there is an interesting clinical trials going on about this issue at the moment (perhaps someone has mentioned it before). its called the SOFT trial and is looking precisely at whether tamoxifen alone, tamixofen with overy suppression (either Z or removal) or arimidex and ovary suppression is best. results won't be know for quite a few years but this is an area where there is clearly quite a bit of uncertainty and the differences are probably quite marginal (my onc says). i will need to make this decision sometime early next year after chemo and more surgery. my onc said in cases like this, instincts are important. he said he has the technical knowledge but actually in a situation like this where things aren't so clear, psychological orientation and well being count for a lot. basically, he said if you have a strong instinct about the wya treatment should go, we'll go for that. i found that reassuring on two counts - one that my voice will be heard on this and second the nhs is not in any way counting pennies over this issue....
has anyone checked out prof. baum's views (from uch i think) on this? apparently he has made some strong statements saying he thinks going straight to arimidex maybe a good option even for us pre-menopausal women...but i haven't tracked down his papers/speeches.
anyway, thanks for all your thoughts and experiences.
i'm hoping the ovaries are out before then Chatta, even tamoxifen didn't stop mine, and am due on now, and don't i know it, so wondering if the zoladex with stop my periods at least till the ovaries go, how good that would be
You're right about the blood tests; I have one now each time I see my onc just to check if I'm properly post-menopausal. Still have borderline levels although I haven't had a period since chemo 2 years ago. I wonder if they'llcome back ...? I'm sure your onc will do this test for you if you ask.
Take care, Chatta
I think, but i'm not sure and you'd have to ask your bc nurse/onc/or the helpline here, that you can have your blood tested to see how menopausal you are, like Kelly, i just want to have the best protection i can get
Hi RR, my mum was 57 when she stopped her periods. This is a very personal and individual choice but my Onc, my GP and my Gyna all said the same thing that when my ovaries started up again (after two years of zoladex) and taking the tamoxifen enough was enough. As I was E+ it was not worth the risk of having eostrogen travelling around my body again so they decided to whip those little ovaries away. Yes, I get the usual aches and pains of taking Arimidex and the menopausal symptoms, none of us can't do much about the menopause problems anyway as we can't take HRT. Sometimes I think we all put our aches and pains down to the medication and not the meno, I know I do, but as I have said before my GP said that any cancer treatment is going to make the menopause problems worse.
I am 50 now and if I knew then what I know now I would have opted immediately for ovary removal and straight onto Arimidex.
All treatments have their risks in one form or another so we have to weigh up what is right for us to get the best possible outcome.
Love to you all
Hi everyone, it's really helpful and interesting to read all your comments and experiences here. I am 43, had mastectomy for G3 tumor which was ER+. I chose tamoxifen and zoladex instead of chemo, but am really struggling with the most terrible side effects on zoladex, so after only three months I am seeing gynae to discuss ovary removal. I think it will be the right thing for me.
Breast cancer forces us into making some really tough decisions, and at the end of the day quality of life is the most important factor, balanced with 'have I done all I am prepared to do to prevent a recurrence'. Some side effects are acceptable, debilatating ones aren't, in my opinion.
Keep asking the questions!
I was rather assuming that I wouldn't get periods back in five years' time when I will be 50! But as my mum had a hysterectomy at 48 I don't know when I would naturally go into the menopause.
I had to badger my onc about having the ovaries removed, but at 45 i certainly don't need them, but due to having so few periods when i was younger, and only becoming regular in my mid thirties, well, i could be like my gran and go on with periods till i am 58, my mum died when she was 54 but was still having regular periods, i am not going through a pretend menopause for five years, then get my periods back and go through it all again, plus me and tamoxifen really didn't get on well together, isn't it sad how we're happy to see the back of our organs???
Hello ladies, just caught up with this post.
I'm due to have 8th (& last) chemo tomorrow, then due to have rads/tamoxifen & herceptin (am borderline on that one - onc has finally decided I should have it just in case). I am 45, with grade 3 tumour/3 lymph nodes affected.
No-one has mentioned zoladex to me, or the possibility of ovary removal. I would be very happy to get rid of all excess oestrogen as it worries me to have any circulating. And I certainly don't need ovaries - three teenagers is quite enough!
Any advice gratefully received
Oh Sue, I feel I have upset you - so sorry, certainly wasn't intended. Just felt if we are all honest about treatments and our views it can sometimes help others with difficult decisions. Yes, I certainly agree not all treatments are suitable for everyone. We all have things that would have an adverse effect rather than a positive one. Tamoxifen for me was not right after two years. The worry of the side effects and possible future side effects took their toll and I had a silly intuition that this was wrong for me. 100% agree with you, quality of life is paramount, from other family members, that is the one thing I have learnt above all else.
Do hope you soon come to a comfortable decision. Again, sorry if I offended, was not intentional.
Chatta - unfortunately if you're on t but not z you still have to take t for five years. However, it's worth chatting to your oncologist about. I'll see if I can get my oncologist to give me the research reference.
Kelly - thanks for the message. I'm taking the oncologist's advice rather than ignoring it. Have I done all I can to prevent the breast cancer returning? It's a big question and one that we all struggle with. I could have my ovaries and my remaining breast removed but in my case it probably wouldn't make much difference to my survival chances after all the other extreme treatment I've had while it would definitely make a lot of difference to my quality of life. And there are other risks too to consider such as an increased risk of heart disease after the menopause. My mother had a heart attack at 51 and I'm 45 now.
I think that it is important to say that ovary removal isn't for everyone and because of its permanent nature should only be undertaken after much discussion with the medics and not simply regarded as a matter of course.
I really am concerned for you. I know every person's situation is individual to them, and we all have to make our own decision, but if your periods have returned and you are not menopausal, plus your age, E+ tumours please think again, I believe you are taking a chance but do not want to come across as being offensive etc.
If we can do all that we possibly can with all the information available, plus all the wonderful friends and advice that you can get from here, at least if the cancer returns and we know that we have done anything you will not have any regrets. Let's hope it doesn't return but please play safe.
Sorry to ask for more details but I have been really interested in your posts and am struggling a bit with the jargon.
I just had my WLE and some lymph nodes out this week. I have grade one papillary carcinoma. I am waiting for results on the tissue, but for now the treatment suggested is radiotherapy then tamoxifen. I have heard lots of scary stuff about the tamoxifen. My husband and I are also worrying about the contraceptive implications as they took out my contraceptive implant as the cancer is Oestrogen positive. Should I be asking about ovary removal? I am only 35 and definitely do not want kids. Can anyone help?
All the best
Thank you all so much for taking the time to reply to my post.
There's certainly lots to think about and what you have said makes me think that I need another opinion. I am also not sure whether the protocol in terms of some of the drugs you mention is the same here in Australia. You are mentioning things that my Onc or Gyn haven't discussed with me.
I'm not being pressured to make any decisions so will do some research and let you know how I go.
Good luck with your treatments.
I forgot to mention, i did not have chemo or rads, as it felt that the tamoxifen over five years would be suitable for me, i think that if you haven't had chemo or rads, then you really have to have the hormone treatment, especially when your bc was a grade 3/2, i personally would not risk not having treatment, as its the hormone therapy that will help stop any recurrence for me.
I saw my once yesterday, he gave me a zoladex injection (a three month one as i am away on hols when the next monthly one would be due, so not prepared to take that risk) and he also told me that hopefully the ovaries will be out by the end of the year, i can't wait to have them removed, i had terrible side effects with tomaxifen, i'm not prepared to go through a pretend menopause then the real thing after five years, at least by putting my points forward i feel that i have had control of my treatment, if its what you feel is best for yourself, well, you have to tell the onc how you feel, also, i had family history for very late menopauses to back me up, just very lucky that my onc saw my side of it.
I was interested in what you had to say about the new research; I've been on t for nearly 2 years and would love to stop! Do you know where the research results have come from? I'd like to read this and talk about it with my oncologist. Thanks and keep well,
An alternative view.
I had 2 grade 3 oestrogen-positive tumours. Diagnosed at 41 and am now 45.
After a mastectomy, chemotherapy and radiotherapy I was put on both t and z for two years. At the end of this time my oncologist told me that new research suggested that remaining on t for a remaining 3 years would have no advantages in terms of survival and so I might as well stop both drugs.
After stopping the side effects disappeared pretty quickly. No more hot flushes or fatigue. The periods have returned (albeit much less regular than before) so I despite everything I'm still not menopausal. The cancer hasn't returned and I hope it never will.
When I told my oncologist about my periods returning she advised me to simply get on with life and enjoy it rather than undergoing further treatment. I'm taking her advice. I don't intend on having either a hysterectomy or an oophorectomy. Surgery has risks (particularly with a hysterectomy) and the effects of both operations are permanent. Tand z can have unpleasant side effects (incidently the same as after the operations) but not everyone gets them and at least it's possible to stop taking t and z if one wishes.
Please get the best medical advice (including a second opinion if necessary) and ask to see the research that backs it up.
I am/was very similar to you (3 years down the line now), I had zoladex for two years with tamoxifen, stopped zoladex at end of course and after 3 months had the most awful side effects from the tamoxifen. To cut a long story short had my ovaries out in March and now on Arimidex. BEST THING I EVER DID. Yes I get some joint and muscle problems but nothing like the side effects I had with the tamoxifen. If you can get rid of the oestrogen, only go through the menopause once and get back to normal in the quickest timespan then I would recommend you go for it.
Hi Flishy, i am hoping to get my ovaries removed soon, and then i will go onto an aromatase inhibitor, i am on tamoxifen at present, and do not want two menopauses, Dahlia has put it really well, if your oestrogen positive , well , you still need to keep it at bay, you also produce oestrogen in your breasts, and the pituatory gland, and some other parts of the body, but not sure where.
Why hysterectomy? Why not just a Bi-lateral Salpingo Oophorectomy(BSO) followed by 5 years on romatose Inhibitors?
Your ovarian cancer risk would be reduced to less than the general population and your BC risk would also be reduced. Tamoxifen increases the risk of womb cancer but having the BSO would obviate the need for Tamoxifen (and contraception). The AIs e.g. Arimidex would take care of the naturally occurring oestrogen still produced by the body and in fact introduced to the body by e.g. plants oestrogens, the treated water we drink, plastic bottled water etc.
I have just finished chemo and start Rads on the 17th September. I'm 39 years old and have two small boys under the age of 5.
We have been discussing our options for the future and whether or not the dreaded Tamoxifen hormone therapy is the way to go. After chatting to my oncologist and separately to my gynecologist it appears that we have three options. Tamoxifen for 5 years, Zoladex or a hysterectomy.
I really don't like the idea of taking tamoxifen am worried about side effects and also that I still have to find reliable contraception. I also don't want to go through menopause twice! The same with Zoladex except for the contraceptive benefits. I am also unclear on how long you can take Zoladex for?
Has anyone out there opted for a hysterectomy instead of taking the drugs? I know there is a risk of Osteoporosis but I am ER/PR positive and don't like the idea of the hormones being back in my body after I finish Tamoxifen.
Would be good to hear your thoughts?