Tamoxifen: to take or not to take?

I am so glad to see you took my post in the way I hoped....I am a bit of a frank, up front, heart on sleeve kind of girl and after I pushed send I thought...have I gone too far? Whilst I totally respect everybody's right to make their own treatment choices, I guess I also respect my right to jump up and down on other women's behalves and say 'do it, try it, grab every opportunity medicine throws your way to get well and stay well (weller)." I often wonder when I read of the complaints about these medications that at the end of the day it's more a case of "welcome to menopause" -- we just get welcomed into that club a little earlier than we'd like. And we can't take HRT (but given the risks who would want to). So would these women with the bad side effects be any different if they were just experiencing normal menopause? Perhaps not. I have friends who have suffered hot flushes for years and years and they're nowhere near a tamoxifen or femara pill. My mother sufferes from excruiating arthritic pain and has done for decades. No cancer, no femara, just her lot in life. Lots of people live with pain, with aches, with niggles. Is it so bad to put up with that we'd risk getting a mets diagnosis if there is a chance we might keep that monster at bay? No brainer at this end of the keyboard. The idea ot taking drug holidays terrifies me. And I have to admit...I get all judgemental when I read of people who do...sorry but I will be honest and I do... I freak out if it's 8.05am and I haven't taken it yet, cause I usually take it at 8am. Truly obsessive but working for me as a concept ;-). I'm sorry for you, as I am for me and the whole rest of everyone on this site that  have to look forward to a daily pill (one bad side effect is that it reminds you every single day what you have had whether you want to think about it or not!) and if you decide to go forth and take it, I sincerely hope it is as kind to you as it has been to me (and I'm on the harder stuff).

All I can say is when the recurrence freak outs happen (not a day goes by this does not enter my head), I calm myself by remembering, I did the mastectomy (the idea of dicking around with a lumpectomy/clear margins/radiation just was not for me and I truly did not care and still don't about having lost a boob, apart from the pain it is to find clothes), I did the chemo four time times in three months to mop up anything that was out there, I take a pill to striip me of ostregen every day, I eat well, I've given up alcohol, I still have to lose more weight and exercise more, but beyond this there is nothing more I can do. Nothing. So it calms me to know I've done all I can. And hope for all of us long and happy and well lives.

You'll see me on the recon page in the not too distant future Lou...but for now it's prepping for yet another mammogram for my first year check up. And I'm also organising to have an MRI. Don't trust them mammograms which can miss things (even though I've had four in the last 9 months...I have to hope the odds are in my favour on this front! Surely they can't miss something four times in 9 months?!)

Hope the strapping removal procedure goes well and all is good.

Squiriming a tad as I think about what you've gone through. Like I said before ... you been much braver than me so far!

xox

Thanks Viv, I am reading that the timing of taking the tablet is the trick. I have not had a period since the manic period I had on AC, then nothing. So thats probably a year now. My bloods say menapause.

Why are you changing to armidex?

L:)

I am sitting here in the doctors waiting room to have my strapping removed after my revision surgery last Friday. Yours and Merylees responses have moved me to tears. I cant thank you ladies on this site enough for the honesty that your write.

I agree that I may have been reading a lopsided report of tamoxifen side effects and that many women are probably happily going about their lives taking it. And I am conscious that I should feel fortunate that I have the option to take something that might decrease a chance of recurrance. I guess I am a little canky though, mad at cancer that it will continue to impact on me and also cranky that there is contradiction in the medical approach to my case.

I think I need a jolt, and I think this is it. I really think i need to take it but just am struggling to face it because of what it represents.

So Dawngirl, thank you for your emotive response to me, I appreciate your frankness.

XXXLouise

Thank you for your honest response. I guess your story is the one I needed to hear. You make alot of sense. I am sorry that this is how your experience went XXXLouie

My bc was 90% hormone positive, her2 neg, last week I had ovaries/tubes removed along with hysterectomy (uterus & cervix removed as an extra preventative) now waiting for surgical menopause to kick in ??

Started Tamoxifen early June, I take it with evening meal.  No real problems, still had regular periods for first 3 months, then nothing.  Couple of hickups with joints, neurofen fixed overnight. Feet tingle and are a bit numb, no rear drama.  Oncologist will change me over to  Arimidex in November which has a lot more side effects.  But I think  the whole thought of recurrance terrifies me more than side effects of these drugs.  What ever they are getting the best results from I will take or do. 

Best wishes on the choice you make.

Viv

i had the option to take tamoxifen in 2011. decided against it as i didnt like the sound of side effects. and my speciailist said the same as you. not worth the risk in some cases. i now look at all the stats and all the pathology reports and think why did they say that. ???? 

i got a reoccurance within a yr - not saying u will ofcourse. 

i regret being scared of the risks and side effects from taking tamoxifen wish i had given it a try. im on it now (after my reoccurance in 2012) hardly any side effects. 

you do hear alot of horror stories. but i say give it a go - if u have issues then rethink it. whats the worst that can happen?:???

Merylee Punchard 

Yes she is suggesting 5 yrs for the tamoxifen and up to 10 depending on my menapause position (i think) when i start. If menapause continues (my bloods indicate menopause now) she might recomend a change to an aromotose inhibitor. More worse side effects.

One of those things i want to avoid is the knock on effect of taking it, like you say you take Endep to deal with the side effect of tamoxifen.

I am with you re taking control for yourself and stopping now and then. We really are prisoners of this disease.

My onc doesnt really do statistics, she says that the questions i ask, like what are the stats of not taking it if the count is very low, dont exeist because they dont study things like that because they couldnt do a study where they ask people not to take something the standard of care requires them to take.

Long winded I know, but its actually really helping me thinking this through.

XXX Louise