How many ER/PR+ have had ovaries out?

Hello

I’ve been reading in the hormone section but thought I’d post a new thread as I can’t really get a good idea of how many premenopausal women with hormone receptive cancers have an oophrectomy or ovarian ablation.

I’ve had ACx4 Taxx3 and am have been on Tamoxifen for 4/5 months, age 39, am just having my second period. I don’t know what to do. I feel my onc was rather dismissive when I rang to tell him my ovaries hadn’t packed in after all, said I shouldn’t worry but if I wanted to do everything possible to stop the cancer growing again (assumption is there is some left in me, I think, as it was a recurrence) I should have Zoladex for 2 years followed by ovary removal. He said there wasn’t much evidence to support this course of action, but in the rest of Europe, oophrectomy was standard for premenopausal women. My hormone scores were both 7/8, by the way.

Can I ask what you’ve done, if you were given a similar choice? Or what did your onc recommend? I feel great at the moment and am loathe to put myself up for more SEs but then again I’m utterly terrified that I’m going to die while my children are much too young to look after themselves.

Thanks
xxJane

Hi Jane

I was dx in feb 2008 when i was 34 and my boys were 4 and 1. I was 8/8 for er and pr. I was put on tamox and zoladex and told that i could stop zoladex at anytime and have ovaries removed. After 15 months zoladex i had this keyhole op as day surgery. This was 2 years ago and i dont regret it yet! Eating extra calcium and having bone density scans. Minor op with the same few flushes as before, still on tamox and now almost 3.5 years from dx.

Thanks Lolly, it’s really reassuring to hear that others haven’t had too bad a time without their ovaries. I really feel I have to give the zoladex a try with a view to having my ovaries out. There’s too much to live for. xxx

Hi Jane
I had an oophorectomy 10 days ago and it was a quick and easy procedure. Hot flushes have intensified a bit, but far too early days to say anything meaningful about SE’s. I’d be happy to keep you posted though.
I was 41 upon dx (June 2010), er 8/8, have been on TAM since Dec 2010. Whilst my periods had not returned (yet), all the monthly symptoms were present. My Onc did refer me to the Gynea as I was er8, have a family history of bc and ovarian cancer, am pre-menopausal, had a large tumor and node involvement. All factors that play a role in my risk to develop secondaries.
Whilst an oophorectomy is viewed in the UK as quite aggressive treatment if you haven’t been diagnosed with a gene mutation, I can confirm as you already said, that it’s part of standard treatment for bc in pre-menopausal woman in the European country I come from. Although there are no guarantees, I felt getting rid of my main ‘oestrogen factory’ in my body, was the right decision for me at this point in time.

I had an oopherectomy in 2009, I was er 8/8 and pr 6/8. I had been asked to consider the procedure by my BC consultant, I left it for a year then had growths appearing on my ovaries ( A lesser known SE of Tamoxifen), it was decided I needed an oopherectomy and a change to AIs instead.

I found the procedure Ok, minimal discomfort - surprisingly so, hardly noticeable scars and I didn’t notice any increased SEs at all.

Unfortunately though I still went on to develop secondaries, so it can only be seen as a way of reducing the chances of this happening, not eliminating the risk altogether!

Even with hindsight I would still have done the same!

Hi
I am strongly ER and PR positive and was on Zoladex for 2 years after my primary dx in 2003. I did discuss having an oophorectomy at the time with my onc who seemed adamant that my periods would stop naturally after the 2 years was up and that there were other ‘risks’ with an early menopause. I wish now that I had insisted on the op as my periods did return after the 2 years of Zoladex were finished and I then went on to have a recurrence and develop bone mets. I am sure the fact that my body went back to it’s pre menopausal state played a big part in this as there was no evidence of a recurrence during those 2 years. Also tamoxifen did not work for me or stopped working for me. Since my bone mets dx I have had chemo, which again I was assured would stop my periods, but I didn’t want to take any chances so I had ovary ablation back in 2008 just after chemo had finished and am now on AI’s.
I had terrible SE’s when on Zoladex, I was 41 at the time, and have not had anywhere near as many since my ovary ablation, but I was 5 years closer to my natural menopausal age. I tend just to get the general aches that come with being post menopausal. I did read somewhere (back in 2003) that the SE’s can be worse on Zoladex due to the way it works as it doesn’t stop your ovaries working it affects the way the pituitary gland sends ‘messages’ to the ovaries. I would also say, if the decision was mine and I was sure I didn’t want any more children, that I wouldn’t have 2 years of monthly injections if I were planning to have my ovaries removed afterwards - but I hasten to add that’s what I would do so please don’t think I am telling you what to do!
Nicky

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Hi Jane,

Just wanted to give you my exp. of this! I am (weakly) er+ and had rads to my ovaries last Nov. at age 42 - is this ablation? - sorry to be thick. Felt great for 2/3 months with no PMS mood swings etc( I had had a partial hysterectomy in 09 because of prolapse, so wasn’t having periods anyway). Started an AI called Femara in Feb. this year and have had some side effects - not sleeping too well, softer nails, softer skin tone, but not horrendous. Anyway, to get to the point! - my onc. at Velindre in Cardiff said it was def. worth doing, even with weak er+ people, as having no oestrogen getting through to cancer cells was beneficial. The ablation process is quick - 4 days of rads - no burning, pain etc unlike ones on your chest/neck etc. Like you I have had a recurrance so I wanted to give myself all the chances poss. to keep going. Hope our opinions will help you make a decision.

Love Sarah x

Thank you all so very much for replying.

It’s interesting to hear that SEs from oophorectomy haven’t been awful for anyone, by the sounds of it. I guess it’s rather a cummulative thing, like ageing… well, it is ageing, that’s exactly what it is! I think that the Zoladex is just a precursor to taking the ovaries out, just to test the water, at least that’s what my onc suggested. He said I could take it for up to 2 years but didn’t actually suggest I do the full 2 years.

Sarah, I hate the idea of getting saggy skin and not sleeping, both in a practical sense of having to look after my kids and because I really don’t want to be standing at the school gates looking like their granny! I’m no spring chicken as it is.

Norberte, you’re right that it’s my body and my decision. I’m not rushing as I’m reassuring myself that at the moment, the tamoxifen is taking care of any stray cancer cells. My onc did say if I developed secondaries I could have an oophorectomy to slow growth, but I think I’d rather have them out and hope the secondaries never develop!

Nicky08 thanks for info on zoladex and pituitary glands, that’s really helpful and if I do get horrible SEs on zoladex I’ll be hopeful that they won’t be as bad without my ovaries.

And Nicky65, I know there’s no guarantee that any of this will mean I won’t get secondaries but I feel as though I have to try, plus if I do get secondaries they’re bound to grow more slowly without such a flood of oestrogen. I hope things are ok with you.

Nim, glad to hear you’re feeling so good after 10 days. Would love an update to hear how things go.

Cheers again all, I think my decision is made, it’s just a case of timing! xxxx

I had both ovaries removed when I was 50 (benign cysts) and premenopausal, but was diagnosed with ER+/PR+ bc and mets six years later. So there is still a risk even if the ovaries are gone… that 2 stone overweight at dx must have kept my oestrogen levels high!

Hi All, this is an interesting read. I had oophrectomy at 42 after surgery,chemo,herceptin and tamox. I had 3 young children too and as a divorcee (my ex has mental health probs so incapable of parenting).
I took the decision of oophrectomy. I was in the early stages of a new relationship at the time, im now engaged but my libido has plummeted, so the moment am regretting the decision.

Jill

Hi all

Just thought I’d let you all know that I saw my onc today and I’m going to give Zoladex a try.

He told me that there isn’t any evidence to show that Zoladex on top of Tamoxifen improves survival stats, but apparently none of the studies done have taken into account whether or not the women were actually having periods! Seems extraordinary to me that there’s such a hole in this research. Studies show that premenopausal women who’ve been through 3rd generation chemotherapy do not benefit from Zoladex as well as Tamoxifen, but he said that could be because most of them have been pushed through the menopause already by the Taxane. He said it was plausable that because I was pregnant during AC and just finished breastfeeding and had a baby during Tax, my ovaries escaped the chemo-damage because they were inactive.

Not looking forward to yet more drugs in my body, but as soon as he said closing down the ovaries can starve cancer cells to death, I didn’t have a choice.

Hope all are well, with or without ovaries. xxx

Hi Jane
Good to hear you had your conversation with your onc about this topic. It’s quite tricky being our age, they think you may be menopausal due to chemo, but then you’re not. It made me very unsettled. Hope Zoladex will do the trick for you, and that the se’s are not too bad.
I am doing ok, life after oophorectomy is fine ;-). Hot flushes very manageable.
Take care for now, Nikki xx

I actually had to bring up the topic of my ovaries at my last checkup as I was still have my periods as usual, I think they may have stopped for all of 2 months during chemo last year. Mine was 8/8 and I already know I have a high level of hormones as they caused the itchy thing in all 3 pregnancies leading to induction of birth early.

Anyway, I am now on Tamoxifen plus have had 2 zoladex injections now and feel completely and utterly wiped out! I actually saw my GP y’day as I have a pain in my leg joint and she asked how I was feeling “Tired!” was about all I could say :slight_smile:

I am 31 and have 3 children and I think I will be pushing for having the ovaries out, possibly in the next couple of months.

Paula x

Hi, I was highly er/pr receptive and had an oopherectomy in January this year. The op was fine, recovery was quick and not too much pain or discomfort. I was given the choice of radiation to the ovaries or surgery. I’d had 6 months of Zoladex injections previously which were evil!! For 3 weeks after the injection I’d be fine, then the fourth week I would feel really low and upset. It was like the worst pmt in the world!
I’ve never looked back since my oopherectomy, I would dedfinately opt for it!
Paula x

Thanks for your replies, Paula and Paula!

I don’t like what I hear about the SEs of zoladex, I have to say. Sounds like an oophorectomy is the easy option! I did like what my onc said about starving cancer cells though and as I’m not ready to take drastic action immediately, plus onc said he wouldn’t sanction ovaries out without trying zoladex first, I’ve got to give it a go.

I shall just have to stay young in other ways :slight_smile:

xxx

Hiya, I was 37 when diagnosed, and highly ER positive (8/8). I did raise the question of zoladex/oophorectomy at check ups but was told several times that the evidence was weak/side effects troublesome. I have since been diagnosed with a local recurrence and, in preparation for surgery, have stopped taking the tamoxifen altogether now. I am told that I can expect 3 weeks radiotherapy (I didn’t have RT the first time) and plan, this time, to simply ask for an oopherectomy rather than ask their advice as to whether I should have one. Of course, it doesn’t rule out the possibility of progression (and I am still considering whether I will request a mastectomy on my other side too) but it makes sense to me.

Good luck everyone whatever you have decided, or have yet decided to do.

Naz

Hi Naz, sorry to hear about your recurrence.

I asked my onc this week why he thought the evidence was weak when it goes against common sense, and he said

  1. that if tamoxifen is working, it protects against any levels of oestrogen (and oestrogen levels are known to be higher on tamoxifen)

  2. none of the studies done have taken into account whether the subjects were having periods or not!

Absurd. I think they assume everyone who’s had 3rd generation chemo has been forced through the menopause.

xx