I’m hoping some of you lovely ladies can help me clear something up…I am 35, pre-meno and started Tamoxifen just over a week ago. My onc has not yet started me on Zoladex but said he will if my periods continue as they did through chemo.
However, reading through numerous threads has made me think that perhaps I should be on Zoladex now, as most ladies that are taking Tamoxifen seem to be on Zoladex too. Is there anyone out there that is on Tamoxifen alone??? My onc is awesome and I have total faith in his abilities but it has got me thinking,
Hi Kelly, i was only on Tamoxifen for 50 days, but it was the only treatment i was on, and had it suited me i would have stayed on it, i am only on Zoladex now whilst i am waiting to have my ovaries removed, due to being 45 yrs old, no where near menopausal, then once the ovaries are out i shall go onto an aromataise inhibitor. i think some women do have Tamoxifen and a two year course of Zoladex as well, but as i said, i would only have been on tamoxifen, and it is supposed to be the best, also, in answer to your question on nausea, i did experience that on tamoxifen, but as i was only on it for a short time i can’t really help you there, but hopefully it’ll setlle down for you
I hope you do not mind me asking, why did you only stay on Tamoxifan for 50 days, I am struggling with it at the moment and dont like going back to the oncologist in case she thinks I am moaning. I cannot sleep because of the hot sweats, which happen about every hour day and night. I have a lovely beard which would suit Father Christmas and my legs ache so much in bed. I have been on it 8 weeks now and I do not know what to do.
Hi Jane, like you i found it very hard to cope with tamoxifen, but my main concern was that my mother and grandmother went through the menopause very late in life, so i don’t want this pretend menopause followed by the real thing, had to do a certain amount of having a go at the onc, but its up to the gyni now, they just put me on zoladex whilst i’m waiting, but i still have sleepless nights and hot flushes and sweats, but think i’d get every side effect going anyway. talk to your onc Jane, they do have things they can give you to help
Hi everyone, My sympathies with everyone whos suffering with side affects on Tamoxifen. I’ve been on it for a year and a half, but I wasn’t tolerating it at all well. I had started the menopause and was experiencing a few symptons such as the odd hot flush and trouble sleeping. But when I was put on Tam. I suffered every side affect going, and Alison, I’ve been sprouting some nice designer growth. I’ll have to start shaving soon. The course, dark hairs seem to appear over night!!
The breast care nurse admitted that the Tam would make my menopausal symptoms worse. I had my 6 month appointment with the Onc last friday and when I told him I was finding it really hard managing the side affects, especially the tiredness and low moods. He’s now put me on Aromasin, which I was going to change to anyway next May after 2 years on Tam. I’ve got to take Aromasin for the next 3 1/2 years. I’m hoping I will get on with better on it then I did Tam. I feel better about taking it after the reassuring messages, I’ve had from the other ladies that are on it.
Thank you for that Cynthia, i am looking forward to joining you on that, i am having hot sweats that average about one every half hour, with hot flushes inbetween, it really is hell
I am 39, 37 when diagnosed and now just on tamoxifen, have completed 8xchemo,18xherceptin and 25xrads.
I have asked about zoladex but my Onc has advised while the tamoxifen looks to be working, leave the zoladex for a just incase. I too have a lot of faith in my Onc (she got me taxotere and herceptin 6 months prior to NICE approval for primary) so while I do read up and note others treatment plans I will accept her decisions and explanations.
Have been on tamoxifen for over a year now, not really having too many side effects just need to loose the stone in weight I have gained.
I have been wondering about this because since I started tamoxifen (10 weeks ago) my periods have continued (I’m 39) - but with a vengeance and bang on 28 days. Does this mean it’s not working and if so, should I be on Zoladex too? I don’t have any appointments with my oncologist - have only met him once - but will be seeing my consultant next Monday for first 6 month check up. Should I ask him about this? Also, on Friday night, found a lump near the top of my bionic boob - would this just be all the lumpy tissue from the DIEP (April this year) - anyone had lumps in bionic boobs?
I am on just tamoxifen, Zoladex has been mentioned (it depends which doctor I see how much pressure is put on me to take it!) but I have resisted it due the potential side effects. I have just turned 40 and haven’t totaly given up on the idea of having children (if a suitable father comes along :-)). I am a patient at a leading cancer hospital so I don’t think I am being short changed not being prescribed zoladex…
I am just on Tamoxifen and so far only side effects are hot flushes but they are bearable. There is no talk of me being going on anything else. And the oncologist said they will do a blood test to see if I am menopausal as I had regular periods until I stopped HRT when I was diaganosed and I havent had one since.
I’m just on Tamoxifen. All other treatments seemed a bit invasive but they weren’t offered to me anyway. I have had quite a few side effects but have found that now, a year on, I am starting to feel much better. I only have the odd hot flush now but am usually hotter than everyone else anyway. I need fewer bedclothes than my husband. My periods come every 8 weeks usually with the odd one coming at 6 weeks. I do get a lot more bloating and period cramps beforehand than I used to and they seem to last longer but other than that I am fine. They were going to check my hormone levels at one point to see if I was menopausal but said they couldn’t whilst on the Tamoxifen as they would get a false result. I still get leg and foot cramps and feel tired a lot but think the tiredness is due to aniti depressants which I have reduced to half a day to see if that helps… and I also bruise easily. I am 45 and was dx a year ago. Hope this helps.
i wasn’t offered anything either, but was told by the consultant that i definatley needed chemo, but the onc said i didn’t, now that they know i have an estranged sister who has had breast cancer in both breasts in the last seven years, well, it still feels that i’m not worth the effort, i might get to see a professor in the coming year about genetics!!! whereas my sister who lives in a different authority seems to recieve a lot more treatment than i do, her bc nurse rings her regularly, even now, my bc nurse has never rang me, she used to say oh i’ll give you a ring, the last time it was i who rang her, and i really have felt that i am wasting her time. goodness, i do sound very bitter don’t i?
It’s understandable to sound bitter Alison. My BC nurse never rings me even when I have rung in floods of tears. She will ring back if I leave a message though. She is brilliant at finding out things and I like her but she looks at me weirdly and says I am “a bit of a challenge”. When I asked about bc support groups she said that she didn’t think it was “quite me” and I still don’t understand. Other people seem so well informed and it I find I am constantly having to ask questions even a year on. One consultant says I am living with a life threatening illness another says they never give patients the all clear but I can say that “I had breast cancer” as opposed to still having it. Other people are told they are all clear or in remission. When diagnosed, I was told that if there was even 1% chance of it coming back I would have chemo, then I was told I didn’t need it but there is a 5-10% chance of it recurring. Others get MRIs, ultrasounds and Cat scans and are told that they should have hysterectomies, oopherectomies, zoladex etc. I get told that they can’t tell if I am in the menopause as Tamoxifen gives false results but that Tamoxifen is the best treatment for me. I have had blood tests done and not received results and my consultant has written to my doctors recommending a brand of anti depressants to help with hot flushes but my doctor said she can’t prescribe them as she is not allowed to. Yesterday I had an app to see the senior consultant and was given the registrar instead. Actually, I found him to be nicer and easier to talk to. I have also found that, if I go on my own, I get a quick check sometimes by doctors who don’t even introduce themselves but, if my husband is with me, it’s handshakes and introductions all round. So the current situation is, I managed to persuade the docs, via a handwritten note on a scrip request, to change Tam to Nolvadex but daren’t tell the consultant as he poo pooed the idea and I am on yearly mammograms but don’t get the results even though it says on the notes that a letter has been sent to me. I also get 6 monthly checks and I am now going to go away and try to forget that this nightmare ever happened… until 12th May 2008 when my next check up is…Lol
Oh i am so jealous Debbie, i haven’t even had a blood test done!!! told i would have a mammogram every two years, i am having my nipple reconstructed in Jan, its only the surgeon who seems interested in me, i got a letter last week cancelling my appointment with the gyni, who is going to give me my next zoladex injection (the oncologist suggested that) i had to have a three monthly zoladex due to being away when the next monthly one was due, anyway, i had to ring and ask why my appointment had been cancelled to a date that took me well over the three month mark and would have left me with no protection at all, it seems the date they gave me, well, the gyni doesn’t even have a clinic on that day!!! anyway, i kicked up a fuss, the bc nurse wasn’t sure if i would be at risk if i didn’t have any zoladex in me, and finally got an appointment for the day after the original one. i now feel totally paranoid about seeing this gyni, i am on zoladex until i get my ovaries out, but i will probably get told my the gyni that he won’t do, this is how i am now feeling about this whole business, as if i am just a nuisance!
I know what you mean but I suppose we are just a number… and a very big one at that. The registrar I saw yesterday practically sprinted out of the exam room after I had gone through my usual list of queries, which I will repeat in 6 months anyway as my memory is all to shot. It’s like how I used to feel the week before a period but more and nearly all the time if you know what I mean. The only pmt symptom I don’t get now is sore breasts and anger. I don’t have the energy to be angry for long. The blood test was because I am bruising really easily. No-one gave me the results and I had to ring the bc nurse to find out if all was well. I am jealous that you have a gynaecologist as I have been told to take the tamoxifen and get on with it so I too will have two menopauses. I am 45, started my periods at 17 and my mother still had hers well into her 50’s so it looks like I will have a double whammy. I also feel jealous of those people with their own doctors. I belong to a practise where you see who you are given. I went to see them after my dx and the doctor said to me “ohh. So it was cancer then?”. He hadn’t even read my notes. When I rang him sobbing and saying I felt so low, he said that he would give me 7 days worth of diazepam if I joined Pansies ( a bc support group ) and refused to give me anti depressants. The Mc Millan nurses saved my sanity. I would ring them and tell them how you feel Alison. They will talk over the phone or come to visit you. I can’t praise them enough.
Anyway, sorry for rambling… I do go on. Hope you are feeling better soon and send you cyber hugs in the meantime
I had lumpectomy, rads and chemo ( border line for chemo as neg nodes but given a “choice”) in December 2005 and now tamoxifen. AFter chemo I had no periods for 20 months and then last month they came back!!! I am 44. Had pelvic scan and all OK.
Went to onc getting hysterical asking for zoladex to stpo all this oestrogen floating around and he said tamoxifen was enough in my circumstances and zoladex was of no added benefit. I think they look at all cases individually. He did say I could have them for psycological benefit???
thank you so much for your responses, I’m so relieved to hear I’m not the only one who is not getting Zoladex! Funnily enough my periods continued regular as clockwork throughout chemo and yet I didn’t have one at all in Oct and none so far in Nov. Thinking of doing a pregnancy test to be honest to completely rule that out, although I’m sure I’m not.
It has taking me a year to stop being paranoid about my treatment compared to others and I think a lot is just a postcode matter. I am happy now that I have had all the treatment necessary and feel I can finally move on. I think most women are on Tamoxifen alone and are probably very well on it but I know how you feel. I have been reading alot of women on Tamoxifen for 10 years whereas I have been told 5 years so who knows???