Tamoxifen

Hi -- I'm scheduled for a TAH on Sept. 12. Last year, I had a lumpectomy for breast cancer. The tumor was estrogen-positive, so I have been taking Tamoxifen for six months to prevent a recurrence.

Recently, I've had very abnormal bleeding. An ultrasound showed fibroids and ovarians cysts -- all of which are causing lower back pain.

My obgyn agreed with me that a TAH would be best right now. I'm 48, two great kids, great husband, in good health. She also mentioned that the Tamoxifen could be causing the bleeding, which could lead to other problems in the uterus -- including cancer. So, to continue on Tamoxifen and to get rid of my existing discomfort, this all seems to make sense.

Has anyone else had breast cancer, followed by a hyst? Anyone else taking Tamoxifen instead of estrogen?

thanks -- this all gets so confusing!

maern

Bumping this up.

Karen

Hi Maern,

I don't have any first hand experience with Tamoxifen but have seen several ladies who've also been through the same.

You might want to do a search on Tamoxifen which will bring up any posts mentioning it. Also, you might visit the No Hormone Desert Oasis forum if you haven't. Everyone there is unable to take HRT due to cancer, blood clots, allergies, etc. You will find a lot of useful information there also on how we all are coping without HRT.

I wish you the best in your upcoming surgery, please let us know if we can help in any way.

Take care,

Vicki

It's tough when the "cure" has serious side effects. Like Vicki I hang around the Cancer Concerns board and I remember a number of cases of Tamoxifen causing endometrial hyperplasia or even uterine cancer, something the research is bearing out also. If you stay on the Tamoxifen, a hysterectomy is the safest way to go.

I know it's not something one wants to gamble on, but you might talk to your doctor about trying Raloxifene instead of tamoxifen. It also is a SERM, but it supports bone health and lowers cholesterol and doesn't create endometrial hyperplasia. The manufacturer hasn't applied for FDA approval of it as a breast cancer drug, but it in fact works that way on estrogen-positive breast cancer and has fewer side effects.

You can take a look at the research on it at

http://www.ama-assn.org/special/womh...c/joc90196.htm

You could print that out and ask your doctor about it. I know when I read that I was thinking that if I ever needed such a drug that I'd ask about Raloxifene.

But the conservative route would be to have the hysterectomy and stick with the tamoxifen for the five years post-lumpectomy.

I have been on Tamoxifen for 2 1/2 years. I am having a TAH/BSO on 9/14. I had breast cancer 3 1/2 years ago and had a mascetomy. I was 38 at the time. Now I am trying to prevent breast cancer, ovarian cancer, cervial and utrien cancer.

My cancer was also Estrogen Postive. This is 2 folded because not only am I at risk becasue of having my ovaries but ALSO, a side effect of the Tamoxifen is Uterin Cancer. So far I have not had any problems except for a slight thickening of the uterus but, I have had Biopsys, and D&C's every six months and my doctors (GYN and Oncologist) feels its time to take it out.. The other problem I have is that I am positive for the BRACA2 Gene. This gene can cause breast, uterun, ovarian and a number of other cancers. So as a prevention I am having this surgery.


I have not had any problems with the tamoxifen. I think of it as a "Security Blanket" and hopefully this surgery will be too.

I too will be going throught the no-hormone oasis after surgery and hope to do as well as a lot of the ladies on this website are saying.

Good luck to you.

I AM 38 YEARS OLD AND HAD MASTECTOMY MARCH 2000. I BEGAN TAKING TAMOXIFEN IN JUNE 2000 AND IN SEPTEMBER 2000 BEGAN EXPERIENCING INCREASED BLEEDING AND HAD MY PERIOD 3 OUT OF 4 WEEKS A MONTH. HAD ULTRASOUND AFTER ULTRASOUND WITH NO OBVIOUS REASON FOR BLEEDING. MY GYN CONTINUED MONITORING ME MONTHLY. MARCH OF 2001 BEGAN HAVE SEVERE PAIN FOR FIRST 3 DAYS OF PERIOD. CONTINUED FOR THREE MONTHS AND IN JUNE 2001 HAD LAPORATOMY WHICH INDICATED SEVERE ENDOMETRIOSIS. MY ONCOLOGIST STATED THAT SHE DOESN'T BELIEVE TAMOXIFEN CAUSED MY ENDOMETRIOSIS BUT BELIEVES IT MADE THE ENDOMETRIOSIS GO HAYWIRE. I WAS PUT ON LUPRON SHOT (WORST EXPERIENCE EVER) AND AFTER THREE MONTHS AM SCHEDULED FOR HYSTERECTOMY ON 9/12. I CAN'T BELIEVE I FOUND SOMEBODY WHO SORT OF IN MY SAME SHOES AS FAR AS TAMOXIFEN. I'M JUST NERVOUS OF THE WHOLE PROCEDURE. I MEET WITH MY GYN NEXT WEDNESDAY TO GO OVER COMPLETE DETAILS. MY BIGGEST QUESTION IS HOW LONG I'LL BE IN THE HOSPITAL AFTER THE SURGERY. SORRY FOR THE RAMBLING.

Dear Terf,

I'm sorry to hear of your problems -- you're a whole decade younger than I am! You shouldn't have to deal with this stuff before age 40!

Whatever. I think your experience sounds similar with Tamoxifen. After a few months on it, changes took place in the uterus that might have taken place anyway, given more time. My dr. agreed that the Tamoxifen can aggravate an existing situation.

Like all HRT, Tamoxifen has its risks. So, for that matter, does estrogen. When you've had cancer, you tend to understand the meaning of risk and go for the best quality of life long-term.

There are all sorts of anti-Tamoxifen websites, just as there are anti-hormone and anti-hyst and anti-chemo websites. I still believe Tamoxifen has saved lives. Perhaps yours and mine, even. Without it, would we have developed cancer in the other breast?

I wish you all the best and a swift recovery. My understanding is about 3 days in the hospital is tops after a TAH. My experience with two C-sections was fine, so I figure this time, I won't have to be getting up at night with a baby!

Take care.

Maern

I am feeling a bit angry. When I was taking Tamoxifen for 7 years, my oncologist seemed very unconcerned about the side effect. There was a time that I bled for 17 days. That was when I decided to stop takin the drug.
I was 46 when I had the mastectomy. I am 62 now, so I guess I should be grateful.
I have never had internal surgery before, so needless to say I am a bit anxious.
I've been researching hysterectomies on the internet, and see that some are done vaginally, others not. Is this due to the individual case, or is it the Dr's preference? I'll have to as the nurse Tues.
I will wait to hear how you are recuperating. We'll compare note.
Good luck!!! Brighton4

Hi,

No first-hand experience with Tamoxifin, but surely have been by my Mom's side in her experiences.

She had a mastectomy in 1987, but the tests to see about the estrogen dependence of her cancer weren't done. She underwent 3 chemo treatments, and much against her Dr.'s orders, said "no thanks" to any more. She said that life expectancy in her family wasn't long any way, and she didn't want to spend what time she might have left being so sick. Well, that was 14 years ago and she's still very much with us!!

Mom started taking Tamoxifin as part of the trials. Mom was post-menopausal. Two years after beginning the drug, uterine cancer was diagnosed and Mom had a hysterectomy. She knew the risks of possible uterine cancer, but still feels the risks were acceptable to her.

She has just recently (in Feb.) quit taking the drug. Mom and her surgeon have had many heart to heart talks about the effects of Tamoxifin, and the bottom line is that for my Mom, we all feel it has helped her to stay alive. There has been no spread or reoccurance of the disease (except the uterine cancer).

Everyone is different. Everyone has to very much make their own decisions. But I just had to reply to this post because of my Mom's good experience.

Wish you the best.