Hi, I wonder if anyone has had to make this decision and how they felt about it, I was diagnosed Feb 05 age 37, grade 3, 2 lymph nodes with cancer, 5cm tumour, er+ hr2-, had mast, chemo and radio, 3 years after being on tamoxifen I am still pre-men and my onc has recommended that I have an oopherectomy and then change to arimidex, he said it would improve my long term survival by 10%.
I really dont want to have this operataion because I am worried about long term effects of early menopause, also although it may seem trival I’m also worried about getting fat and looking old before my time. Everyone says I’m mad not to have it done but its hard to explain about how I feel.
Any advise or experience of this would help please
Hi Jojo
I wanted ovary removal after my primary dx but was eventually convinced by my team not to have it done despite being very hormone positive and aged 41 no where near the menopause. It seems to be a grey area as some oncs recommend it, others don’t. However I went on to develop bone mets after 4 and a half years and still think the sudden hormone surge after Zoladex had finished is what caused them. I have now had my ovaries ablated by rads so that I can be on Arimidex or another A I. Tamoxifen had stopped working for me during the time between my dx’s. If you’re worried about after effects the main one is bone thinning but this can be monitored/treated. I don’t know if you would get any worse side effects than having had Tam for 3 years already. I certainly get no ‘real’ hot flushes - and believe me I know what a real one is! Also A I’s are not known to have the same SE’s as Tam and one SE is loss of appetite whereas Tam is increased appetite.
Hope this helps and feel free to ask me any other questions.
Nicky
Thanks for your response, sorry to hear you have since developed bone mets, I know so far I have been lucky, I have seen my surgeon today who has said I can stay on tamoxifen for another year before having the op, both the onc surgeon and gp have said I should have this done for long term survival, still seems a bit of a lottery though.
Hi, just to say I was diagnosed this time last year and was grade 3, 1 node involved, er postivie, pr positive and her 2 negative - due to some family history even though 35 offered me oopherectomy and I chose it as wanted to do whatever I could - this was rigt decision for me as was diagnosed with BRCA1 gene - what I can say is that the side effects of the op and the arimidex arent as bad as anticipated, i am worried about the bone thining as due to back pain had a bone scan and some degenerative areas already without the effects of pills but was given bone strengtheners. Decision has to be yours but as yet havent put any more weight on than during chemo as trying to be more healthy.
Hope this helps and wish you the best of luck
Lisa
x
I’m normally a very logical person, and I know its the right thing to do but just finding so hard emotionally to do, at least I have another year to come to terms with it, glad to hear that your feeling well, as with most things that we fear, I think it is the fear of the unknown, ie the side effects it may bring.
No problem Jo, I found it really ahrd to do to as felt like I was getting rid of something healthy to end up with side effects, its like thinking about recon, dont want to put myself through it but probably will.
Hi, I commented on a thread regarding this quite a while ago (god only knows where it is with this new set up, but if you look around you might come across it, and may be helpful to you) anyway I had oopherectomy in December, I was put on Zoladex injections with Femara, whle my op date came through. I asked my onc for the op, as I was only 36 and I asked what would happen after the 5 years on Zoladex, she said as I would only be 41 then my periods might come back, might not. I asked for the op and she agreed instantly and refered my to gyne. had the op done 3 months later. I have no regrets about having it done. The op itself was a lot more difficult to get over, worse, in my opinion then my mast. Pain was so bad that I didnt get off the settee for about 3 days. The side effects, for me have been quite minimal, I do have some mild hot flushes and have to sleep with my feet out of the bed as they get so hot and I found that I had no patients with my kids at all, so after visiting my GP he has put me on mild anti-depressants which have helped loads, and I feel quite balanced now. LOL that makes me sound like a nutter normally doesnt it??? I dont think I am, and was only put on them as couldnt have any HRT.
To sum up, I do not regret my decision to have them removed, for me the side effects are quite manageable, but everyone is different. I opted to have them removed in an attemt to be here for my kids, my onc and I dont ever talk about percentages so I dont know what it has increased my chances by, but I personally would do it again for a 1% extra chance let alone 10%. Good luck with your decision. And on a personal note I hope that it has increased my chances by 10% too!
Ask me anything else you need to know about this op, and I will try to answer them from my experience, that is,providing I can find this thread again!
If you have side effects from these drugs, I did too - and went off to France to find out how to stay on them, as all help I got from nurse was her peeling off more skin from the skin lesions I got - and Oncologist just said “do you want to come off the drugs”.
Anyway, French have lots of lovely clinically trialled products that really help - all mentioned on after-cancer.com
Re: oopherectomy and arimidex vs staying on tamoxifen
Commented by Ali on 06 Feb 2009 16:50
I have put on a lot of weight since being on Tamoxifen. My Stomach is bloated . My diet is very healthy but I just can’t seem to loose the weight. Has anybody got any suggestions? I would really appreciate some help. From Ali
Lolly I had it done by keyhole, wouldnt say it was painless but just had anti inflamatories and paracetomal, was up later in the day bent over a bit but day after much better and travelled 3 hrs home in parents car, was a bit tender and sat up on end of sofa a lot rather than using stomach muscles to lif self up. all in all would do it again in a flash to help my odds
Good luck.
New user - sorry no answers re tamoxafem, might be better starting a new thread or searching through some of the others
hi lolly
yes it was keyhole and was told it wouldnt be too bad (but then the gyne is a man and he’s never gonna know how bad it actually is is he!) HE LIED, is was painful, but I would do it all again to improve my chances. It was just a week in my life thats all. Was in hosp less then 24 hours, but, in my opinion should have stayed longer, but they try a kick you out asap dont they.
Ness1