Tamoxifen

Thank you for taking the time to write. I believe that there is a database - the surgeon can put all your data into that (eg age, size of lump, type of lump whether it be hormone related, whether you have had mastectomy, whether it was present in lymph node)… lots of different information. Results were within seconds. They are percentages of survival rates comparing different treatments and effectiveness. If I didn’t have mastectomy I would more than likely be required to take Tamoxifen. But I’m wondering if it’s worth it for that 1%. I guess I do need to listen to my heart. I have sat down with GP since this post and gone through potential side effects from Tamoxifen and we decided that I wouldn’t take it.. no onespecific reason. But it is definitely on my mind!

Hi @Ray, the quandry situations are so tricky..do I, don't I! I've been in a similar position when advised to take tamoxifen in 2017 following a lumpectomy for low - med grade DCIS. The purpose was to prevent a recurrence. I was 38 and decided that, with 3 young children, I wouldn't be able to live with myself if I had a recurrence and hadn't done everything possible to avoid it. I took the tamoxifen for 4.5 yrs with very few side effects and nothing that made me reconsider taking it. Kind of gave me a feeling of safety. Unfortunately, it didn't work and after another lumpectomy in November 2023 that also showed a small amount of invasive cancer within the DCIS (same breast), I am now planning a mastectomy. There is no recommendation to take any hormone therapy following surgery. All I can offer is to listen to your heart, do what feels right for you. If you are not sure what that is (much easier said than done!), give yourself the time and space to think it through, maybe write your thoughts down...it can help to put them in to words, sometimes brings more clarity. I'm about to give this a try as i make my decision about single v double mastectomy and reconstruct or not.Good luck with your decision. ❤️

That interesting,I have taken tamoxifen for 5.5 years in total now,with a few breaks,what is the system that works out how beneficial tamoxifen is in a percentage,I don’t think a doctor has done that for me?

https://www.bcna.org.au/resource-hub/podcasts/episode-38-hormone-blocking-therapy-balancing-quality-of-life-and-risk-of-recurrence/

A podcast to listen to in assessing where you are at

Take care

Thank you both for replying. It definitely is a quandary. If my numbers were 5% then I think I would take it. But for 1% I’m still unsure. I did take it for 10 weeks pre-op. Relatively little side effects- strangely my hands ached a little and I struggled to open jars etc. I haven’t been back on it post op as that’s when she crunched the numbers and gave me the choice. I do know that there can be other “unseen” side effects with increased risks of other nasties. But do risks outweigh the benefits for 1%?? Gosh it’s a tricky one. Merry Christmas to you as well ❤️

Hi @Ray - sorry to see you join our select little group xx.   

It is a bit of a quandry with the low numbers ..... should I or shouldn't I?    (I think my numbers were fairly low - around 5% .... and I continued on the meds for 4.5 years ... and am currently considering tapering off them over the next 12 months ...)

You could always just 'try them' for a few months to get that added bit of protection - See if you get any side effects, and fingers crossed, you don't! ...... But if you do, you may then choose to stop taking them, knowing that you gave them a good go.

take care, all the best in making your decision & I hope you have a great Xmas xx

Hi @Ray,  I wasn't in your situation and I continue my treatment. However a friend of mine had a single mastectomy at 40 and chose not to take tamoxifen. She had bx in the remaining breast at 50 and subsequently removed that breast. She is now 61 and doing fine.  Best wishes with your decision.