Anyone continuing on tamoxifen after 10 years on it?

61mariab

HI all....this is my first time posting because I'm trying to find anyone who may be on tamoxifen for more than 10 years. I started on tamoxifen because I was pre-menopausal and I had no side effects from it. After 5 years, my oncologist suggested 5 more years. After the completion of 10 years, he urged me to started an AI, so I went on arimidex. I read all sorts of nightmare stories about it, and it took me 6 months to gather the strength to try it. Took it for 3 weeks and couldnt bear the side effects. I was constantly beyond exhausted, felt pain in my knuckles, experienced insomnia and had flashes in my eyes. Went off, waited about 6 months and then started aromasin. After 2 weeks, I experienced similar side effects, so much to my doctor's dismay, I started cutting those pills in half (to a 12.5 dosage). But the side effects continued. I wanted to go back on tamoxifen, my doctor didnt know anyone who was taking it post 10 years, so he didnt agree.

I decided to get a second opinion and went to an oncologist at Sloane. She too recommended an aromatase inhibitor. When I told her all about my symptoms on them and my wanting to go back on tamoxifen, she gave me the green light and said 10+ years on tamoxifen is better than not taking anything at all. So I went back to my oncologist and he gave me the scrip, and I've been on it for about 11 years or so now.

Just went to obgyn for my annual pap and sono. Sono showed increasing lining thickening (as has been continuing) and increase in size of fibroid.....I think it's at 7.5 cm. Now I have to have a procedure to check for polyps.

Obgyn does not recommend that I stay on tamoxifen indefinitely, as is my plan. He doesnt know anyone on it for longer than 10 years, nor do both oncologists.

So I'm wondering is there anyone out there on it for longer than 10 years?? Or I am the only one!

Michelle_in_cornland

If you continue to take Tamoxifen, you may need a hysterectomy//oopherectomy. What stage and grade was your diagnosis? It is hard to understand the benefit of continuing to take Tamoxifen, without the appropriate context of why you are taking it.

Heidihill

I know of one Stage IV woman who was taking it for 17 years. She had had an oopherectomy beforehand. 

61mariab

Hi thanks for replying....I don't know why any of my diagnosis information didn't show up on here .....but I was stage IIB grade 3, 4 out of 10 lymph nodes, had a double mastectomy, ac and taxotere, radiation.

2 oncologists wanted me on the AI after my 10 years on tamoxifen but I just can't tolerate them. My rationale is that it's better to continue being on something than not be on anything. They agreed as long as I am closely monitored by obgyn. Now he is concerned.

No one ever brought up a hysterectomy (my onc, breast surgeon and obeying were opposed to ovarian removal) ..... I guess I will consider it!

Carla-Faith

I just finished taking tamoxifen for 10 years. My doctor didn't mention taking anything. I would like to take something. However, I too had a fibroid grow to 7.5. I am so scared because she said it could be a uterine sarcoma due to tamoxifen. I am absolutely terrified. Did you find out if your fibroid was benign. Please help. I am terrified.