5 Years since diagnosis and ending Tamoxifen

Hi PinkSparkle

I'm not from this group but noticed that your post hadn't had any replies yet. By replying to you it will 'bump' it back to the top of the discussions page where it stands more chance of being seen.

x

Hi latchbrook,

Hi latchbrook,

Hi, sorry, just hit a enter a few more times than I meant to! Thanks for replying to my post. I still haven't had any other replies, but am hoping someone may yet see it.

Hi PinkSparkle

No problem, we've all done it 

x

I'm possibly not the right person to reply to you but I'll tell you my experience anyway. I had a mastectomy 15 years ago. There was no lymph node involvement. The onc suggested chemo just to be on the safe side. I did it.

Then she said that as I was so young, Tamoxifen might be a good idea. Back then they recommended it for five years. I had all the side effects of Tamoxifen and finally, after three years, I came off it. I couldn't stand it any longer. I didn't worry at all - after all, they got all the cancer, it hadn't spread, the chemo would have slapped any cells thinking of spreading and the Tamoxifen was really just an insurance policy.

Last year I was diagnosed with metastatic breast cancer. I'll never know if taking the Tamoxifen for the full length of time would have prevented it but I wish I'd tried because now I'm back on it with no chance of ever coming off either it or one of its relations.

I don't know why you decided to stop it but if it was just the side effects, they are really nothing compared to the alternative.

Hi PinkSparkle  I’m post menopausal so am on Letrozole and for 5 years. I’ve got til June 2023 to go. I know I’ll be reading the research when that time comes to see if 5 yrs is the optimum length although I did read that being on it longer may be of benefit. I know we are all different and so are our choices and response to medications. I have come across those who chose to stop meds’ because of bad side effects and just wanted some quality of life. None of us knows what will happen when stopping, whether by choice or just getting to the end of the course, but I’ll be feeling the same as you when that time comes I’m sure. I think it’s quite normal. I think there’ll always be some worry, I found it does lessen over time but tends to pop up when triggered by something else. I have asked for an appointment with the oncologist at the end of my course of Letrozole to discuss it and see what the current thinking would be then about the optimum time for taking it. 

Take care x

Hi  You must have had really bad side effects to stop Tamoxifen. I have heard of quite a few ladies do that too. It’s can’t be an easy choice but sometimes that’s the only thing to do. You’re right that you cannot know whether keeping on with it would have made any difference. I do hope your treatment is effective for a very long time and se’s are manageable. 

Take care x

Hi

I had a mastectomy, reconstruction and reduction surgery in February (just before lock-down). Last week I spoke to my Oncologist and asked to try another drug instead of Tamoxifen. I felt my symptoms were getting worse, mostly sweating and chills (I've stopped falling over so much!) I think my symptoms were made worse by trying to come off Citalopram. Although I'm on a low dose, I found that when I went through the menopause I really needed something to lighten my mood. Halving my dose during August caused me to become very low and I'm sure the anxiety made my sweating worse. So, I'm back on the Citalopram and feel so much better and am now trying Letrozole. I'm not sure it is making any difference, but I thought it was worth a try!

People describe me as a strong woman, but I'm not really. We all need to find our coping mechanisms and I think in these days of increased awareness of mental health we all have to recognise that its OK to sometimes not feel OK.  Breast cancer is a huge thing to cope with and if you need help to cope then go find the help you need.  At my lowest point I did consider stopping taking Tamoxifen or anything as I questioned my quality of life, but so far I haven't found any alternative that seems viable. Next I'm going to try alternative therapies to help me cope My local cancer charity offer all kinds of things, such as aromatherapy.

A friend of mine did say that we felt just like you after her five years was up. So I do think what you are going through is likely to be normal. During lockdown I certainly felt neglected by the health profession. I think sometimes you just need to talk to someone who understands what you are going through. A problem shared is a problem halved. 

If I were you I'd find a local group or Macmillan nurse you can talk to. They always seem to know the right things to say. 

What you are coping with is huge, and you should remember you are amazing. One day at a time......