Does anyone say no to Tamoxifen

That was my understanding also. I am so discusted that they are prescribing a medication they don't even understand. My faith in the system has never been good but this really ticked me off.

It is a sad day when I can say that I have gotten better and more accurate information on this forum than I have gotten from the highly trained professionals we are supposed to be entrusting our lives to. Thank God for all of you, you are my life line.

Member: 

Sorry, I should clarify. When I said I am dumbfounded about the people living with the debilitating side effects, I am certainly not criticizing what anyone wants to do and I totally understand that the circumstances are different for everyone especially those with young children.  I am dumbfounded at what people put up with that they call "life".  I saw my sister die of lung cancer at 39 and her last year was horrendous yet she would have put up with much more.  To me, her last year was hell.  I watched my brother-in-law die of ALS.  When he finally died, he could only use his right hand yet he seemed ok with it for a couple of years.  I have no doubt that either one of them would have been happy to keep going but I couldn't believe what they went through to try and stay "alive".  My dad and I used to discuss it all the time.  Maybe dumbfounded was the wrong word to use.  I have explained to both my kids (who are out on their own) how I feel.  My daughter totally understands but my son would keep me around no matter what the quality of my life.   

I guess I do question the oncs who see some of the people suffering with debilitating side effects with a diagnosis of stage 0 or stage 1 with a grade 1 yet keep them on the drug but again some decide that's what they want too.  It's a culture of fear.  Each person needs to make her choice, but my choice is quality of life, not quantity.

 Peeps

Originally Tamoxifen was used to stimulate ovaries for women who where having problems conceiving.  It definitely doesn't shut them down. Like the others said it block certain receptors.  I, too am staying on it after my hyster/ooph.

Karen

Tamoxifen is also given to prevent a new primary.  Women who have had DCIS are often given tamoxifen and there is no risk of micromets but the idea is to prevent a recurrence of the DCIS or a new, invasive, cancer.

I plan on trying tamox. and hoping to have minimal side effects.  My tumor was VERY er + - my oncologist told me that is was as high er as could possibly be which i assume is 100%. (They use a different grading scale which gave it a score of 8 which is the highest score). 

Anyway, I guess my point it, I will happily take a 8% reduction if I have minimal side effects. My kids are 10 and 12 - I am 45.  8% makes me happy.

I know a woman that in 2006 had IDC, node neg., 1.1cm tumor,  grade 2, er/pr+ and her2-.  She chose no chemo and no tamox, but chose only alternate (mainly vita C infusions for one year and supplements).  2008 - bone mets.  Now she had just finished T/C, and had plenty of radiation to the mets - is having her ovaries out soon and will be starting femara.  Trust me, hindsight - she would have been more aggressive to not be now stage IV. Reading her intial stats - looks pretty early and positive. Damn. 

For sure, we need to support each other and there are many ways to treat each of us - AND our cases are so individual.  I support alternative help - for me in conjunction with conventional.

BUT this can happen.  Many women do fine on tamoxifen so I would hate to scare people into not trying it if it could help.  

I kind of agree with Member of the club -  cancer progression does happen even with early stage diagnosis.  If I have side effects (which sound awful and I feel terrible for those of you who have had to endure them) then I will probably look at ovaries out, an A/I or something else.  I have a few months to not worry about it as I will start tamox. in Sept.

Wishing you all a happy memorial day weekend.

I've been on the tamoxifen for 6 months now, reluctantly though, and keep planning to quit.  I thought I would quit it when the current bottle ran out, but I just got a refill.  I think I'm stalling because I want to have a definite alternative plan in place.  Right now I'm still learning from many of you guys and doing a lot of reading.  I have made exercise a frequent part of my life and am now managing to really cut way down on alcohol to just a couple of drinks per week.  I always ate healthy, lots of veggies, but still liked my sweets and snacks.  I've really cut out all processed foods and now rarely eat any junk. 

As far as the tamoxifen goes, the worst side effects have been pain in some of my joints, vag discharge, sexual issues, frequent mood swings, and the hot flashes.  The hot flashes come and go periodically, but lately they have been stronger and more frequent than ever and don't seem to be going away at all after several weeks.  This is the worst they've ever been. I hate waking up drenched in sweat! 

Even more than the current side effects, I'm more concerned about the long term effects on my   body of having estrogen blockage and messing with my hormones artificially. I've read things about increased risk of alheimer's and strokes, which do run in my family.   I know it blocks estrogen in the breasts, but does anybody know where else it blocks it? I don't like the fact that it could age me quicker externally as well as internally.  I feel that my cancer has low risk of reoccurring and that I am reducing the risk by making lifestyle changes.  And from some of what I'm reading, part of me is convinced that it's all a crap shoot.  That maybe it really doesn't matter whether you take medications or not, that either way it might or might not come back.  It may all be just a matter of luck.

Member of the club: When you stated that most people do not have side effects after one year this not based on any hard figures or facts. How disappointing that there is no real evidence to back your statement. I had asked because I hoped you had some real evidence that went against the recent large study at Toronto's Princess Margaret Cancer Hospital which found very high numbers of women who give up hormonals due to side effects. So I am back where I started in what for me is a difficult and unclear decision.

Anyway i hope everyone here has a nice Memorial Day weekend.

april----from someone who has experienced both----5 years of tamoxifen and removal of ovaries-----the tamox was a LOT easier to tolerate. My SEs from the tamox were very mild and very minor compared to the SEs I have had since my surgery 4 years ago (from the depletion of estrogen).

Anne

Hi--I'm three weeks out of my hyster/ooph and have begun to take my Tamoxifen again, so far no SE other than night sweats, which are a drag, but most women go through menopause anyway and have to deal with this stuff.  I have mixed feeling about some of the SE, we are all getting older (I hope), my friends who don't have bc are suffering from some nasty SE naturally and yes they are trying all kinds of different things for relief, some get a break and others are just suffering through it because nothing is working for them.  Maybe Tamoxifen give us some of the same symptoms as menopause, but wasn't that ahead for us anyway?  Menopause is the future for all of us, it is not natural to be on hormones (natural or chemical) after menopause. I don't mean to sound naive, but we  don't seem to want to age, as a bc survivor I hope I age and age and age.  My skin looks better than it did before my dx, people think I'm in my 30's, I just turned 49, my cholesterol has dropped 55 points since my dx, I'm losing weight, and I'm less moody on the Tamoxifen, than I was before I began to take it.  These are just my experiences.  Like Member, I don't want to frighten women away from Tamoxifen, everyone is going to have a different experience, and I hope that people will make the best decision for themselves.  I do not like taking anything as I've said before, and I cried when I took Tamoxifen for the first time, mostly because other people scared me about it.   I don't think it is ideal, but I was 100%ER/PR+, and so, for me, I think I've been aggressive, BLM, Hsyter/ooph, and taking Tamoxifen.  I've also totally changed my diet, and once I'm healed my goal is to start rowing again.  The side effects can be serious, but the really significant ones are very rare, unless of course you are that person, but remember you could also be that person who has liver failure because of Tylenol.  Tamoxifen, in my opinion isn't evil, nor is it perfect.  I do think it is important to remember that the active indgredient  comes from the bark of the Western Yew tree, Taxus brevifolia.  For women with highly ER positive cancer, where chemo therapy is less effective, Tamoxifen is often the best mainstream, course of treatment. I cannot speak to alternatives as others on the boards have much more expertise than I do, but I will say I do not view them negatively.

I thought I did everything right. I don't drink, had two kids, breast fed both of them for more than a year, took vitamins and supplements, kept my BMI good, got 8 hours of sleep, hiked, rowed, worked out in a gym, meditated, and ate very well, was a veg for more than 20 years. Here I am.

I still say who knows what the answer is, not me, that is the one thing I do know.

Enjoy the weekend.

Karen

I was first dxd with ILC in Nov 2004, went throu the guillotine of chem & radiation, then started taking tamox and had been for 4 years. It didn't work with my cancer. I was just diagnosed with mets ovaries/bone, while on tamox. I don't know what to advise except that if you can tolerate AI (I couldn't) then try one of those. They have difficult side effects, but are more effective. I wish you peace with whatever decision you make.

Best,

C

April, I think it is unusual to put a premenopausal woman into menopause to get them on an AI when they are only stage I.  The benefit of an AI over tamoxifen is minimal and there are health downsides to earlier menopause.  For women with more advanced cancer, the cost-benefit analysis may come out differently.  If it were me, I would get a second opinion.

Rose--I agree with you about the AI's, that's why I'm staying on Tamoxifen after hyster/ooph.  There are studies that show having an ooph early can lead to health concerns later in life.  For me, I'm 49 and began my periods at 11, I had enough. I was still having regular heavy periods and all tests showed I was pre-menopausal, not even peri, my periods did stop when I started taking Tamoxifen, but the week before my exhcange/hyster/ooph I went off Tamoxifen as advised, and darn if my body didn't sneak in one last period. I'm glad to have had the hyster/ooph, don't have to fret about ovarian cancer, or uterine cancer from the Tamoxifen (with that said, the chances are extremely low to get uterine cancer--but that was where I was worrying in an unhealthy way).  Everyone worries about different things and we have to do what feels right for ourselves!

Best,

Karen

Is it true that Tamoxifen only blocks estrogen from the breast cells? That is not the impression I have been given. My wife is going in for BMx - so almost all of her breast tissue will be gone - but a leading Onc from the US is recommending she take Tamoxifen because it is important to keep mets from happening. Maybe I have misunderstood!

KEW - Yes - April fool's day birthday.  I get lost in the Seattle area too.  I actually live on Bainbridge Island which is about a 30 minute ferry ride west of downtown.  We lived in Raleigh Hills in Portland. I have a master plan of moving back at some point!