Tamoxifen has become an issue

[europa]

I am having a horrible time with Tamoxifen. This year alone I have had 4 emergency D&Cs for uterine polyps. I hemorrhage uncontrollably and end up in the ER. Now, today, I spent my whole day in the ER because I felt a horrible pain in my leg that turned out to be. Blood clot caused by Tamoxifen. So, I on a blood thinner for 3 months.
And now I need to figure out just how important Tamoxifen is for me. If I continue on Tamixifen I will continue to get polyps and if I hemorrhage while on the thinner, I could bleed out much faster and it could be deadly. If I stop Tamoxifen, I would need to get a full hysterectomy and oopherectomy and switch to Arimidex. Zoladex or Lupron is not an option as I tried that and had a horrible reaction to the drugs.
So I feel stuck. Advice?

[jaykay]

I feel terrible for you. No advice, but a second opinion is called for as to the benefit of tamoxifen for you. I had an awful time on tamox but nothing compared to what you've been going through. I'm kind of surprised that your doctor is still allowing you to use it. As you stated, the side effects can be life threatening.

Best
Janis

[Crn]

Your ER and PR levels seem on the lower side. I might ask for a Tamoxifen risk/benefit assessment from your doctor. Wishing you better days ahead, Cindy

[jra40]

I was in the same boat with Tamoxifen but not as severe as you. I decided to do the full hysterectomy with ovary removal and move to Arimidex. I am so happy I choose that route - feel great and no problems so far with Arimidex. The hysterectomy was about 6-9 weeks recovery but now I'm back doing yoga, have no pain, and feel an inner comfort knowing I did the right thing for myself.

Good luck with whatever you decide - feel free to PM me with any questions.

Jessica

[Lucy]

Bless your heart. It's always something, isn't it? I had the risk assessment discussion with my oncologist last month. Like you I am low ER positive (I'm PR negative though). There's not a substantial benefit for us taking hormone blockers, according to reports. Since there could be some benefit though, you have to weigh the risks to the benefits. However, something I had considered and my oncologist gave it some weight is that, at the end of the day, should you have a recurrence, the HER+ is more of a threat than the ER+. I think Janis is right and that you should get a second opinion and discuss all the possible options and then make the decision that is right for you. Good luck and keep us posted. (sending cyber hugs)

[Laurel]

Europa,

With an ER status of 10% and PR of 5% I just do not think I would continue on the anti-hormonal therapy especially with all the associated side effects you have experienced. The benefit vs safety issues seems clear to me. Is your Onc. pushing you to continue? I'd dump that crap in the nearest crapper and go on with living. You have done nearly 3.5 years of Tamoxifen which is commendable for anyone and hugely so in light of your many complications.

[Becky]

My sister had dcis so she had lumpectomy and radiation. Then Tamoxifen. She also got a blood clot and was in the hospital for a day on Heparin to bust it up and then warifin. She can never take Tamoxifen again and nor should you. She was highly erpr positive. Her onc wanted her to get an oophorectomy but she didn't have insurance and was tapped out money wise because of the surgery and radiation. That was 4 years ago and she is ok but due to high erpr I feel she is still at risk. She is 53 now but not quite thru menopause but I keep urging her to take Arimidex as soon as she can. I just want you to know that if blood clots happen with tamoxifen, stay away from it. I did get my ovaries removed to be on Arimidex because I got eye floaters from tamoxifen and it scared me.

[Juls]

Oncologist gave me Tamoxifen about 2 years ago. When I got home I read the side effects to find blood clots an issue (Family history of blood clots) so contacted my Nurse and said I was not keen on taking. Eventually Nurse & Oncologist agreed to put me on Femara. At first they were not keen because less than year since last period. They then told me that Femara was the drug of choice!! Talk about mixed messages! I have now been on Femara for 2 years & main side effect is stiff joints.

[europa]

Well, we have a plan. First, I am no longer taking Tamoxifen. Secondly, I will be going through a hysterectomy and oopherectomy. I will then start Arimidex and see how that goes. I have to wait until I'm theraputic on this blood thinner before I can attempt surgery since I have to be off the thinners for 3 days prior to surgery. But at least we have a plan.

[Carol Ann]

It sounds like a good plan!

Carol Ann