Uterine problems following breast cancer treatment

I am facing a decision to have a hysterectomy or not and am looking for input to help me decide. Here's my story.
I was dx with breast cancer three years ago at the age of 52. Following a mastectomy and chemo I started on Tamoxifen. In a small percentage of women tamox can cause endometrial cancer. After several months I developed pelvic pain, back aches, constant discharge and occasional slight bleeding. During this time I also had my ovaries removed because of a very high BRCA probability and fear of ovarian cancer. That put me clearly into menopause and I was switched from the tamox to one of the new AI drugs that are replacing tamox for post-menopausal women. That drug was a hellish nightmare for me and after 9 long months my oncologist switched me back to the tamox. We both agreed that while there are other drugs in that catagory that they are very similiar and since my reaction had been so severe it was not worth trying another drug. Which leaves me with tamox only to reduce my chances of a reoccurance. My probability of a reoccurance is high and I am not willing to go unprotected.
While on the tamox the first time I had 2 transvaginal ultrasounds, a biosopy and finally a D & C. I switched drugs shortly after the D & C so I don't know how much pain free time it would have given me.
I have been back on the tamox now for 8 months and a month ago the pain, discharge and bleeding strated again.
I don't want a life of bi-annual D&C's but I'm not sure I want a hysterectomy either. My oncologist mentioned that a uterus is a good "space saver" which lead me to research prolaspe issues. I'm questioning it even more.
Currently women are placed on tamox for 5 years I have 3 to go.
I should also mention that I have fibroids, that I was hoping menopause would shrink. Not happening. Also when I spoke with my oncological gynocologist hypothetically several months ago she said that she "thought" I would be able to have a laproscopic hysterectomy.
I'm not sure what to do here. To complicate things my husband and I run a small business that requires physical work. We are still suffering financially from my cancer and some serious medical issues that he has had. No heavy lifting for a long time would be a hardship, but in the long run doable if a hysterectomy were the best medical option. I have been to breastcancer.org where I found several sisters who faced my decision and are happy they had a hysterectomy.
This is a very long post. Thank you to anyone who actually stuck with it and read the whole thing. And thank you in advance for any insight that anone can offer.
Peggy

Hi Peggy I'm sorry you are faced with this difficult decision. I went through it in the opposite way - had the hysterectomy in 2002 for prolapse first (guess it wasn't saving any places for me, eh?) and since then have been diagnosed with breast cancer twice (in 2004 and 2006). I tried Tamoxifen after the first time, but could not tolerate the side effects - so I can relate to your feelings about these medications. I ended up having to go off of it. I also tried cutting way back on my HRT which I'd been on since the hysterectomy, but had the same type of experience as I had on the Tamoxifen. The Tamoxifen had caused several immediate health consequences which for me outweighed the slight decrease in recurrence risk; reducing my HRT caused the same things and really doesn't change my risk of recurrence anyway.

We have had women here who have had hysterectomies because of being on Tamoxifen and have been glad they did. You might try doing a search here on "Tamoxifen prophylactic" to pull up their posts.

While menopause often does shrink fibroids, the Tamoxifen is likely to make them grow since they respond the same way endometrial tissue does. Tamoxifen acts like estrogen in those tissues, unfortunately. If you're having an increase in bleeding, they may have grown already to the point where a laparascopic hyst may not be feasible - I would get another opinion about that.

If you have the surgery, you will have a period of anywhere between 4-6 weeks to maybe 6 months where you should not do any heavy lifting, so that is something you need to factor into your decision. And I can totally understand the financial aspect of it as well. However, I think you have to look at the risks if you do have the surgery and the risks if you don't, and decide which way the scales tip for you.

Best of luck with whatever you decide to do.

s,
-Linda

Hi Peggy,

I'm knew to the message board thing, I usually just lurk and read so please bear with me. I am also taking tamoxifen after having a lumpectomy(DCIS) and radiation at the age of 35. I am 37 now. I have been on tamoxifen for 2 yrs. and have had several side effects. I also have fibroids with heavy bleeding and pain. I am having a laproscopic hysterectomy on March 31st. They will be leaving my ovaries in because of my age and will monitering me closely. I wish you the best of luck. I know it is difficult to come to a decision, but follow your gut and you will make the right choice for you. On another note- have you had any side effects like weight gain from taking tamoxifen?
Good luck to you, Lisa