alternatives to tamoxifen for est + breast cancer

I am a premenopausal woman interested in finding alternative treatment options for estrogen receptor positve breast cancer. Is there another option that might work to help increase my odds for survival other than tamoxifen? I am interested in hearing about anyone else's experience in this area.

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i am also a premenopausal woman on tamoxifen. why do you want to find alternate to tamoxifen?are you having side effects?

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I haven't started taking tamoxifen yet. My doctor would like me to start after I finish my radiation treatment. I have several reasons why I want to find an alternative to tamoxifen. Increased risk of ovarian cancer and liver cancer is part of it. Bone loss, increased chance of depression also. I am worried about what life would be like with my estrogen blocked, like being pushed into menopause. The most difficult thing I think for me is that I would have to wean my daughter. We have a wonderful nursing relationship that I didn't want cancer to force it to come to an end.

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I also was concerned about the possible risks of taking Tamoxifen, so I discussed this thoroughly with my oncologist and other breast cancer patients and read everything I could get my hands on. It's not clear whether I'm postmenopausal, so I would need ovarian suppression to take an aromatase inhibitor. I didn't want to do that, but I wanted to ensure that Tamoxifen was the better option for me. I was concerned about the fact that Tamoxifen is associated with an increased risk for blood clots and uterine cancer.

You mentioned bone loss and liver cancer. Actually, studies have shown that Tamoxifen can help to protect bones: it increases bone density and can reduce the risk of fractures. The aromatase inhibitors like Arimidex, however, do tend to decrease bone mass and increase the risk of fractures. Also, Tamoxifen isn't known to cause liver cancer in humans (just in certain strains of rats). But it can sometimes cause other liver abnormalities in some women, so if you do decide to go w/Tamoxifen, your doctor may periodically order liver function tests as part of your bloodwork.

Ultimately, it became clear to me that the benefits of Tamoxifen truly outweighed the risks. The only side effect I've experienced has been an occasional hot flash and night sweats, which is nothing compared to the side effects of the other meds we've had to deal with! My doctor wanted me to take a very small dose of an SSRI (antidepressant) to help minimize such "menopausal" side effects, and I believe that it really has helped.

Be sure to speak again with your doctor about all the options that may be available to you--and, if you haven't already, tell your doctor how difficult this would be for you and your daughter. My oncologist wanted me to be on the SSRI for a few months before starting Tamoxifen so that, should there be any issues, it would be clearer which med was responsible. Therefore, I didn't start taking the Tamoxifen immediately after I completed my chemo. If you do plan to wean your daughter in a few months, perhaps your doctor would be willing to consider developing a plan that he/she feels is appropriate where you could wean your daughter when you're ready, but you can still get the essential benefits of Tamoxifen. I hope that this helps even the smallest bit! Best wishes to both you and your daughter.

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i have been taking tamoxifen for the last year. i still get my period on a regular basis. i think i feel pretty good. i take a aspirin everyday to prevent the clots. as for the other side effects....so far so good. i think it is improtant to prevent this from coming back, so i agree that the benifits out way the risks. i do not know too much about nursing and tamoxifen. that you should discuss with your oncologist. i, as well, had just given birth but with all the trauma of the diagnosis i stopped feeding.

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Hi, I can certainly relate to all of your concerns, I have been on Tamoxifen for a while now. Being post menopausal, they first put me on Femara. That was bad for me, my bones and joints ached all of the time. The only problem is that there is going to be some sort of side effect with any cancer treatment we receive. Unfortunately, we have a choice to live with the side effects or possibly have a reoccurance. For me, the choice is clear...I want to see my grand children grow up. I know that breast feeding is important to you, it is the only thing that you yourself can provide your child. On the other hand, you are the best mom she can have also. If it were me, I would want to see her grow and nuture, not breastfeeding is a small price to pay.

Good luck with your tough decision. Remember that a positive attitude, Faith and prayer will see you through.

Susan

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Thank you for sharing your story with me. I don't know how long I can safely postpone taking tamoxifen if I decide that I am going to take it. At least my doctor will allow me to complete my 6 weeks of radiation treatment before I begin. My gynocologist whom I saw today for uterine fibroids said another option for me could be having a hysterectomy with ovaries removed. That would eliminate the estrogen and I wouldn't have to worry about coming down with uterine or ovarian cancer. Since I have a history of polycystic ovaries that puts me at higher risk for ovarian cancer. I would still be able to breast feed. It would put me into instant menopause though. I don't plan on having any more babies. I am not sure which would be the better option. There may be other options I just don't know about yet. Thanks for listening.

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Hi Susan:

Thank you for your comment. Yes it is a tough decision. I feel like I have been through enough already with the surgery and chemo. Next will be radiation. It has all been a huge sacrifice as I am sure you know because you have gone through it, too. My gynocologist mentioned hysterectomy with ovarian removal as a possible option. But I don't know. That may be worse side effects than the tamoxifen. Do you know anyone who has had their ovaries removed who might have some input?

I pray a lot these days and try to have a positive attitude. Maybe God feels I have sacficiced enough. I wish there was some way God could tell me if I could live without recurrence with the things I have already done. I am exercising to reduce estrogen levels and am reducing the meat and animal protein in my diet to try to reduce estrogen as well. Beth.

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Hi BC Girl,

Wow, you had just given birth and learned about your diagnosis. That must have been very tramatic for you. My heart goes out to you. I wish you and you baby the best.

I am a long term breast feeding mom. I've been nursing constantly for over 5 years with two kids. I tandem nursed after my youngest was born. I went through the pumping and dumping and waiting one week to nurse while on chemo. I all but dried up in the process of it all, but my daughter's suckling brought it back. I know that now I won't be having any more babies so I wanted to hang on and wait til she weans on her own. If I decide to take the tamoxifen I will have to wean her in 6 weeks or so after the radiation is done, as it is not compatible with nursing. It is taken daily rather than every 21 days like my chemo was.

Thank you for sharing your story and God Bless you.

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As you're reducing your animal protein intake and if your cancer is er+, do NOT substitute with the artifical meats made with soy, things like the non-animal bacon and veggie burgers. Soy protein acts like estrogen in the body. There are still ongoing studies on this product but the initial results are worrysome to those of us that try to avoid ingesting anything that would feed the cancer.

I became an avid label reader after being warned about this by my PA and discovered that it's tough to find most anything off the shelf that doesn't contain some soy. Also, after the trans fat scares, most restaurants fry anything in soy oil! Even my favorite fast food, KFC!!!

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My cancer is er+. Do I have to avoid any thing w/ soy?

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If you can put this address into you browser and and read the unfamiliar words, this gives both sides of the story, pretty well, as to the issue with soy beans:

http://www.vegetarian-nutrition.info/vn/soy_breast_cancer.php

The short story is, the jury is still out and no definite decision has been made. However, I avoid anything soy as well as I can, just in case. Besides, it gives me a nice excuse to have my strip of bacon once every week or two. Beyond that, you'll have to make your own decision and whatever guidelines your doctors give you.

It was my doctor that first brought this to my attention and suggested that I eat as little soy as possible because, being postmenstrual, I don't need the problems that adding anything estrogen would do to my cancer and treatment. He also suggested that I limit my red meat intake, increase the fruits and vegatables and the main thing is to excercise. I'm still working on the excercise part...

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I am now postmenopausal, but I was either pregnant or nursing for 11 years in my younger days. It may help to remember that nursing becomes less important for nutritional reasons as your baby eats more solid food, so the chief benefits are the psychological/emotional ones for both mother and child; equally important, but these can be supplied in other ways. I know several women who have have had their ovaries removed. It used to be standard treatment for women before tamoxifen and other drugs came along. I think it is wise for all women diagnosed with breast cancer before the age of 40, esp. if they have a family history, to be tested for BRCA gene modification. I have a good friend with the BRCA 1 gene modification now suffering with ovarian cancer 16 years after having breast cancer at age 39. Her mother also had breast cancer at 39, but is doing well in her 80's because she had her ovaries removed. It certainly will throw you into menopause, but ovarian cancer is tragic. Also wondering if you will be able to nurse on that side during/after radiation? It definitely alters the breast, affecting normal as well as cancer cells. The skin can become very tender. The chief problems I had with tamoxifen were leg cramps, plus I have a strong family history of heart disease. Careful medical monitoring is necessary. Let us know how you do, and God bless.

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Hi Hawk, I know I'm late to this discussion, but I'd be interested in knowing what you decided. I was diagnosed a little over 5 years, er+. I underwent chemo and mastectomy. I was 26 and had no children. I started Tamoxifen afterward, but took it on and off (I was always looking for alternatives). After thinking I wasn't going to be able to get pregnant, I am finally, blissfully 6 months pregnant with my first, and everything is healthy. I stopped taking Tamox when we started trying, but my doctor has pretty much insisted that I get right back on it asap after the baby comes. We have agreed that I can breastfeed for two months, but that's it. I am heartbroken, and have been looking for ideas and information and support from other women. His rationale is that I should be alive for my child -- I think, duh. But I am not 100 percent convinced that Tamoxifen is the only answer. In fact, now that there are studies showing that breastfeeding can help reduce the risk of breast cancer, I'm wondering if maybe I should ignore his advice. Sigh.

What did you end up doing? How are you doing? Love to hear from you.

Hael.

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I am writing because I too am concerned about Tamoxifen. I have recently had my third recurrence and the docs prescribed me Tamoxifen about 40 days ago and the side effects are horrible. I have abdominal cramps, bloating, constipation, loss of apetite and a depressed mood as well. I am really eager to try an alternative. Has anyone used or heard of Indole-3- Carbinol supplements? They are supposed to contain the natural chemicals found in cruciferous vegetables. And what about progesterone cream? I'm pre-menopausal, so I'm not sure it's appropriate. Anyway, any advice would be welcome!

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I was diagnosed with estrogen receptor positive invasive breast cancer. Another alternative to tamoxifen is Arimidex. I am on Arimidex instead of Tamoxifen. Some side affects of this drug are muscle and bone aches. Check with your oncologist since new studies have shown positive results for premenopausal women. Arimidex is newer than Tamoxifen. May God bless you in your fight against this disease.

Kate

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Hello,
Sorry to hear of your situation. Not that any of us have an easy time making these decisions, Being around to see your daughter grow would be my choice over breastfeeding, as someone else mentioned.
I just got off the phone with my Oncology doc, I am stopping the tamoxifen after 6 weeks on it because I thought I was going to lose my mind, or end my life. It's the thought of my daughter that keeps me strong enough to work my way thru this. I know that my breast cancer was a wake up call to change my life, and I am finding help thru meditation,visualization, reading Carolyn Myss,Colin Tipping, who thinks that every woman who has breast ca, is a woman with a broken heart. The tamoxifen risks are different for pre vs post menopausal women. And the risks of bone and joint issues, liver & uterine cancer, risk of eye problems, blood clots, stroke, loss of sex drive, quality of life, in trade for something that will help keep it from coming back in the breast. My choice to get off of it is no doubt mostly driven by the manic nature of these past few weeks. I have never been someone who tolerates drugs very well. But one of the things that really got my attention this past week, when I started re-reading everything about the drug, and asking my smart medical friends for their opinions, it does not change mortality rates in the long run.
Maybe I am also just tired of feeling like a bio-chemistry experiment.
I do know I slept better last night after skipping my dose and deciding I was done with it. And I have come to trust my gut instincts where this whole business is concerned.
I wish you good health and many happy years with your daughter.

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I was premenopausal when I was diagnosed with e+ stage IIB breast cancer in 2001. After surgery and radiation, I took tamoxifen for five years and now have been on arimidex for four years.
The tamoxifen put me into menopause immediately, so I went through about two years of hot flashes and night sweats, which were annoying. Life has been better since then.
My oncologist checks my bone density, which (knock on wood) is great. She also put me on anti-depressants when I described how I was feeling at the end of 2002. I don't know if it was tamoxifen or menopause or cancer or stress of another kind - but the anti-depressants are great! Have even almost cured my road rage:-)
From everything I've read and experienced personally, it's pretty clear that everyone's body is different, and there is very little that predicts how a specific individual is going to react to medication.
I was very fortunate and continue to be grateful every day for the gift of life.
I wish health and happiness to you, too-
Dale

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I'm a postmenopausal woman who's been on tamoxifen
for almost 2 years. Went on it as a preventative due
to lobular hyperplasia.
I've had abnormal bleeding & my Dr. has taken me off it.
I know gave to have a D&C as there us thickening of the
uterine wall.
Believe me, it's scary not knowing what this is or if I'll
have to have a hysterectomy.
Have been doing research to alternatives. Will be put
on another drug as tamoxifen has obviously been the
wrong drug for me.

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