Hi everyone
I was dx in November with primary and secondary cancer at the same time - mets are in my bones. I am on anastrozole daily tablets, zoladex injection every 4 weeks and Zometa every 4 weeks to strengthen bones.I am 45 and was pre-menopausal.
I have an appointment on 17 March to start the process of deciding whether to have my ovaries removed and wondered what people’s experience of this might be? The side effects to the treatment have been pretty minimal but I am aware of an increased ‘woolly’ head and my emotional state is definitely being effected by the change to my hormones - I have really struggled this week, feeling very low most of the time and I am worried that this will continue and get worse. I know it is very difficult to separate out what side effects are attributable to which drugs but my instinct is to have my ovaries removed in the hope that some of the side effects might improve in the long term with the removal of the Zoladex from my treatment.
Any thoughts or experiences would be really welcome
Helen x
Hi, I would have the operation. I was diagnosed, primary and secondary together too, in 2003. I feel well. Had years of the monthly injections to keep me in the chemical menopause but a couple of years ago I was diagnosed with a single met to each ovary. One ovary now shows on CT’s as normal and the other is mostly a cyst so my treatment has kept everything in check but in your shoes and with hindsight I would opt for removal. Best wishes…x
Hi Helen
I had zoladex and tamoxifen after my primary in 2003, I was 41 at the time so pre menopausal. This combo put me immediately into the menopause and I suffered really badly with hot flushes and aches. After 2 years zoladex was stopped, as per my treatment plan, and some of those side effects definitely stopped or got much better. Unfortunately my BC came back in my bones in 2008. After chemo, and knowing tamoxifen had stopped working for me, I went onto zoladex and Arimidex, like you. I didn’t want to keep having the zoladex so opted for ovary ablation (with rads) mainly as the key hole op could have had complications for me. Haven’t regretted my decision at any time. There are quite a few ladies who have had the oomphorectomy so you may get some answers later or tomorrow.
Nicky
PS just seen Belinda’s reply, as we must have been posting at the same time.
Hi,
I was diagnosed with primary and secondary bone mets in July 07 aged 42. Had chemo, mx and rads then tamoxifen but swopped to zoladex and arimidex to see if side effects would be any better. I’ve been on that combo for 3.5 yrs now and side effects are awful. Had to go on prozac to reduce the SEs. I did ask about ovary removal but both onc and surgeon said it wouldn’t make any difference for me. I’m on zometa too and again have been on that for almost 4 yrs. For the most part I’m stable and hope this treatment keeps me like that as long as possible. I’m actually just waiting for a second mx to balance me up by the way.
Liz
PS Belinda - how long did you have the zoladex for roughly and were you having arimidex or another AI and were they directly linked with the ovary mets??? Thanks
Hi again Helen…I should have added the wooly head factor…I’ve always put it down to the sudden plummeting into the menopause. Either by injection or removal of the ovaries we miss out on the usual slower route. And you’ve only just been given this huge shock of your diagnosis. It is still early days for you, do give yourself time to adjust to the shock of being diagnosed stage 4 from the very beginning. I felt in shock for ages. It’s taken me years to find a way of living with this…x
Hi Liz…as I was diagnosed by my fractured hip I was immobile for a few days, in hospital, waiting for a hip replacement. During those few days, I think, I developed a DVT which travelled to my lung. This then resulted in 6 months of Warfarin so to help prevent bruising I was given Prostap injections instead of Zoladex (it has a finer needle) but it works in the same way and is often given instead of Zoladex in the States. I then had just over 18 months of Tamoxifen and I had really low markers during this time but when it started to be less effective I was changed to Arimidex and it gave me no detectable activity for just over 4 and a half years before starting to fail. I was then switched to Aromasin which never worked and was pulled after 2 months. I was still having monthly Prostap all this time and 3 weekly tumour markers so was monitored really closely. Then had my first chemo, I’m still on it and a CT showed up the single met to each ovary. I had no symptoms, still don’t. Prostap had been stopped as it was thought I’d no longer have any periods on chemo…I was in my late 40’s. I did however have a couple of erratic periods. I know lobular cancer can often travel to the ovaries but I don’t have lobular and when I had this progression my bone mets were all healing, I had no bone progression anywhere. Was so shocked but, same as everyone here, I got my head around it and as I mentioned in the last posting I now have one ovary which is mostly a harmless cyst and the other is showing as completely normal on CT scans. Sorry for the ramble, I don’t think the Tamoxifen or Arimidex were linked to the spread…perhaps it was the short time I was on Aromasin although it was stopped really quickly and even then my markers were only just out of the norm for anyone without cancer. I have since read it’s not unusual for random mets to be picked up in those that have been living with cancer for years. x
Hi Helen
I had Zoladex & tamoxifen after my primary diagnosis in 2002 (age 37) - I stopped Zoladex after 3 years as I was finding SE’s difficult but then got a secondary diagnosis (in bones) in 2006. At this time I had my ovaries ablated with rads at the same time as zapping my mets in the hip and spine. With hindsight wish I had done it sooner as I don’t know whether the time without Zoladex was when my secondaries took hold. Since mets diagnosis had 12 months on Aromasin and then when that stopped working 5 years on Faslodex which kept everything stable (+ me feeling really well) til this January when scans revealed further bone mets and enlarged lymphs so now on first chemo.
From my experience I would recommend removal/ablation.
Hope all goes well whatever you decide.
Best wishes
Smartie x
Yes, I agree Smartie.
I think my mets grew once Zoladex was stopped, as the local recurrence that was also dx at the same time wasn’t there 12 months before. I would also, in hindsight , hae had ablation or removal after my primary dx. Also my onc had said I would be menopausal after my primary treatment but as soon as Zoladex finished I went back to being pre menopausal, periods and all. This huge resurregence of oestogen couldn’t have helped.
Nicky x
I had my ovaries removed at 35 when I had an inoperable regional recurrence while on Tamoxifen. I was very much pre-menopausal - my periods only briefly stopped during chemo, came back shortly after and continued as regular as clockwork until I had my ooph.
I went for the ooph as I didn’t want to rely on a drug putting me into temporary menopause, as I was concerned it might fail me as Tamox had. Also, given my age, I felt that Zoladex would only put off the inevitable and that I would have to have an ooph eventually anyway. I also have quite a strong family history and wanted to get rid of the risk of ovarian cancer, so didn’t want to go for ablation by rads. My onc agreed with me. And as having children was no longer an option for me, I felt like what was the point of keeping my ovaries anyway when all they were doing was causing trouble?!!
But that was my personal decision, of course, and we’re all different. I hope you come to the decision that’s right for you. Good luck, Angelfalls xx
P.S. My understanding is that the SEs are due to the menopause, so I imagine they are going to be the same whether your menopause is chemically or surgically induced. Although I have no experience of Zoladex, so I’m sure somebody will correct me if I’ve got it wrong… ;o) xx
Hi Angelfalls
Unfortunately I have had both, so, 2 menopauses! One is enough believe me. I felt much worse on Zoladex and far less side effects since my ablation, but I am/was closer to my natural menopause age the second time around. However I did read somewhere, a few years back, that the SE’s are worse on Zoladex as it is ‘tricking’ the Pituitary gland to stop producing oestrogen rather than working the way that a menopause does. However I don’t know if studies have since shown this to be the case.
Nicky x
Thank you everyone for your comments and thoughts. I am definitely going to push ahead with the oophorectomy if I can. I know there is no guarantee that the side effects will be any better but I would prefer to go through a natural menopause rather than a chemically induced one I think and at least it will be one less drug in my system.
Best wishes
Helen