Taking a break from Tamoxifen

I started a year late. By then I knew what was and wasn't a SE. Just came off Femara after seven months and went back on Tamoxifen. For me it is easier and my main SE is HFs.

From the start, I was very ambivalent about taking tamoxifen, constantly worried about long term damage to my body and accelerating the aging process. I was also going through perimenopause and didn't really know what effects were from that and which were from the tamoxifen. I had to know, so I did experiment to try to figure it out. About 7 months into taking it, I took a self mandated 6 week break from it, mainly because of sexual side effects. I had developed a numbness down below, a lack of response and sensation, which really was upsetting me. This effect did let up by the time I restarted the tamoxifen, as did some of my joint pains, but then I developed new joint pains in other areas. I eventually ended up quitting the tamoxifen altogether after 3 years. Tried Aromasin, then quit after 2 months, because I really did not want to take an AI and wasn't willing to put up with increased aches and pains, as well as being drier all over. That was almost 3 years ago. I do feel like my sleep did improve somewhat, my immunity is better (frequent colds and eye infections while on tamoxifen, now better). My oncologist had only recommended 5 years of medication. I was 47 at diagnosis, now 55, and I occasionally worry about cancer coming back, but I am doing a lot of prevention by keeping up with my exercise routine for the past 8 years and having improved my diet and some things in my environment.

Sjacobs146, I understand that new guidelines say 10 years for SOME people, but not for all as a blanket standard of care. Both the JJ and I are Stage 1a with no nodes so I was curious that her doctor recommended 10 as mine didn't think it was necessary for me in my situation. I was wondering if there were other factors in her pathology/case/history that had JJ's doctor feel she needed 10?

Sorry to hear about your metastasis, Goodie16. Glad treatment seems to be working for you now. . I'm curious why your MO wouldn't switch you to an AI since I keep hearing that it is superior to Tamoxifen?

How did they discover your brain met? I'm assuming you would not have had regular scans at your stage?

I'll have to ask my onc if his advice on 10 years for me has changed since my last visit almost a year ago. I honestly don't think I would continue anyway. I personally feel okay taking the statistical risk. BC is such a crap shoot. I'd rather not have 10 years of tamoxifen toxicity build up for what I feel is a statistically small chance I will metastasize. I know I'm probably jinxing myself right now. :P

Thanks for explaining Goodie16. They didn't do any scans on me prior to my mastectomy (nor after). Interesting how each place can be different.

Regarding the tamoxifen, I understand you can only be pre meno to take it, I am surprised they didn't suggest ovary suppression or removal. Not that it would be better..just that it seems like that's what most MO's would do based on people's experiences they have shared here. Again, interesting..but also glad that care is individualized - which it should be.