10 years on Tamoxifen. Scared to stop.

I'm not even thinking about any research, etc, but just that I absolutely understand that fear.

When I almost stopped my AI at 5 years, I felt like I was about to be naked.

(replying under different account/couldn't log into the first one):

Thank you. I called the dr who wrote my last refill and she said I can come in and talk to her if I want. She is over two hours away. I hate to drive all that way only to be told that's it...I have had the Tamoxifen for 10 years and now I'm done. :-/

What's to stop the estrogen in my body from wreaking havoc again. It's how I got breast cancer in the first place.

Thank you, but I would prefer to continue the Tamoxifen. I wish I was able to make the decision to continue, but I'm not.

I am so happy to find this post. I too have recently stopped taking tamoxifen after 10 years. I feel so insecure about this. Surely, there is something else I should be taking. I read somewhere a study that said taking it for 15 years is being studied. Do any of you know anything about that? I have lost my security blanket and I feel so nervous about it.

Thank you for any responses and experiences with this. This group is so helpful.

Faith

coming across this post a while after it was created. Petrified of stopping tamoxifen after 10 years although I have a few to go but they keep suggesting hysterectomy due to bleeding issues and I’m not happy with switching to other meds.

Wondering what you decided..

BetNY- I too have uterine issues related to Tam. I saw my GP a few weeks ago and we talked about the possibility of an endometrial ablation instead of a hysterectomy. I did find an article on the NIH website too. It’s something to think about if you’re continuing the drugs.

To KP2018:

I met with my MO on Monday and asked the same question- what happens after stopping Tamoxifen after 5 or 10 years? I am only 47 and want 40-50 years of prevention. She gave me this analogy:

The ER+and PR+ is like fertilizer for the breast cancer cells. Tamoxifen blocks the fertilizer. After years of it being blocked then nothing grows. I sure hope she's right. I am new to this whole thing. I start Tamoxifen in a week. I am hoping there will be new studies that come out while I am taking it so I know what direction is best. I have been advised to only take it for 5 years.

So hard to know on these drugs. Did Tamoxifen for 5 years 2009-2014 after radiation and lumpectomy. Tamoxifen prescribed, even though I was all ready menopaused. Oncologist said it had been around for a long time, and he had more confidence it than the newer AIs. No detected cancer until 2016, same breast. Was it always there? Had the tamoxifen been keeping it at bay? A new cancer? Long story short, I have BC for the third time .Oncologist has suggested that the Ibrance and Arimidex I now take will probably be forever. Oncoloogist thinks I should consider surgery, but since the Ibrance is shrinking the tumor, and axilla has more complexity than breasts, I am holding off. Concerned about damage to nerves, tendons, muscles, and worsening lymphedema.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

2019 ER+ R-axilla. Initially clot suspected, then lymphedema suspected even though in opposite side. More imaging and biopsy showed 2.5 cm tumor in R-axilla. Ibrance and Arimidex Rx'd. Tumor has shrunk from 2.5 cm Sept 2019 to 7 mm April 2020. Hoping august scan shows more shrinkage.