Anyone out there decline taking Tamoxifen?

tmetz, I tried tamoxifen twice, once after surgery + chemo (had NED on PET scan after chemo) for 3 months, went off for horrible SEs, had recurrence 3 months later, had more surgery and tried tamoxifen again for another 4 months and had horrible SEs.  I don't trust it, don't trust the docs, don't trust any of the meds, and am not willing to do anything else at this point that will prolong a low quality of life.  I know some here would recommend doing EVERYTHING possible to extend a life (including my own mother, who is an 18-year survivor), but I now have fewer physical and mental issues related to the tamoxifen, and don't hate every waking moment as I did while I was on it.  It took over 10 weeks to feel better after discontinuing the tamoxifen, and I am still not back to anything near normal (part of that is probably still chemo SEs according to my MO - it has been 18 months since I finished chemo - still have severe fatigue and neuropathy, so it gets a little confusing as to which SEs came from which treatment).

I know there was some research some years back that seemed to indicate that those women who had more hot flashes and SEs were more likely to be getting benefit from tamoxifen, but that has been disproven in the past year or two - basically, there is no correlation between the two at all.

Response to chemo, surgery, radiation, and hormonal therapy vary considerably between individuals, depending on tumor (and now it has been shown that breast cancer is actually at least 10 different diseases, according to a study just published by some English researchers!).  It is a crap shoot.  And I no longer trust that any of these has worked for me as well as the MO and BS led me to believe, but I know that it works for some women. I am glad I at least tried it, and am comfortable with my decision to discontinue, but I was not comfortable making that decision without at least trying it.  Seems like you also gave it a good try.  If you really want to continue it, you might consider seeing an integrative oncologist (only a few of them out there - we don't have one here), and think about adding complementary care to deal with SEs as some of the others have suggested.  Best wishes, and don't beat yourself up, whichever way you choose.

Celtic Spirit - I could have written your post.  My mother died of BC in 1976 at the age of 47.  As horrible as this damn disease is and as horrible as treatment is, I can honestly say "we seriously have come a long way baby".   Our sisters before us (at least in 70s) had few choices.  I remember my mother going into surgery for a biopsy and back then if it was positive, they performed a mastectomy on the spot and you never knew till you woke up.  My mom was sicker than a dog ALL the time from chemo and no receptor testing, no hormonal drugs, etc. 

A year ago I got same dx, had surgery and chemo and the drugs given for nausea allowed me to go on with my life relatively normally.  Then I had rads which sucked but again meds got me thru that.  Now, I am on Arimidex and I have joint and bone pain but I have always chosen to believe as you - the SEs mean its working and I too thank God every day I swallow that tiny white pill.  I think each of us has to make the best decisions for us so why I never ask what someone else may or may not do since each of our dx, our treatments, our grade of tumor, etc is different.  My tumor was tiny and very aggressive so I am thankful for anything that may fight back a recurrence. 

To Celtic Spirit & financegirl:  Your last posts made me remember my mother and my grandmother, who both died from BC.  You are so right about how lucky we are that treatments have progressed such a long way from when they were diagnosed and treated.  Love your fighting spirits! xoxox

Hello all.  I am fortunate to have little in the way of SE's from the tammy. I do have some bone and joint achiness but I would gladly tolerate it to keep the bc at bay for as long as possible.  I had a obgyn appt last Friday to discuss ovary removal and he mentioned that Evista is supposed to be a better drug then tamoxifen. I have not done any research on it nor have i asked my onc yet but I plan on it.  I figure after ovaries come out in December that I will be on another drug.  I have heard that the drug that you take when your post menopausal is even worse than the tammy. I can't think of the name of it right now but we shall see.  I applaud you on your choice and I would look into something holistic to help keep the bc at bay!! There are holistic threads on this site, check them out. ((HUGS))

I too declined Tamoxifen.  My MO went through all the positives and negatives and for me the negatives clearly outweighed the positives.  My onco score was 8 so my risk is very low.  I absolutely lost faith in my BS after she failed to be honest with me about my lymph node removal and she strongly got in my face about the Tamoxifen which further made me not do it.  Haven't been back to see her and will just see my MO from here on out.  I did order DIM today and will start taking that.  I am in good health, haven't gotten back to exercising enought, but stay within decent weight ranges.  So I will choose a healthy lifestyle and no SE.  I'm giving my poor body a rest from a traumatic year.

Also, your Oncotype score assumes you will be taking Tamoxifin.

I just started taking Tamoxifen in July.  I had some minor bone/joint pain in my feet for about the first month but then that disappeared.  So, im only left with hot flashes.  Bad ones!  So, I was hoping they would disappear too but I couldnt take it any longer.  So, I started taking Effexor.  Works like a charm!  No more hot flashes.  So, im 3 months in and I have no SE's.  But, even if I did there is no way I would stop taking it.  It cuts my recurrence risk by 50%.  In my case, its a no brainer.