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I am 43 and have been grappling with the recommendation for a hysterectomy for the past year. I have been taking tamoxifen for 3 years to avoid breast cancer recurrence (had surgery, chemo & radiation in 2000). Since finishing treatment I have been fine except that in 2001 a 1.5 cm fibroid showed up on a sonogram. Now it is 6.2 cm in diameter and my uterine volume is 320 cm3. I have no pain or any other symptoms from it, and ever since chemotherapy my periods have been really light (2 days), but my oncologist is urging me to have a hysterectomy plus oopherectomy as a pre-emptive strike-- since breast cancer patients and tamoxifen users are at increased risk for gynecological cancers. According to what I have read, tamoxifen users also have slightly higher risk for uterine sarcoma -- but it is very rare. I do not want to underestimate the risk, but on the other hand, there is no evidence of malignancy so far and I am hesitant about removing parts of my body just on the "what if" hypothesis.
I do not have children and hysterectomy of course would slam that door shut forever, and I'm also concerned about the side effects of premature, surgical menopause. I would really prefer just to remove the fibroid (there is only one, it is subserosal) but most doctors I have seen think this is silly at my age. I have gotten second, third, fourth, and fifth opinions and it really bothers me how cavalier most of them have been when it comes to the reproductive organs of a forty-something woman--the attitude is just, get rid of them all, make it one-stop shopping!
So, I am wondering if there are any other tamoxifen users out there and what you all have experienced.
I hear you Lisa.. ..though I have not been a tamoxifin user,
I too was told point blank to have a hysterectomy and was also basically berated on my attempt to find an alternate solution at the age of 40 w/o having had children.
When I see a woman on these boards post about minor size fibroids, I tend to suggest the Mirena IUD to them. It is a hormonal IUD containing only progestins and in amounts lesser than a birth control pill. I hear that in a number of cases it stops the associated bleeding, pain, and can even reduce the size. When I see a woman post about larger size fibroids, I tend to keep quiet. A Mirena can't be placed if there's too much obstruction.
I was just reading an article the other day.. and I believe it was based on the comments of a doctor.. about how many doctors don't like to do myomectomies because they are time-consuming and don't provide quite as certain results.
I have also read how breast cancer patients have used the Mirena IUD as a safeguard against cancer possibilities caused by tamoxifin. It can also reverse endometrial thickening.. I have one for hormonal precautionary measures.
You may be aware that chemotherapy can have adverse effects on fertility.
As an endometrial cancer survivor who opted against surgery, you sure have my sympathy (you would have anyways : ) )
Your solution may not be as easy as mine, but I sure wouldn't blame you for trying.
I have had uterine fibroids for about 7yrs. I was told at that time, and at each annual exam, if I wanted relief, I needed a hyst. I saw a few doctors, and finally found one that said if I could live with the symptoms, there was no problem in doing that. So that's what I've been doing, even though the problems associated with the fibroids have been getting worse over the past few years. I'm also a 2-time breast cancer survivor. I started taking tamoxifen 6mos. ago, after my recurrence. During that 6mos, my fibroids have grown and my uterine lining has thickened. My periods have gotten really bad and they were pretty heavy before. I kept hoping that the tamoxifen would put me into menopause, I'm 45, and that the fibroids would shrink, so I could still avoid a hyst. It looks like the opposite is happening. I've finally decided, after 7yrs, to have the hyst. My oncologist said that if they remove the ovaries, they will, I won't have to take the tamoxifen anymore. I'm not sure I'm happy about that, but I'll discuss that again with him after the surgery. I was never a good candidate for the tamoxifen to begin with, because I have a history of uterine thickening, heavy bleeding, etc. I decided to take a chance and try taking it. Now I'm hoping that this surgery will not only give me relief from the fibroid problems, but also reduce my estrogen, thus reducing the future bc risk. I hope this has been some help to you.
It's me again! Just wanted to let you know that I also encountered reluctance to do anything other than a hyst. I researched myomectomy, 7yrs. ago, and asked my current gyn. about it. He said it was risky; but I've since learned that most doctors don't recommend a procedure unless they do it. And there definitely is an attitude among doctors about removing everything if you're a certain age or done with your family. It's not right, but it's out there. I have a lot of pain throughout the month, very heavy periods-I've become anemic-back pain, lots of other stuff. If you're not having problems, maybe you could consider the myomectomy. It's not any spot to be in. And when you throw in a cancer, it just makes it all the more complicated. I wish you luck,
The Mirena IUD sounds like a very interesting option, Pat. I will ask my gynecologist about it. I am living in Brazil, though, and sometimes it takes a while for new treatments to make their way south of the equator. How long has it been around?
Dorene, your situation sounds difficult. If I were having pain and bleeding, I would be thinking differently about the hysterectomy option. Sometimes I feel so betrayed by my body. When I had surgery for breast cancer, they gave me the tumor encased in its paraffin block. Such an itty bitty, nondescript thing, it looked so harmless. It was odd to think that this tiny piece of tissue had been threatening my life.
About your periods-- in my case, they used to be pretty heavy, with very bad cramps. I could only use super-plus tampons. But chemotherapy changed that -- now I rarely have any cramping at all and the flow only lasts 2 days. Did you do chemo? Also, I'm curious as to why you were only given tamoxifen after your bc recurrence. Was it because of your history of fibroids? I'm wondering about the fibroid-tamoxifen connection. I have read that the endometrial thickening that Tamoxifen causes is often benign (my case so far, according to an endometrial biopsy I had in December) but I have combed the internet for information about tamoxifen and fibroids, with no luck. All the literature on fibroids stresses that they are benign, but the literature on uterine sarcoma admits that many times sarcoma is only diagnosed after surgery for what had been thought to be a fibroid.... what's a person to believe?
I'm not sure why I wasn't given tamoxifen after my first bout w/bc. That was 6yrs. ago, and I had DCIS, so maybe that played into the decision. I know when I had a recurrence last year, my breast surgeon questioned why I hadn't been taking it all along. And this time, my onc. wasn't sure if I should take it, because of my past history of fibroids, thickening of the uterine lining and heavy bleeding. Before I decided to try the tamoxifen, I considered a hyst, but ultimately thought the least invasive approach was the tamoxifen. You'd think I'd feel better about my decision to have the hyst, considering everything that it will do for me, but I don't. I just try not to think about it too much. Best of luck to you.