oophorectomy / Zoladex

Hi ladies,

Just wondering whether any of your / your onc have got some views on which one is better.

My bc is strongly ER+ and PR+, but failed miserably on Tamoxifen. My mum is quite keen on me going for oophorectomy - let’s cut off the supply of oestrogens completely just in case zoladex won’t work again. My onc is worried that oophorectomy is going to be permanent. If I find the menopause symptoms to difficult to cope (my onc’s worry, not mine. If I can cope with chemo, what else can I not cope with???), then there is no way back. So, my onc prefers zodadex and claims that it does the same job as oophorectomy (Is this true???)

I’m now caught in the middle of the arguments and not sure which one to go for. At the mo, I’m on FEC chemo, so can’t do zoladex at the same time anyway. However, was told oophorectomy can be carried out at the same time as chemo. (Is this true???)

My mum’s thought, which I think is very naive, was that once the oestrogens is gone, no food for cancer, so it will stop growing and dies off. It’s not that simple, is it? Otherwise, oophorectomy would be done quite often for hormonal sensitive BC. Fertility isn’t my concern, despite my young age and childless and single, however, that doesn’t mean I would like part of me take out without a good reason!

If any of you can help me weight up the benefits and risks of both of them, especially if you have gone through one or the other, please let me know. Thanks a lot.

xx

Hi m1yu

Wow that’s a difficult decision to make and I think from the sounds of it, you’re also pretty well read up on things too hence your questioning what your oncologist has said. I didn’t have hormonal breast cancer but due to my young age, I was put onto Zoladex injections to switch off my ovaries and try to preserve them whilst I was going through chemotherapy and this was whilst I was on FEC so I don’t understand the reasoning behind what your oncologist has said. My periods did stop so in terms of it working - it certainly did for me. My periods came back about 6 months after I finished chemo and Zoladex.

One other thing I do recall is that unless it’s essential, no surgery whilst on chemo as things take a lot longer to heal and also you are much more vulnerable to infections which can be much more serious as your immune system will have been knocked.

I know a few people who have discovered they have the faulty gene and have had preventative surgery (one had breast cancer) and her mother hadn’t had it but had the faulty gene. Both women had their ovaries removed. The one who had breast cancer had it removed after she had finished all her treatment.

Hope this helps you a little and maybe ask for a second opinion if you are not happy with what’s happening.

Ruby xxx

Hi Ruby, thanks for quick reply,

I don’t think I’m very clear on what my onc has said. What I meant was if I go for oophorectomy and then find the menopause symptoms to difficult to cope with, there is no way back. However, if I go for zodadex and then find it difficult, the injection can be stopped and other treatments can be tried.

Your point on infection is something that hasn’t been taken into consideration by me before. So, it sounds like that if I’ve decided to go for oophorectomy, it’s best to be done after chemo anyway.

I’ve been very happen with my onc so far but finding him a bit “too soft” if you know what I mean. He has respected my views in the past, so if I can gather enough benefits on going for oophorectomy, will push him to change his mind, but will need to be sure myself first… don’t want to regret afterwards.

Thanks, and hoping to get a few other replies

xx

PS. I don’t have any family history at all, so still don’t know why I’ve got it at such a young age! So the faulty gene don’t apply to me, that may weaken the argument of preventative surgery like oophorectomy.
xx

Hi m1yu,
I had an oophorectomy yesterday, as it happens, but am much older than you, at 51, and a normal age for menopause - periods had stopped during chemo but still had hormonal surges/cyclical symptoms. Rationale for ooph was that my bc is recurrent and strongly er/pr receptive.
I believe, from what I’ve been reading, that menopausal symptoms can be much harder in young women who have surgical menopause, which might explain your onc’s concerns.
sorry, zoladex is not something I know about, but I hope someone will come on here and discuss that.
I agree with Ruby that it would probably have to be an emergency for them to operate while you’re having chemo because of the damage it does to your immune system. I also agree with her that a second opinion or at least further discussion with onc/bcn might give you more information. I think you need further info to make such a decision
best of luck to you - will be thinking of you
monica xxx

Hi again

Just to say yes I hope somebody else does come along who can help you more. Having your ovaries removed is a big step and something that no surgeon would agree to lightly especially as you are young. Like I said above, the Zoladex did work for me as my periods stopped during treatment and have now returned. By the sounds of it, as you say there is no family history, you may have a real job trying to persuade your oncologist to remove your ovaries. Before I had my preventative surgury (mastectomy and reconstruction of the good side) I had to see a clinical psychologist to discuss the implications and the whole process took a long time.
xx

Hi
This is a bit of a side track - you say completely failed on Tamoxifen - can you tell me what you mean? I’ve been taking it since January and have no side effects. BC nurse says that indicates not being effective and as far as I can see oophorectomy/zoladex are the only alternatives. Seeing onc next week for first time since started tamoxifen so not sure what her view on all this is but I will ask!
Sarah

Hi Sarah,

I didn’t have an op to remove my lump, so it’s a bit obvious when I felt it growing again and a few small new lumps around it starting to appear. Called my onc and was sent for “urgent” scans and discovered progression and liver mets!!!

If you have an answer re oophorectomy / Zoladex after seeing your onc, please come back and let me know (sorry for being selfish). Thanks a lot.

xx

No problem - will let you know what she says. I’ve read that some oncs don’t recommend it since your body produces oestrogens from other sources (muscles I think) so doesn’t remove all the food source.
Sarah

Hi m1yu

When i was dx age 34 in feb 08 with 100% er+/pr+ (no family history), my onc put me on tamoxifen and zoladex but said that at any time i could stop the zoladex and have my ovaries out instead. 15 months later, this is what i did. I had keyhole surgery as a day stay patient in july 09.

I have never had any problems except a few mild flushes each day, and this has not got any worse since having my ovaries out.

Before i was put on zoladex i was given a bone density scan and will now have one every 2 years to check for bone thinning problems. However i have also been prescribed Adcal d3 which are a high dose calcium.

I am very glad my onc offered this op to me and it sure beats those injections! It means the main source of oestrogen (from the ovaries) has been removed. Obviously i still have a small amount of oestrogen from the adrenal gland and fat cells, but soon i should be changing from tamoxifen to femera which should take care of the leftover oestrogen.

It seems that each onc and each area has different ways of treating us. All the best xx

Hi m1yu and Sarah

I have experience of both, I had Zoladex injections whilst having my chemo in 2007. ( I had AC and Taxotere and was prescribed Zoladex in a ‘failed’ attempt to preserve my ovaries. )

I then had an oophorectomy June 2009. I actually didn’t find that ‘sudden surgical menopause’ brought on too severe symptoms. The surgery itself was very easy to handle, keyhole with minimal pain one overnight stay and very quick recovery. Bizarrely I had worse hotflushes/lightheadedness when taking Zoladex (although the chemo could also have been the culprit!) I was 43 at the time.

I did have one very ‘down day’ a few days later, when I cried all day, but then that passed with no further emotional problems. I haven’t had any further menopausal symptoms apart from a spreading waistline (however this again could also be attributed to Aromasin)

I don’t actually think that either treatment can be relied on to keep the cancer at bay, although in many people it does. Although my oncologist seemed to think that mine would be less likely to return with the oophorectomy, which is partly why I went down that route (I also had large growths on my ovaries, caused by Tamoxifen…a side effect many are unaware of!)

Unfortunately in my case the oophorectomy didn’t have the desired effect (although I could have just been very unlucky!) I too was 100% oestrogen + and highly progesterone +, so in theory the removal of my ovaries should have stopped the cancer returning…however it didn’t! and I was diagnosed with bone mets in my hip, and ‘hot spots’ in my neck and shoulder last week :frowning:

As a procedeure oophorectomy is OK and if I had to make the same decision again I still would have had it, I tried to lower my risk but unfortunately I didn’t!

Hope this helps in some way,

Take care

Nicky

Hi Nicky,

I’ve been following your bone mets diagnose (think I’ve posted as well), but didn’t realized you’ve gone through both oophorectomy and Zoladex!!!

I’m sorry to hear that neither of them had the desired effect and this is the kind of thing that’s at the back of my mind… would it actually worth the sacrifice. From my own research, oophorectomy is considered to have a greater effect, and it does make sense in a way. But oh my, I’ve learnt there’s nothing certain about this nasty illness.

Thanks xx

Hi everyone,

Having re-read your posts again, would like to add a few more comments & bump this thread up, hoping for a few more comments.

Ruby & monica: Thanks for comments re operate during chemo. Now I know at least I have a bit more time to think about it carefully before I make the final decision (I’m having my 2nd FEC next Wed, may have 8 altogether, but it’s more likely to be 6).

monica: thanks for info re menopausal symptoms in young women. It’s good to know that my onc’s concerns have some solid bases.

Sarah: I hope that Tamoxifen IS working for you. No side effects or very little side effects does NOT mean it’s NOT working (I believe there’s another thread about on topic). All the best with your appt.

lolly: your onc’s approach is great, just what I have in mind as a compromise if I can’t decided one or the other. I can start on zoladex and if I can cope with the SE (and it works!!!), will push for oophorectomy.

Thanks ladies for all your replies xx

The gyneacologist that i was referred to was pleased that i was already on zoladex as he said that you have to have at least 2 or 3 zoladex before an ooph anyway, so that your ovaries are switched off first. Dont know if others have been told this though.

HI,

I’m watching this thread with interest. If only having an ooph would then mean being drug-free for life but sadly I don’t believe this to be the case? I think for anyone pre-men like me, being put into a surgically imposed menopause still has many issues such as bone density loss plus there is still oestrogen circulating from teh adrenal gland.

I’d appreciate any comments from any other pre-men ladies who’ve successfully dealt with this.

Hi
Just to add my experience/s. I was dx with primary bc in 2003, strongly ER+ and PR+. I had WLE, rads and then Zoladex and Tamoxifen. I had really bad menopausal symptoms whilst on Zoladex (I was 41 at the time) but these more or less stopped once the 2 years of Zoladex were over. I really pushed my onc team for an oomphorectomy but was convinced by their ‘bone density/dying from a hip fracture’ argument. I had (at that time) a very low percentage risk of recurrence. However nearly 5 years after this dx and a couple of years after Zoladex was stopped I DID have a local recurrence which, on further scans, also showed up bone mets. I am convinced they grew after Zoladex was stopped and my periods returned. I have since had FEC chemo to shrink the new lump and act on my bone mets. After that I went back onto Zoladex so I could have A I’s as tamoxifen had not worked for me. I then insisted on an oomphorectomy/ablation and eventually had ovary ablation (by rads) a couple of months after my chemo had finished. My experience of the menopause since then has been fine and no-where near as bad as when on Zoladex, although I am of course 5 years older than when I had my 1st menopause!
My view is, if you really believe that reducing the effect of female hormones is a benefit to you and your BC you should be able to insist on having your ovaries removed. The argument for loss of bone density doesn’t really stand up when low dose bisphosphonates can be given and regular checks made. A I’s should also be taken as female hormones are still produced from fat cells etc (as has been said on here earlier), therefore you are unlikely to ever be ‘tablet free’. However, for me, one small tablet a day is better than the worry of all that oestrogen feeding my BC cells and also I don’t miss the big needle every 4 weeks for Zoladex!
Good luck with any of you having to make this decision, it’s a tricky one, but only you can really decide what’s best.
Nicky x

Just thought I’d add my pennysworth to this discussion. I had a strongly ER+ cancer diagnosed in December 08. I had WLE, chemo and rads then went onto to tamoxifen. I’m 42 and although my periods had stopped after the 3rd dose of chemo and I was having menopausal symptoms, blood tests showed that things were still active and I was having hormonal surges etc. I didn’t do well on the tamoxifen - lots of side effects that made me feel quite unwell. Zoladex wasn’t considered suitable for me because my blood pressure can be a bit tricksy and it’s known to affect blood pressure.

My Oncologist and surgeon were both very pro-oophorectomy and my Onc had mentioned a few times along the way during my chemo. When I discussed it with them they said that the main issues were re bone density (but that these could be counteracted by medication) and instant menopause. Regarding oestrogen from adrenal glands and fat cells, aromatase inhibitors deal with that (hopefully!). Having weighed it all up I decided it was a no brainer and to go for it and had my oophorectomy in February of this year.

I had a bone density scan shortly before that, which showed excellent levels as a starting point/baseline and I will be scanned every 2 years to ensure things aren’t deteriorating. If they are I will be given the appropriate medication to sort it.

So far as the operation was concerned it was an absolute doddle - keyhole surgery, I had the op at 11am and was home by 7pm. No great pain, just sore for a week or so. Since then I have started taking Femara and, although it too has its side effects (it’s certainly not just a Smartie!) - stiff joints and dry lady bits being the mains one for me - I’m doing ok on it and feel much better than I did on tamoxifen. My Onc has prescribed pessaries to sort the lady garden issue which are apparently very effective, and the stiff joints - well it’s not too bad and I never thought I would get away with a life without annoying side effects if I want to keep the BC at bay.

The instant menopause hasn’t been too dreadful - I did have a spate of loooooads of hot flushes for about a month, and I do still get a few a day but they are tolerable and I’ve been offered hypnotherapy to see if that alleviates things. Some fairly fierce mood swings initially too, as somebody else said I did have a day or two when I was inconsolable, but that soon settled and I’m just my usual self now. Who doesn’t have mood swings eh?!

So all in all I’m glad I did it. No regrets here at all. Hope that helps.