I hope someone can help me in this mine field. My onc has told me that I will be taking Tamoxifen for 5 years. I’ve already had surgery, chemo and am due to start rads soon, and will also be having Herceptin.
My prob is that the more I read about Tamoxifen the more I think it is for ladies who have not yet had the menopause. I have, I had my last periord at least 5 years ago, long before the BC. I am worried that the onc had decided on this drug as he was under the impression that I was pre menopausal, and now doesn’t want to appear that he made a mistake. ? Does it make any differance?
I am greatful for all the drugs that are available to us to help fight this desease, but if I’ve got to take them, and suffer the side effects, I want to make sure that I’m getting the best for me.
When I asked about the benifits to me he just said it was the best for pre menopausal woman, and didn’t tell me any benifits for post menopausal women, just that he might change me to another drug after a few years.
When I asked my oncologist which drug I would be having, she thought maybe Tamoxifen. I was surprised. I had been on HRT until diagnosis and although I could not be certain I thought that, at the age of 55, I must be post-menopausal (especially as I had had no periods since stopping HRT) and would be put on an aromatase inhibitor. It wasn’t time for me to start the tablets quite then and so we didn’t discuss it any more. At my next appointment, I saw a locum oncologist and he let me choose! After research, I had decided that I wanted to try Letrozole, as it had good results for post-menopausal women, and so that is what I am taking.
I think they do give Tamoxifen to post-menopausal women as well but I don’t think it is the best drug for them. You really need to discuss it with him again.
Maybe you look so young, he assumed you were pre-menopausal!!!
Did you get a blood test done, as I beleive this is the only accurate way of determining if youve had the menopause, and so decide which treatment is right for you. Id go back and discuss, we are the only ones who can advocate for our health and you are right to be cautious.
Cathie x
Hello all,brief history;-DX nov.08,inflammatory BC,chemo,MX,rads then prescribed Femara for 8 years by my surgeon. The menopause was never at any time mentioned,although I was 56 at DX,it was only about a year at the most since my last period. I started the Femara in June 09,the S.E.s intensified slowly and I was prepared to accept the aching joints and weight gain but my good boob was always sore,
I complained about it to everyone but I got a clear mammogram in November 09 so that was fine but I was finding it hard to move on when I was constantly thinking about it plus the nerve pain from my op. At a check-up with my surgeons clinical assistant,I had my usual moan about aches & pains and sore boob and she suggested I tried Exemestane so I was happy to give it a whirl,However after 6 weeks my boob was sorer and I was in more joint pain. Then I had my oncologists appointment with the big man himself and he said he would never have put me on either of these pills,that he would have put me straight on Tamoxifen and would I like to go on them? I asked were they the poor relation of the anti-cancer pills as I believe that the other two cost about £80-£90 per month,his answer was that all new drugs are expensive but eventually come down. So Im now in limbo land on sweet F.A.till his letter gets to my G.P.and after only 5 days with no pills,my boob is feeling a lot less sore,hope it stays that way when I get the Tamoxifen. I was a hairdresser all my working life and had about 6 clients whod had an MX,all in their twilight years and on Tamoxifen and all they ever moaned about was the price of mastectomy bras,so here`s hoping.
Best wishes to all love Mags x
BCC have published information about tamoxifen which you may find useful to read, you are also welcome to call our helpline to talk through your concerns with our specialist nurses and trained helpliners on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2:
The US web site Living Beyond Breast Cancer also has some good information about the various hormone therapy drugs. They do a series of podcasts from their conferences and conference calls.
I had the opposite problem. I am 46, but had a hysterectomy when I was 31. Although my ovaries were left intact, my breast consultant assumed I was post-menopausal and put me on Arimidex. I did the research and worked out that this would not be doing me any good if I was still pre-menopausal so I insisted on a blood test. That proved I am still pre-menopausal and I was switched to Tamoxifen. I had less side efects on Arimidex, but maybe that was because it wasn’t actually having any effect on my hormone levels.
As others have said, you should get a blood test to establish your menopausal status and then disucss the best drug based on that. I don’t hink any of them are necessarily better in terms of SEs, but like you said, if you have to suffer the SEs, you need to know that the drug is doing what it should be.
Hi all,
Thank you for all your comments, It’s so comforting to know that I’m not the only one trying to make sense of all this.
Ann,
I was only 40 when the menopause started, so now at 52 perhaps it’s an understandable mistake. But I did tell the nurse all my medical history right at the start of treatment. So it doesn’t fill me with much confidence that the oncol referred to my face and not to my notes when deciding what my menopausal state was. I hope he doesn’t give me the choice, I wouldn’t know where to start to insure I had all the right information to make the right decision! How did you arrive at your choice? And is there any way of knowing if the drugs are working?
Cathie & Elsk,
I haven’t been offered a blood test since BC. But I did have one years ago. I think you are right, I’ll ask for another.
Mags,
What a journey you are having! It’s simply not fair that having gone through the menopause once with all it entails, that we have to get all the symptoms again. I do hope that Tamoxifen will be kinder to you.
Hi Anne,
Nobody at my Hospital EVER explains anything voluntarily,I always have to Wheedle info from them,for instance,last week when I saw the Onc and he put me on Tamoxifen,I told him we were planning to go to our Spanish house for an indefinite period,just coming home every 3 months for my checks. I asked him what were the danger signs I should keep an eye out for and come home straight away,his answer to that was "youll just know". I admit that I suffer from an over-active imagination but his comment didnt help,I often wonder how many questions some of the girls on the site must ask their docs,Ive certainly never felt encouraged to ask much,maybe I look simple and they think I wont comprehend.
Cheerio, love Mags x
Hello again,
forgot to add that I asked should I be having a blood test of some sort or another as I havent had any kind of a blood test since my op last May,thats 10 m0nths,but he said it wasn`t necessary.
Hi Mags
Found your post really interesting. Ive just posted a question about info as I have found by reading in here,that it varies so much what people are told throughout the journey of diagnosis. Ive found loads of really helpful general info from lots of places,specially here, but abput my own situation, I feel ill-informed.
x
Although my blood test after chemo showed I was probably post menopausal, my onc said I should have Tamoxifen for 2 years and then go on to Arimidex as recent research had shown this was as good as any regime and he thought it good to have the benefit of both types of drugs.
I changed to Aromasin but unfortunately developed secondaries 2 years later. I was changed to Arimadex but the tumours still grew so I was put back on Tamoxifen.
This has suited me as I have no noticeable side effects with Tamoxifen.
Regards
Kelley
hello Everton babe,
Ive read both your threads and my experience of how I was given the bad news was very similar to the other ladies,possibly I could have got a lot more info if Id known what questions to ask at the time, Ive got my cancer education from this site and it is still very sketchy. Ive had Inflammatory BC,if you go on those threads and read how much some of those girls know youd be amazed. After my DX I didnt research it at all then I had my chemo and still didnt come on the site till after my MX,then at first I was sorry I did, I was terrified when I started reading everyones case histories,I just thought you got diagnosed,you got treated,you got better.I couldnt agree more with you about getting it written down for us,albeit an abridged edition in laymans` terms,maybe that might be possible now if one insisted. The old adage about “a little knowlege is a dangerous thing” was written with me in mind.
Bye for now Mags x
Morning all but mainly Anne04,
Have just read the Tamoxifen leaflet and listed in its side effects is that in post-menopausal women,it slows down bone loss so that,to me at least,suggests thats why the onc has changed my tabs to Tamoxifen as the other 2 contribute to bone loss(I think)hence the need to prescribe ADCAL D3 alongside them to compensate. Do you girls whove been on Tam for a while take anything for your bones? On a lighter note,I actually laughed when I read another SE, It seems my singing voice could be affected,I had a very nice voice until they invented music so I wont be losing sleep over that one.