I noticed you haven't heard back from the Cancer Chat community just yet so whilst you wait I just wanted to offer you a very warm welcome to the forum and let you know your post has been seen.
If you feel comfortable doing so, it may help our members if you tell us a bit more about your situation. Hopefully some of our them who are at this stage of their journey will share their experiences with you soon but if you'd like to join in on some previous discussions about stopping Tamoxifen then just use the 'search forum' option in the purple bar above.
Our team of cancer nurses are available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m if you'd like to have a chat with them about this as well.
Like Steph, I just want to welcome you to our forum. I have had 2 bouts of breast cancer and took Tamoxifen for 1 year after my original lumpectomy. I then changed to Letrozole after a double mastectomy and took this for 6½ years. I stopped taking this in July 2017.
Have you recently stopped taking Tamoxifen, or are you about to stop it? As Steph says, it would be helpful to know a little more about your situation, so that we can start to chat about your concerns.
So glad l have found this forum. I have come off tamoxifen in the last few months after taking it for 10 years. Would have happily kept taking it as l had no side effects taking it and felt it was protecting me but now l seem to have lots of the side effects that l am reading on here. Tired and exhausted all the time. Brain fog and no concentration. Joints are aching. Seem to have ache or pain across my chest and under my two arms. My right breast l had a mastectomy 11 years ago and reconstruction a couple of years later so wondering why l would find that breast with ache or pain. It's like I'm waiting for the cancer to return after coming off tamoxifen as felt safer taking it. I've also got lymphedema in right arm as all my lymph nodes were removed. Maybe it's my age. I am 60 and working two jobs. Thank you everyone who posts their symptoms. It certainly reassures me I'm not on my own.
I had two wide local excisions followed by intra operative radiotherapy, in both cases, in January and February 2012. I am part of a clinical trial in relation to the radiation treatment.
When I started to take Tamoxifen I felt I had aged by about 20 years. I used to call it my "old-age" drug. I didn't really suffer with hot flushes and the generally recognised side effects but I have had brain fog, tiredness, weight gain and lack of libido. I have been single all these years and I have wondered if the drug has contributed to this.
I was quite excited, over the Easter weekend, to work out that I now have under one year to go with the 10 year Tamoxifen treatment. I thought I'd have a look on your website to see other women's experiences, when stopping the drug, as I have hoped it would give me a new lease of life. I do have a general anxiety about not taking the drug anymore as I do feel that it has protected against a recurrence over the last decade. I was hoping that my feelings of old-age and all other side effects would reverse (accepting I am now 10 years older!).
Has anyone had a really positive experience in stopping the drug? I ask please as I would like to get a balanced view about the cessation of treatment. I anticipate that those women who have had a positive experience might be so busy enjoying themselves that they are not looking at this website for support! If you have had a rotten experience, and now you're feeling much better, please would you also say how long it took for the side-effects in stopping the drug to cease.
Thank you so much for reading this post and, in anticipation of a reply, thank you.
I hope you all have an excellent day. We are all strong and brave women. I'm pleased this forum exists although I have not posted on it before.
Hi I stopped taking tamoxifen after 10 years in July and am now experiencing night sweats, hot flushes (Not as bad as I did originally but they had practically disappeared over the years) and bouts of anxiety/uncertainty over the last few weeks ..Has anyone else experienced this? I wasn't told to expect this at all and am surprised at how emotional I'm feeling .. I don't know if part of it is down to that fact that I feel less protected now that I don't have the tamoxifen or is it withdrawal from the tamoxifen itself ??
