I had bc in 2005 for which I had lumpectomy, chemo radiotherapy and 5 years of Tamoxifen.
I was put into a chemo induced menopause as I was only 42 and had no periods for 3 years. AFter 3 years I started to have bleeding every 3-6 months which they thought was Tamoxifen induced or my ovaries kicking in again as affects of chemo wore off. HAD gynae checks - all fine but blood tests showed def only peri menopausal not post. I came off Tamoxifen in JUne after 5 years and feel so much better - no mood swings and all the other crap that goes with it.However I now know that I have oestrogen surging round again and it is scaring the **** out of me!
I have spoken to my Onc about staying on Tamoxifen for 10 years but he said no because it can cause DVT, womb cancer etc if continued over 5 years and had little benefit. He siad as I am “low” risk anyway - node negative and small lump I should not consider it. The only other option is ZOladex and Arimidex but again he said as I have oestopaenia this is not to be adivised and only gives me a 1% more chance of not having a recurrence.
Even though my odds are good anyway I am SO scared of taking nothing. It’s eas yfor them to say “Just get on with your life” but I feel petrified all the time of what this Oestrogen is doing swirling round unchecked! Can anyone help , or is anyone in same postion?
hi alise
I’m 5year clear after lumpectomy and radiotherapy. I’m 54 so everyone keeps telling me I will soon be going into menopause. But I haven’t yet. I too have just come off tamoxifen. I know just how you feel! Dealing with kidney stones and infection at the moment and all the time I have in the back of my head that its the cancer come back. It’s rediculous. This week they’ve done ultra sound and CT scan anything nasty they would have spotted but the thoughts still there.
As I say “They’ve cut the cancer out of my breast but they can’t cut it out of my mind”
I recently had a bad time with depression, nobody understood that, afterall I was getting the all clear. We have gone through a very tough time and need support. I got my support from The Haven in Leeds getting counceling and other treatment. With their help I was able to look again at my life.
You are not alone with this there are thousands of us. Just keep stamping your feet until someone listens and helps.
Lots of hugs
Chinook.
I finished Tamoxifen in April and was so pleased to be finally looking at being drug fee and getting the old me back (I am 43).
I just don’t feel any different - upped my dog walks and number of gym classes, no weight loss (1 stone with 5 years tam) still have mood swings and low energy - my onc had requested bloods checked after 3 months to find out menapause status (she was adamant I would be pre) and the results have come as in or post menapause, so I am being referred back to clinic for further options.
Have just been checking the arimidex etc postings and not looking forward to flushes all over again.
WHy are they putting you on Arimidex? Wont they just let you stay on nothing ?
I am only peri menopausal and as I am not fully post meno Arimidex wdnt work anyway. However I was told 5 years on Tamoxifen was enough hormone therapy.
Its all so bloody scarey isn’t it? Mind you I have felt MUCH better since stopping Tamoxifen a lot less emotional and depressed. I am just scared sh** less all the time!!!
Hi Alise I have just finished(1 wk ago) my 5 years on arimidex.Shows how much we all differ not only physically,but just as much emotionally-
for me I just couldn’t wait to come off it although really I had none of the terrible se’s others have had. I did go from oesteopenia to oesteoporosis,but that has been improved and now I take nothing for that either.My cancer was 100% er -but even so for me I prefer to be without it.I was post men. at diagnosis,but then I had an early menopaus at 40-so for 15+ years there wasn’t much circulating in me anyway-but still got hormone related cancer, so I don’t know good luck