Does anyone say no to Tamoxifen

skippyrcis

I have been prescribed Tamoxifen by my oncologist.  I am not sure I want to take it.  I am told that not everyone has uncomfortable SEs.  My oncocyte score is a 13.  I have had BM and currently have the TEs.  Luckily I don't have to do chemo or rads.  I just wonder if it is worth the 4% decrease in reoccurance.  I probably sound idiotic for even thinking about not trying it.  Maybe I will wait until Wednesday.  I have my GYN appointment that day.

pameliza

I also am undecided about taking Tamoxifen.  I have tried it twice and both times I get so depressed, have night sweats and can't sleep and become very irritable.  I felt the same way as you about the small percentage it offers.  You find yourself asking " how much is quality of life worth"? 

Try to do as much research on your own as you can. The wonderful ladies on this board will help you too.

Maybe you should try it and see how it goes.  You might do just fine. There are things that can be given to help some of the side effects if you do have problems. I know our oncologists would much prefer we take it due to being estrogen positive.  I hope you can get some answers and peace of mind.  Take care!

Pam

barbe1958

I was 50 at diagnois and didn't want to take Tamoxifen either. So far I've gotten my way! One of the reasons I went right to mx is to avoid chemo, rads and drugs...

Crystalady

I was first diagnosed with BC 10 yrs ago. I took Tamoxiifen for 4.5 yrs. I know of several people who either chose not to go on it or who stopped very shortly after starting because of the Side Effects. They are no longer with us. One thing that I am sure of, is that you can never be sure you won't get it again. I did, 2mths after my specialist gave me the 10yr all clear.

Since I've found out I have mets to the spine, I've also realised that I have been extremely forunate to have gone this long without recurrence. I intend to stay on whatever drugs will help me to survive.

How will you feel if you did get it again without even trying the Tamoxifen. Obviously this decision is totally yours. I probably had SE's for about 18mths before it settled down, but they weren't that bad that I couldn't tolerate them, but then again I desperately wanted to survive for my children.

Good luck, I hope you make the right decision for you.

tami48

I'm on Tamoxifen and my Oncotype score is 13...I also struggled with the decision of whether I should take it or not.  I don't have many se's, so as long as I'm doing okay on it I'll probably continue. 

I tried Arimidex before Tamoxifen and had horrible se's.

Good luck!

Katalin

You don't have to decide immediately, but one thing is true:  not everyone reacts the same way to tamoxifen. I found it was okay-ish, and it gave me a lot of piece of mind.  I hate drugs, but this one does have a really strong track record with strong stats.  It will help deal with any stray cells that may have escaped the original tumour.  My thinking was:  gosh, there was a biopsy where cells could have easily escaped into my body, let alone the mastectomy!  It was a little reassuring to have it under my belt, so to speak.  Good luck with whatever you decide!

barbe1958

I can't afford side effects that keep me from being able to work. My husband has 3 brain tumours and I have a mortgage and tons of bills to pay. Are the SEs bad enough to keep you from work?

Abbey11

I started taking tamoxifen an January and have virtually no side effects.  My periods have been irregular and lighter, and I often wake up in the middle of the night feeling too warm.  But, that's it!  I was worried that the tamoxifen wasn't working well, but my onc isn't worried; he says that approximately 30% of women have little to no side effects from tamoxifen.  I think that we often hear the worst stories because women who have terrible side effects reach out for help and suggestions.  But, we don't hear from women who are trouble free.

I'd be really careful not to eliminate a drug which has worked so successfully and so well for so many years.  Also, remember the research for the oncotype testing was based on node negative women who took tamoxifen.  The test assumes you will take tamoxifen and scores you accordingly.  

Good luck with your decision!

barbe1958

I've had a hysterectomy and hoped that was enough loss of estrogen. Can they check my levels to see how much I'm producing and what is the minimums?

Bigapple09

I am BRCA I and had an ER + bc in 2002.in my mid thirtes

I was always very anti tam, anti radiation etc

I did not want to take Tam, but every woman in my family had a second or third bc within 2 years of the first diagnosis.

My Dr(s) had recomended bi lat mast and ovaries out in 02 because of the BRCAI. We found a temporary middle ground as none of those choices worked for me in my mid thirties.

Once I finished treatment, I took the tam, at first there were hot flashes and night sweats but it went away.

I finished the 5 years in may 08, and had no reoccurances.

I am still the only one who took Tam post diagnosis who did not have a second BC (in my familiy)

 I had a false positive MRI in January (first false positive in 6 years) and given my genes did a bilat mast with reconstruction, and will likley remove my ovaries later this year because the risk is too high given my gene problem.

 I feel like the tam, while not perfect gave me 5 intervening years to make big choices and since things have changed so much in those 5 years I have so many better surgical options. Whereas the women in my family who did not do the tam wound up with traditional mast, and chemo, they had no options at that point and the only difference was the Tam.

Your Dr can rx xanax or a mild drug if the tam interferes with sleep. i worked the whole time and have a very high profile high pressure job, Knowing how hard chemo is and really, really wanting to live to be an older person helped me say yes to Tam and bought me the time to pick a long term solution

revkat

Please don't base your thinking about not taking tamoxifen on your low oncotype score. Those scores assume you will take tamox for 5 years. They do not predict your chance of recurrance without tamoxifen. The tamox may very well be the most important part of your treatment (after surgery, of course).

Anonymous

I took tamox for 5 years and am doing very well--have high risk from LCIS and family history. Most women tolerated it very well with the most common SE being hot flashes. I think it's definitely worth trying----you can always stop if you can't tolerate it.

 anne

roseg

One thing to remember about tamoxifen is that it is not an all or nothing commitment.

Try it! Not everyone has bad SE and for many they fade within six to eight months.

Commit to six months because it can take that long to adjust. If you still hate it then quit. If you have a recurrence you'll know that you did all you could, or at least tried to! 

bettysgirl

i just tarted it a month ago and i  find i am having trouble with the irritability. the mood swings are BAD and i just stay PO'd alot. I find if i skip a day it eases a tad but i am not sure i want to stay this way long term. My onco is of the school that the women that are having more SE's are the ones that benefit the most...i think that's a load of you know what!

Deb_62

I've been taking Tamoxifen since 8/08 & the only side effect I have is lighter periods & have even skipped a couple. 

skippyrcis

Ok.  I am confused here.  Some say that the oncocyte score tells you what your recurrence rate would be if you took tamoxifen.  My oncologist told me that my score is a 13 and that meant that I had a 8-10% chance of getting cancer again.  He told me also that if I took the tamoxifen my recurrence rate would drop to 4-5%.  How can both be true? 

I am pretty worried about the moody SE.  I take medications for this already.  They work pretty good most of the time.  I really don't want to be that person again that I was before meds.  I was miserable and so was everyone around me.  I had less patience and now I have two small children to raise.  I have the potential to be a total btch.  I will try the stuff, but I can not imagine being miserable for a few days, weeks, or even six months.  I am maxed out on my meds and I would hate to start over with something new.  Has anyone else been in this situation? 

ICanDoThis

You may want to look for some posts by Marie Kelly. She's another of us Grade 1/Stage 1 ers, who just had a lumpectomy, and opted out of rads and hormonals.  She just passed her 5 year cancerversary.

My onc has indicated that, if I want to, I could stop taking tamox. My tumor had VERY good margins, there was no additional DCIS except that right by the tumor, and I had rads.

I chose to stay on tamox because I needed something for my bones, and tamoxifen helps post-menopausal bones avoid osteoporosis. It was this or staying on fosamax [edited], and that makes me sick.

 Sue

barbe1958

Skippy, pretty sure your onc is wrong. Like everyone's saying, onco type score is based on taking Tamoxifen.

I had a hysterectomy 5 years ago and don't know if I'm post-menopausal or not. With all my meds it's hard to tell what is me and what is chemical! LOL. I do agree that I can't and don't want moody side effects. I hated myself with all that anger... 

navygirl

Skippy...I'm clarifying what Barbe was saying, the Ocono score gives you both. The "before score" which is all your genetic factors/tumor factors calculated up to give you a score indicating the likleyhood (I know, spelling) of distant reoccurrance in 10 years. Then, you are given your chances based on your treatment plan...which for ER/PR+ tumors includes 5 years of tamoxifen. You may only get a 4% decrease in chances by taking it - which depending on the se's for you - may not be worth it...esepcially if your score was already low.
I elected to have ovaries out after reading about the effects of tamoxifen on the liver, the se's -which I always fall on the hard side of with any medication- and hearing the effects of it on your mood. I HATED what the steriods did to me...I was a raving madwoman on a moments notice...and I just have no desire to live that way for 5 years...or more depending on how long it stays with you. Come what may, I made the best choice for me and I'll have no regrets one way or the other because I prefer to live with my sanity...and I didn't see that happening with Tamoxifen in my system.

Best wishes...there is the possibility that you could try it and if you have a hard time, stop it...and have your ovaries out instead.

sarabhealed

My oncotype score was 14 and with tamoxifan reoccurrance rate was about 9% without it between 3-4 percent higher. I decided it wasn't for me--(I know too many women with hysterectomies in the first year and I wanted no part of the other side effects as well). My oncologist preferred I be on it, but was satisfied with me going on natural progesterone to balance the estrogen. I also am eating well and exercising more...I know these decisions are hard--best wishes in your decision making process...

LouiseIndigo

Skippy, i was so upset by the idea of the tamoxifen that was prescribed for me that i refused to consider any hormonal treatment all. This was after mast, chemo and rads for albeit grade 3 disease. Six months after finishing rads the cancer popped up in my bones and i am now on an AI/other forever, or as long as they contain the disease, which i have to say they have yet to do. My chances of recurrence were pretty high for starters but who knows where i might be now if i hadn't been so scared of hormonal treatment on day 1.

I know everyone is different and it is so much more tempting not to take the hormonals route with lower grade disease. But there's just no knowing how the chips will fall. I know people with grade 3 disease who are living for years without progression and others with grade 1 who haven't been so lucky, and of course vice versa.

Good luck with your decision. It really is not an easy one.

Louise

skippyrcis

Hey Ladies, I took my first pill last night.  I read again my oncocyte test and see that the recurrence rate includes the tamoxaphen.  I still don't understand why my oncologist said that it would reduce me by 4-5 %.  I will call sometime and ask.  For now I will take the medicine.  I appreciate your help with this decision.  I don't want to have to deal with it again and I feel terrible for those of you that have to face it again.  Louise, I hope they are able to take control and that you do well.  

Thank you! 

barbe1958

Good for you Skippy, I was one of the ones who pointed out the stat was only IF you took Tamoxifen! You are doing the right thing...

unlimited

I have been on Tamoxifen since August 2007.... and have virtually no SE's.  The only thing I noticed was an easy 6 pound weight gain in the first month  YIKES.  Although now that 6 pounds is gone.  I have yet had a period since all this BC tx started, thought I would get the period back after chemo -- but seems the tamoxifen is keeping it away forever for me.

I can't say I get hot flashes.. actually not even sure I know what a hot flash feels like  lol ,,, sure I get warm once awhile but nothing that is troublesome..... no night sweats whatsoever....

Hard to believe I have been taking tamoxifen white pill for 20 months  

mevanatta

I decided as well to take the tamoxifen.  The first night slept like a baby and woke up wet!  

2nd night - no SE's except this Am I was a little nauseated and had cold flushes once in the AM.

Anti-nausea liquid and some yngurt took care of the nausea.. over on the Bottle of Tamoxifen thread there is a good discussion about what to do for some of the SE's. 

I kinda get that the SE's out weigh the risk of reoccurance..... and after the first fews weeks it can get better.  Most that I heard that excercise and eat right do really good as well.

Best of luck Skippy.... come over to Bottle of Tamoxifen thread ....

navygirl

Skippy....best wishes for you! I'll pray for no SE's for you...I'm glad you made a decision you are comfortable with. That's what it's all about...

moonchild64

I had significant mood swings with Tamoxifen when I started in January '09.  I felt very angry and bitchy. I wasn't sure I wanted to continue taking it, but my onc said Tamoxifen was just as important as chemo for the ER+ type tumors.   I asked about splitting the pills to reduce SEs and she said it probably wasn't going to make a difference.

I decided to try anyhow.  I now cut the little white pill in half and take half AM, half PM.  I have noticed a significant difference in how I feel. Perhaps it is all in my mind, but all I know is I feel so much better. 

marlenet

Hi~I started Monday.  So far, so good.   I was a bit concerned about the blood clot issue but i have read less then 1% develops blood clots.  I have had no history of blood clots. I decided to take the pill to reduce this monster from returning.  My doc said blood clots are rare.  I have read from other sites here some experience leg cramps/pain.  but for the most part it is doable.

Anonymous

My onc told me that my bilateral mastectomy put me at a 90-95% survival rate and Tamoxifen would only increase my survivability by 1-3%.  Not only are some of the temporary SE's nasty in some women, but the serious long term health risks are significant (namely other types of cancers which are way harder to detect than bc).  I decided to avoid Tamoxifen and to just change to a cancer fighting diet and exercise program to decrease recurrence odds (which I have), but am still wondering a bit about my decision.  My naturopath and some of the books and articles I've read really say Tamoxifen is not as low risk as many Western doctors would have you believe.  My ILC tumor was tiny - less than 6 mm with no lymph node involvement, but extensive LCIS.  I'm only 44, but have a 4 year old daughter who needs a mama around a lot longer... Any suggestions?

Bigapple09

If I had the bilat mast, after my first cancer, I would not have done the tam, I only used it to buy time since I am a BRCA I and was not ready for the mast back in 2002. I agree that post mast, the increased health risks are not warrented. 

Post mast, I still get monitered at memorial, because they want someone looking at me as I kept my skin and nipples. i was told even with the BRCA my risk of a new BC is only 1-2%

i have other risks to manage, but none that would involve more tam. i would consult with another oncologist who specializes in women who developed pre-men BC, the veiws on tam for pre men are very different than on post men.

lisasayers

lafinlady I made the same decision as you for very similar reasons.