting ovarian cancer at some point in the future.
Another point of interest was that the gynaecologist told me that it is not uncommon for Tamoxifen to cause growths and swellings on the ovaries. I am not sure that many of the people taking Tamoxifen are made aware of this.
I hope that my experiences can be of help to you. In my situation it was the best course of action, but obviously everybody is different,
Regards Nicky
Thanks Nicky for your comments re ovaries and Tamoxifen etc and also Janet from BCC. This is all useful and interesting information which I need to look into further and question my oncologist about. So much information out there, so many different opinions / possible options, it’s mind-boggling! ‘Knowledge is power’ as the saying goes though, and this forum has proved invaluable in arming me with that. Best wishes to everybody for the best treatment and best outlooks that we all want. I’m keeping my fingers crossed that I can get on with my life now after 8 or so months of treatment in 2009. As Groucho Marx supposedly said to his host when leaving a party, “I’ve had an absolutely marvellous time, but this wasn’t it”.
Hi all have recently had a total hysterectomy due my BC and my mums ovarian cancer and Tamoxifen …had growths on my womb and ovaries no option to remove as would almost certainly become cancerous if they arent already …waiting for lab results as we speak x
I’m very interested in this thread as my Mum has recurrent ovarian cancer now. She was 69 when diagnosed 6 years ago. It came back 4 years ago. My E+ and P+ were 8/8 which I presume, sorry for sounding thick here, means they were 100% positive? but the Ksi67 was only 5% (if I have the initials correct) .My Onc hasnt mantioned anythign about oophorectomy. I’ve been told it was a very small-1.6mm tumour, no spread, good margins therefore I have little chance of it returning. I’m wondering whether to push for ovarian screening at least? What were all your criterias for having the oophorectomies if you dont mind me asking?
Ruth
Thank you for starting this very interesting and thought provoking thread. Its made a decision I have to make so much easier - thank you ladies:).
Prior to me starting chemo (just about to have 3rd FEC - hasn’t been to bad so far) I was asked by Breast Surgeon and Oncologist to consider Oophrectomy as I’m ER+ once chemo and 18 sessions of rads are over (also have to commence Tamoxifen for 5 years). I’ve just turned 45 but had a hysterectomy nearly 4 years ago so have not had to deal with periods as a result and it did give me a better quality of life until my bc dx.
Had I known back then that my ovaries were going to ‘feed’ the primary bc I was diagnosed with in October 09, I’d have happily said take the lot and dealt with the symptoms of early menopause, brittle bones etc as required and at least would have substantially reduced the chance of developing a primary bc. And if having an oopherectomy reduces the chance of developing ovarian cancer (particularly as having had the hysterectomy - any symptoms are even more difficult to recognise) for me it is a no brainer it has to be done.
Best wishes and good luck to you all in any decision making you may have - these forums are a life line and I’ve learnt so much from so many.
Regards Leigh x
Hi, I’m really interested in this post since I have been reading about oophorectomy versus tamoxifen. I’m not really very keen to start tamoxifen for a number of reasons and have been wondering whether oophorectomy would simply be a more straightforward way of reducing oestrogen in my body. I am 50 but not menopausal yet, and was Dx in Nov 09 with E+ IDC. I still haven’t seen oncologist yet as my margins are not yet clear after 2 WLEs (the 2nd last week), but I have raised the possibility with my surgeon of oophorectomy twice. On both occasions she said that oophorectomy was regarded as a very old fashioned procedure and they didn’t offer it. Yet I have seen it mentioned in various up to date publications, it features on Ajuvant!, and obviously lots of ladies on this site have had the option. I’ve noticed in other forum areas how practice and advice seems to vary across the country - I’m wondering if this is happening with oophorectomy (by laparotomy)? I’m having treatment from a smallish county hospital - is it different in the Marsden or the Christie?
Thanks for comments
Meggy
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Hi Ladies
Just thought of something that needs adding to my previous post, for those of you wanting to make informed decisions. I had no problems with the surgery itself, my operation was relatively pain free and recovery time was really quick. I haven’t really suffered from too many side effects. However I have recently been told that I have Osteopenia (i think that’s how it’s spelt!) which is bone density lower than my chronological age, often considered to be a pre-cursor to osteoporosis!
The consultant at the orthopedic hospital (I seem to have visited most departments in the last few years!!)said that this is as a result of having gone through a menopause at the age of 40 (my periods never came back after chemo!)and is quite common. I have to take twice daily calcium supplements and a biophosphorate treatment weekly.
As I am sure that you will all be aware, there is no ‘right’ course of action, as everything seems to have further consequences in some form or other.
Any other questions about the procedure itself just ask or PM me,
Regards
Nicky
Hi, I’m also weighing up the pros and cons of an oophorectomy at the suggestion of my onc.
I have secondary spread to liver, lungs and bones and am currently taking Arimidex, having monthly Zoladex implants and bisphosphonates. Chemo stopped my periods but blood tests show me as peri-menopausal.
Going with the surgery will mean no more implants but to continue with the Arimidex until it stops working.
Does anyone have any idea of the effectiveness of the Zoladex implants in shutting down the ovaries as compared to the total effectiveness of having them removed?
Bad Fairy x
Hi Bad Fairy, last year before my chemo started, I was offered a clinical trial for Zoladex - they wanted to see if Zoladex was effective in temporarily shutting down the ovaries during chemo, and thus protecting them from harm, so that they could hopefully restart and continue to work normally after the chemo ended. From this I assume that at least some of the uses and effectiveness of Zoladex in breast cancer are not yet conclusive. (I chose not to participate in the trial). I’m now confused about it, as my tumour was er+, so I would have thought that anything that switches the ovaries off (like chemo) was a good thing for me, (I’m 45), and anything that switched off, but possibly protected them (like Zoladex) was not, unless I was on it permanently. Sorry this probably doesn’t directly answer your question, but I thought may shed light on a possible lack of conclusive answers about the use of Zoladex.
Hi
Just thought i would add my experience to this. I had low grade cancer breast removed in 2005. Outlook was great and i did question about having my ovaries removed as i has oestrogen feed cancer. The reply came back no need. 18 months later it had returned in the back of my neck…needless to say at that point i had my ovaries zapped rather than removed. Hinsight is great but if they are recomended it i would go ahead.
I must admit i have zero sex drive which unfortunate for my husband bu…i am still here and i feel that is a small price to pay. Being crashed into the menopause for me was awful but it is different for everyone. As for the side affects of arimidex you will find a lot of people have terrible ones but again that varies. YOu can try and if the drug causes you too many problems just ask to change…i did.
Unfortuantly you have to take what course is right for you and do not be affraid to say that something is not working and say you want to change drugs. I was stupid and stuffered for over a year with side affects. Since i have changed i have never looked back.
Good luck and let us all known how you go.
It does get very confusing doesn’t it! My understanding of ER+ is the same as yours Scottiedog. If it needs oestrogen as “food” then bulldoze the take-away! Admittedly that’s easy for me to say as I have completed my family (I’m 40) and having secondaries I wouldn’t consider having more children anyway. Like you I would have questioned why I might want my ovaries “switched on” or protected in the future.
To keep my ovaries switched off without surgery I suppose I’d need to stay on the Zoladex. But that raises the question, because it’s relatively new in BC treatment, will it interact with future drugs or chemo that I may need?
Surgery would seem to be the better option, although surgery carries its own risks.
Have to say that the side effects of the Zoladex and Arimidex have settled. I, like many others, get stiff joints if I’ve been sat or stood still too long and have to shuffle myself into action in the morning. Other than that, the hot flushes have dimished (less now than when on chemo). My mood has stabilised and I don’t whizz between extreme highs and lows anymore. I’ve been taking these for 9 weeks and my only concern is that they aren’t working properly because I’m not suffering. (Daft I know!)
The reason I’m questioning the chemical versus surgery option is really to do with time and quality of life. If I have limited time left do I want to give up some relatively “healthy” time recovering from surgery if the Zoladex will do the same job. It’s been very helpful reading about others quick recovery times on here, a few days I can do … 6 weeks is a different matter!
I had oophorectomy at age 36 after completing surgery, chemo and rads. I still had to take tamoxifen for 2 yrs and about to start an AI for 3 yrs.
The ooph op itself was very minor. Very slight discomfort after. It was a keyhole op so not very invasive compared to other surgery. I left hospital that evening and just took it easy for a week or so.
The main problem with ovary removal seems to be the long-term effect on your bones, particularly a problem if you are nowhere near menopause age. However, I reasoned that this can be monitored and treated to stop it getting worse. Also, it is obviously permanent.
Removing my ovaries (rather than having the gosrelin injections) meant that I could then later go on to have tamoxifen followed by AI which the dr said was a better treatment overrall for hormone receptor positive bc. (this might or might not be the case for other people).
Another factor was that I only had to go through the menopause once and avoided two years of monthly injections of goserelin.
Oophorectomy wasn’t something that was automatically suggested to me. However, after I raised it and asked qus about the pros and cons, they were happy to answer these qus and then refer me for the op.