Terrified of TAMOXIFEN

Hi all,

 I am 59. Was diagnosed with IDC 5 months ago. Had a mastectomy of my right breast and instead of Tamoxifen, they prescribed post menopause women with Arimidex. Does basically the same thing. Well, after only 1 month I broke out in horrible hives from my neck to my waist (back, arms, everything). So I found out that this hormone therapy can have this side effect and had to quit it immediately. I am doing only alternative therapies. Trying to stay Alkaline (vegetarian, no sugar etc.). I take amune boosting vitamins and also taking an herbal remedy called Essiac. I refused Chemo and Radiation. I exercise every day and have lost weight but look good :0)  Of course my doctors all think I'm crazy but it's working!  I wish that more women would try alternative therapies. If you do your research on how harmful chemo and radiation are, you'd be shocked.  Good luck all.

I'm not an M.D., so I would have to Google this, which you could do too. I would only consider information from .edu or .gov sources to be pretty reliable. Not what Suzanne Somers says.

I'm not suggesting an unknown factor, but the very same factor that showed that when HRT therapy was widely discontinued, the breast cancer rate dropped significantly.

JK13 - As it is I did google it but there are many, many situation where estrogen goes up and down and all kinds of theories of why that occurs and for what reasons...  There is no such reference to "too much" estrogen, it's a misnomer - they have what are called normal limits but nothing that says what "too much" is and when estrodial might be a health problem.. Not in any research I could find.. The reason for my asking is that your statement suggests that we (humans) could have too much of a product produced in our body naturally for purposes we can only begin to understand yet there is no real test of what "too much" is -- No real understanding of excess. 

Tamoxifen was originally tried as a birth control device and when it was suggested for use as a hold down of estrogen in the body everyone celebrated it UNTIL they discovered that not only could it keep estrogen number down BUT it could also cause or encourage OTHER cancers..  Our family celebrated Tamoxifen when my father (who by the way had very low levels of estrogen - considered by doc's as normal for a man) was put on it after a mastectomy... this was before the 5 year limit was put on Tamoxifen's use and he was actually told by his doc he would be on it his entire life..  When the 5 year limits were put in place we were very discouraged to hear that he would now have to relinquish Tamoxifen and within 2 years he had bc yet again only this time it was Stage IV... Initially we were angry that he had been taken off of Tamoxifen until we realized that it was potentially the Tamoxifen that encourage another cancer (that's a suggestion of some of the research).. not only was it in his breast but also in his liver and bones and he had been followed by doc's for years ,without any negative test results, with the same procedures that were put forth for women..  That is, in fact, why the 5 year limits are put on Tamoxifen (who's to say that it shouldn't be 2 or 3 years before there is a problem - we don't really know that either).  So was it the Tamoxifen that was keeping the bc at bay or was it the Tamoxifen that help to encourage the other cancers??  Or are both discussions correct?  I feel that this is the same circular situation that Estrogen creates in the bc treatment dilemia..    Women (and men) should always question whether a product is "safe"!  This is one product IMO that we should be leary of (perhaps not terrified of)...  Best, Deirdre

But the logic can again be circular!   Perhaps there is more cancer after menopause BECAUSE the estrogen goes too low, as a matter of common sense this is actually the better of the two determinations.  Without any research that is the first conclusion that should be approached yet it is the giraffe and not the horse hooves that are pursued!!  Something is amiss - logic and common sense is amiss..  We both know that research can be pushed any way to match whatever results we want, but that isn't how science is suppose to proceed.  Pursue the most common out come first with the safest approach and without any conflict of interest (in this case the safest estroil instead of a synthetic estrogen)..  And if you might suggest that the HRT was a replacement for the lost estrogen that I would challenge with the most unsafe estrogen (identified by medical science) was used in the HRT research .. Circular - so yes be leary of all things coming at you with a white coat (or Pink for that matter)..  I am truly less afraid of the beast than the cure in this day and age...  It's been too long and it appears that by supporting such organizations like Komen we might be feeding a beast of a different color ! Just my opinion, but I need logic and common sense again before I would support any agency (I will however, and do, support specific research - that I determine is real research and not something designed to have a specific outcome) that suggests they want to help "cure" cancer.

Thanks!

Dawn you eventually will go through menapause and your estrogen levels will deplete. Will that make you any less feminine? I am just trying to understand you logic.

I have talked to my Onco and my OBGYN and was told that the only cancer I needed to worry about when taking Tamoxifen was Uterine. Never mentioned liver or any other cancers. I have absolutely one of the best onco's around here.

Where does one do their research? I don't trust just googling. My doctor is an a cancer center of a large hospital in my area. They also have areas in the hospital that research cancer. I believe the risks of the other cancers must be very small. My uterine lining is checked every six month's.

Thanks Deirdre

I would venture that tamoxifen has a long record of recurrence prevention and that the possible se's and toxic effects are known.

And then, the amomitase inhibitors...

The onc says they might give 2-3% better protection than T re: recurrence.  But at what QOL cost???????? 

Edited to add:  No increase in survival rate.  Per conversation at MGH within the month. "That's a very good question."

"My percent of recurrence (mets) by way of oncotype is 12%. What would that be without tamoxifen? (a drug that's been around for a long time) 

"Twice that," was the answer.

Like I said, we know all our treatments cause other cancers and we can't eliminate any of them from our arsenal for that reason alone.  We do need to be rational about the info.  What is the likelihood of a secondary cancer compared to our likelihood of a recurrence from the cancer we've had?  Just knowing there's a possibility of a secondary cancer isn't enough information.  It has nothing to do with being a crusader for tamoxifen.  For some women it makes sense; for others it doesn't.  I'm grateful that its available.

Aquarious:  my intention was to support you in your concerns that Tamoxifen has a dark side and that by all means you certainly should think carefully about taking it.  Sometimes knowing all the facts can reduce the "terror" that we feel (that I certainly felt myself) going forward with this dx.  You are wise to be careful and concerned - I was responsing to your comment about "welcoming any" input.  I know the fear you are describing and I have learned, from experience, that educating ourselves helps us all make better decisions.  I honor your attempt at doing this here and being open to any input..  I hope you get some peace in your struggle,  Good luck with whatever decision you make and please let us know what you decide!  This is a difficult time for anyone at your stage of treatment..  Best, Deirdre

Member:  I appreciate Tamoxifen too, in some situation it is an excellent (though still dangerous) choice.. I was merely responding to "Terrified of Tamoxifen" and allowing her to understand that her concern is reasonable (though terror might be be a bit strong but that is where she is right now) and that a decision to go on Tamoxifen should be looked at carefully and that I truly understand her concerns.. and I don't and didn't ever suggest that it (Tamoxifen) should be left out of the "arsenl" of treatments.  Best, Deirdre