Hi I’ve just joined and hope someone can offer some advice. I was first diagnosed in 2007 and underwent a mastectomy with immediate reconstruction. I was started on Tamoxifen for 5 years and Zoladex for 2 years. Three weeks after stopping the Tamoxifen after taking it for five and a half years in the end, i found a lump in the reconstructed breast which turned out to be a recurrence. I had a lumpectomy (wide local excision) and 23 sessions of radiotherapy. I’m now on Letrozole, as the oncologist said the Tamoxifen had obviously stopped working, and the Zoladex injections every month this time for 5 years as I’ve not gone through the menopause yet and Letrozole can only be given to post-menopausal women, hence the Zoladex all the time I’m taking the Letrozole. I hate having the Zoladex injections. I find it a pain going to the GP every month to have it and I hate the way it makes me feel. I seem to have settled down on the Letrozole now but have more side-effects on this than with Tamoxifen and some days I just don’t feel “right”. Anyway, my oncologist has referred me to gynae to have my ovaries removed and I saw him last week. Initially, I was keen to have this surgery but when I saw him and he explained the small risks involved ie damage to bladder or bowel, major blood vessels and nerves, i"m wondering should i have this surgery just for the sake of finding the Zoladex an inconvenience! The surgeon has told me to go away and think about it and now, having discussed it with my husband and thought about it more, I’m thinking that obviously the oncologist wouldn’t refer me for this procedure just because I don’t like the injections, it must decrease the risks of recurrence or ovarian cancer? I was told i wouldn’t feel any better or worse than i do now on Zoladex once i’ve had the surgery, that it’s done laproscopically as a day stay with 2 weeks off work if all goes well. I was asked if I wanted the ovaries removed after my initial diagnosis but declined then as i couln’t face more surgery at that time. I guess the fact that i’ve been asked again must mean it’s better to have it done. Has anyone been through this and had the same worries I have? Sorry if I’ve waffled on.
Hi beaudiddley
i had my ovaries removed in January, 2 things swung them to decide this was best option
1 my periods were returning and therefore hormone level was higher
2 I had cysts that were not going away and changing
I was a bit shocked when gynae suggested this, then thought , actually they’re right as it decreases my recurrence rate and stops the worry of ovarian cancer.
the op itself was easy and other than uncomfortable bloating after , there wasn’t too much pain.
now I have painful joints and moods wings but I think this is as a result of the chemo and tamoxifen and perhaps aggravated a bit by lack of ovaries. (I have ovaries and tubes removed)
the other side is that I no longer have any concerns about anything going wrong down there and I no longer have any pain so I am glad I went ahead with it. My flushes are no worse than they were before.
it was a big decision, not family wise as I have all the children I want (would have been horrified if I fell pregnant!) but it just because I was losing yet another bit of my body.
nb there is no genetic history for me.
good luck deciding & hope it goes well if that’s what you choose.
Hi Beaudiddley
I had my ovaries out in 2008. I’d had my children, didn’t want the hassle of Zoladex every month and took the advice of a gynae friend of mine who told me to ‘just get rid of them’. I was also on anastrazole and I think the combination of this medication and being plunged into an enforced menopause certainly made things tough for the first couple of years. I know everyone has different se but my main one was painful joints - felt about 90 most of the time. But things did get easier and I don’t regret my decision at all. Surgery was very easy - quick op and in overnight.
Hope this helps.
Hello beaudidley,
Sometimes I think its harder when we have a choice in specific treatment decisions and it canbe hard to work out what is ‘right’ for you as it is so individual.
I had my ovaries and fallopian tubes removed to reduce my risk of developing ovarian cancer as I have a brca mutation and had had breast cancer twice. Like you, was very apprehensive about the risks - though they are small when weighed up against the cancer and then all the treatment. The op is key-hole surgery and I think you would find it very easy in comparison with what you have been through.
The bigger dilemma is managing the menopusal symptoms- I know of some women -pre-menopausal- who are given zoladex when contemplating this surgery as it is meant to give an idea of what any menopausal symtoms are, as of course once your ovaries are gone, that is it! Of course, for you, you have been on tamoxifen so it might be worth trying to find out whether you could expect any possible symptoms to be the same or worse, and then balance this against how you feel about the zoladex injections.
I should add that I had triple negative breast cancer both times, so I had chemo but I thought it might help to have another vote of confidence in the actual surgery, and some general feedback.
Good luck with your decision.
Rattles
Hi beaudidley
As well as the support and information you are receiving here you may find it helpful to read the BCC booklet ‘ovarian ablation and suppression’. If you would like to read this on line or order a copy just follow the link below:-
www2.breastcancercare.org.uk/publications/treatment-side-effects/ovarian-ablation-suppression-bcc27
I hope this is helpful.
Best wishes Sam, BCC Facilitator
Hi beaudidley, our experiances are not the same, but overlap. I had mx with immediate recon, chemo, rads, 5yrs tamoxifen after diagnoses in 2004. Due to many and varied complications, that episode ended in 2010. I recently had double mx as I had recurrence in recon side and 3 new tumours in previously unaffected side. All were grade 2 ER PR + up to 27mm. I wasnt referred to onc, just told by breast surgeon my only option for treatment is another 5 years tamoxifen, as I am not menopausal, yet. I am so interested in you saying tamoxifen had stopped working! I feel strongly that was what happened to me, 2 and a half years off the tamoxifen and I had four tumours, to me, that means is didn’t work. I have asked for an opinion from an oncologist, which will be wed this week. My GP suggested an oopherectomy and aromatase inhibitor or zoladex with tamoxifen. Not sure what’s best, but I want to be sure about treatment as this is second time around as I’m sure you understand how that feels. Po. X
I am having zoladex injections, but my onc specified that they should be a higher dose every 3 months. This is much less of a pain than having to go every month. If you decide against surgery, could you request 3-monthly zoladex? The nurse at my GP practise does mine.
Hi JCJ, I understand that Zoladex is not licensed for the 3 monthly injections for breast cancer, I think it is for other cancers but not BC, but some GP’s are insisting on this, may be worth making some enquiries,
Take care
Lydia
Thank you for all your responses. I’ve made my mind up now and will go ahead with the surgery. I think it is like you said, Rattles, it’s having a choice that has made me dither this time. There was no choice with the other surgery and treatment i’ve had! And i feel that clearly the small risks involved far outweigh the other risks if I didn’t have it done!
Po, regarding the Tamoxifen, my Oncologist said that in some people the body kind of gets used to the Tamoxifen and cancer cells start to find ways to “get round it” so it’s not as effective. I hope it goes well for you when you see the Oncologist on Wednesday.
Hi Beau, thanks for that. If I only have the option of another five years of tamoxifen I will feel as if I am holding my breath, just waiting for it to return, anything else would be better than something I have no faith in. I hope your surgery goes well and maybe you will be living with less side effects? Hope so! Po
Hi snap hun I’m going though the same as you do I have an ovaries out or stay on Zoladex??
I was diagnosed in 2013 with stage 3 breast cancer aggressive had a lumpectomy and some lymph nodes removed to find they had not got it all to then go though another operation …
Had that and they cleared my lymph nodes out to find 6 cancerous had 6 rounds of chemo and 30 sessions of radiotherapy was on tamoxifen plus herceptin for a year then was put on letrozole and zoledex for 2 yrs came off zoledex this april, end of September bad pains and a bleed …saw consultant back on zoledex …so now do I stay on that and have still taking letrozole …but consultant said on it for 5yrs or long but my bone density has reduce on calcium tabs and something else for that …so do I op for the surgery?? Like you it’s hard choice?? I don’t know about you wich best to do?? What are rises etc which is safer ?? I thought about surgery as know overies cant work and feed my cancer so it will not come back… injections every 4 weeks still a rise …both work but its knowing what is best??? Its a tough choice but one that only the individual can choose I guess …good luck in which one you choose … any advice on the risks after surgery or which way to decide I think we both wil be grateful …sorry I waffled on too…xx