Does anyone say no to Tamoxifen

Jaybird627

Just FYI - taxing Tamoxifen does NOT guarantee that you won't ever get BC, have a recurrence of BC nor get mets. No guarantee. This is a fact.

KEW

I think I covered the chemo thing with Vivre in a following post.

Karen

Merilee

I have noticed a significant improvement in my vision since I went off the tamoxifen.

YearoftheHat

I am post mast and I just finished chemo.  I start tamoxifen next Friday.  I have been torturing myself about this.  I want to feel good and not gain another ounce.  It sounds like for many of you the SEs taper off after about a year.  I might be able to handle that.  I think chemo probaby put me through menopause.  I hope not actually, but I might as well just be ready to accept that.

poolgirl

Thanks guys for all of your help in making this difficult decision.  I will stick with the oncologist that supports my decision. I feel alot better now that I am off of the meds. Time to heal... I will not live in fear of cancer returning. I will do my best to make each day a happy day.

brenda63

I have been taken tamx since April and I haven't had any se at all. I was just as concern as everyone else has been about this drug but I knew that I needed to put my health totally in God's hands. I don't know what the future will bring, but I know God will be there to help me get thourgh it. You all are in my prayers.... God Bless

elimar86861

Hi,

I've read a lot of the posts on this thread and here is what I am wondering...In the group of women who had lumpectomy, and then either refused or tried but quit the Tamox., did you have the follow-up radiation beforehand or not?  (I'm post surgery, and pre-everything else, so looking to make a good decision.  Interested in having those whose diagnoses are similar to mine share about having the radiation or not before making the Tamoxifen decision.)

elimar86861

p.s.  I also wanted to know if most of you get the Oncotype Dx, and have low scores & know you have low chance of recurrence before deciding against the Tamoxifen?

terrij152

My Oncotype score was 13 and my chance of recurrence in the next 10 years was 8%, but keep in mind that the Oncotype recurrence rate is with being treated for 5 years with tamoxifen!  I started the tamoxifen on 7/22/09 and so far no SE's that I'm aware of.  I look at it that any way I can prevent this from recurring is good for me, so if I get some hot flashes or night sweats big deal.  It's not an easy decision but in the end trust your instincts. 

MarieKelly

elimar,

I think I  posted on this thread some pages back but am posting again just to answer your questions . I refused tamoxifen after lumpectomy for a small, low grade IDC mixed with DCIS.  My stats were the same as yours as stated in your bio line EXCEPT that mine was grade 1...which may or may not be a major exception depending on whether you have a grade 2 tumor with a genomic grade that acts more like a low grade than a high grade. 

No, I didn't have radiation...I refused that too.  I had very, very wide, clear margins and also had the biopsy track removed during the lumpectomy. Just my personal opinion, but I would never allow myself to be radiated for anything other than palliative treatment. When the probabilty of surgical cure is as high as it was for me, the potential short and long term risks of radiation far outweigh any potential benefit.

No, I didn't have the Oncotype testing done. I was diagnosed in 2/2004 a week after my 49th B-day and I don't think it was even being offered yet at that time, though I'm not really sure. Besides, the main purpose for oncotyping is to help the oncologist clarify who might or might not benefit from chemotherapy for those who are on tamoxifen.  Even if it had been available back then, it wouldn't have been indicated in my situation since I wasn't going to be taking tamoxifen and chemo wasn't being considered by the oncologist because of the size and grade.  Grade 1 tumors don't respond well to chemotherapy because they're slow growing - chemotherapy only targets rapidly dividing cells.

Back when I was making my treatment decisons in 2004, I already knew just from all the prognostic indicators/factors regarding my tumor, that my risk of recurrence is low without even knowing what my oncotype score is.  Small tumor, grade 1 with tubular features, wide clear margins, biopsy track removal, already in natural menopause at age 48, no neurovascular invasion, negative SNB, no necrosis, Ki-67 of only 5%, no calcifications on mammogram with extremely non-dense breasts, no fibrocystic brease disease and no family history are combined indications that my risk of recurrence is very low and that the probability of surgical cure was very high with wide margins.

For someone like you with a tumor grade of 2, oncotyping is probably a good idea, even if chemo isn't being considered, if for no other reason than to get some indication of the actual true aggressiveness of that tumor.  There's research out there that feels all almost all grade 2 tumors can be reclassified genetically as either grade 1 or grade 3 and that grade 2 probably doesn't really exist.  If you come back with a very low oncotype score, you'll know that it's quite likely you had a tumor that acts more like a sluggish little low grade and that your risk of recurrence is low enough to allow confidence in refusing certain kinds of therapy.  Not knowing what type of grade 2 you have makes it more difficult for someone who might be inclined to make treatment decisions other that what's standardly offered...and frankly, not knowing is part of makes oncolgists stick rather stringently to standards of care.

elimar86861

Great information Marie!  My radiation sim is scheduled for Aug. 13.  I'm kind of on the fence about treatments and I hope to get more clarity by then.  One part will be when I do get the Oncotype score.  Although I have been told that I am an obvious candidate for hormone therapy, and not likely to need chemo, I feel the need to rule out that I am not one of the surprising few who has low stage, low grade with a high Onco DX score and better to find out sooner than later.

So,  have some others done the radiation, then skipped the Tamoxifen?  Vice versa, have some skipped radiation & done only Tamoxifen?  DO TELL.

Dawnbelle

Marie is so right.

I had a grade 2, 1.7cm tumor, sort of young at 43, & VERY pre-menopause. That screams chemo.

My oncoDx came back 6.

My oncologist is suggesting Tamoxifen for 5 years.

Or ooph & Tamx or an AI.

Chemo was not suggested at all.

How do we know if the choices we are making are right?

Menopause is a better choice than BC. Side effects of Tamoxifen are a better choice than BC. How do I find a naturopathic doctor??

I have read different stories as to what kind of drug Tamoxifen started out as, for fertility, for bones, does anyone really know?

joycey57

THE DR WANTED ME TO DO CHEMO AND RAD AND TAM.BUT I DECIDED I WILL DO RAD.ONLY.I AM POST MENOPAUSE I STARTED MENO 15 YEARS AGO HOW MUCH ESG CAN I HAVE?BESIDES I TOOK PREMPRO FOR 15 YEARS I THINK THATS HOW THIS ALL CAME ABOUT ANYWAY.MY SCORE ON THE ONCO TEST WAS 21 MUSHY AREA DR. DONT EVEN KNOW IF WILL BENEFIT ME,BUT ON THE OTHER HAND I THINK AM I CRAZY?SOMETIMES ILL GET A PAIN IN MY KNEE AND I THINK OH NO.DOES ANYONE HAVE THOSE MOMENTS.SOME MINS IM STRONG OTHER MINS IM NUTS.BY THE WAY I STILL GET TERRIBLE HOT FLASHES. I ALWAYS EXCERCISED AND ATE PRETTY GOOD.ANYBODY HAVE ANY THOUGHTS ON ALL THIS?

Susers

Merilee - My vision improved within a week of going off Tamoxifen significantly!!!

Britt

Hi all -

I started Tamox on 7/1 and developed the most horrific side effects after a week and a half - joint pain everywhere, moodiness, depression, afraid of leaving the house, lost my sense of humor, thoughts of suicide, loss of hope, along with the usual hot flashes.  I saw my med onco last Tuesday and she told me to stop taking it for a week to see if the side effects would go away.  And, after not taking it since last Tuesday, I already feel a lot better!  What she wants to do is then start me on 10 mg in the morning and 10 mg at night - I had been taking 20mg at once daily.

My Oncotype score was 12 with an 8% chance of recurrence if I take Tamox for five years.  I opted not to have chemo, but I did do the usual radiation course, which ended on 5/27.

All I can say is is that the Tamox was totally having an effect on my emotions and personality besides the physical side effects.  I really do not want to continue taking this drug.  I only had a 0.2cm invasion of the sentinel node - a micromet - all other nodes were clean when I opted for the ALND.

 I REALLY do not want to take this drug again.  Adjuvant does not have enough variables to give an accurate recurrence rate.  This is a dangerous drug that can and has caused blood clots, uterine cancer, and endometrial cancer.

For this last month, I have turned from a positive, upbeat person into someone curled up in bed in the fetal position, crying, with no energy whatsoever.  And I REFUSE to take an antidepressent to counteract the effects of the Tamox.  The Tamox caused the depression.  No Tamox, no depression.  And WHY take another drug to counteract the side effects of another and then have to deal with the side effect of that drug?

Susers, I see your stats are similar to mine, although you had lobular.  How are you doing now that you have been off Tamox?  How long have you been off of it, and are you taking any natural supplements in lieu of Tamox?

I just think Quality of Life trumps being a miserable bitch for five years!

Would really appreciate any and all input.   

HelenaJ

Britt (((hugs))) - I had isolated tumour cells in two nodes but considered node negative.  Onco 6 - no chemo.  Started tamoxifen in Feb 09 and within a few weeks had horrible anxiety, then depression and couldn't get out of bed.  Went off tam straight away and then when feeling better saw my Onc.  He suggested trying again and I suggested splitting the dose.  I had 2 weeks off and started taking it again during a "good" period of my cycle.  B4 I started taking it right when my period was due thinking it would stop it (noooooo).  Anyway coming up to 9 weeks down the track 2nd time around and I feel great.  Bit of anxiety but I had that with premenstrual tension anyway.  I have no major side fx at all other than dry eyes.  There is another lady on the Bottle O Tamoxifen thread who also splits the dosage like me and doing well.

I am totally surprised at how better I feel so thought I would post just to let you hear my story.  Can you try again and see if it works better? 

big hugs

Helena

rubyredslippers

I was 38 when diagnosed with a Grade 3 tumour in my right breast, 1.7mm. It was hormone positive. As most of you have no doubt experienced, my oncologist at the time (at the time; I would not go back to) told me "I had to" go on Tamoxifen for the next 5 years, for the 4% benefit - of course no attempt was made to give me all the facts on Tamoxifen and I was just told to do it. I then experienced being given the gloom and doom stories when I refused...like scare tactics in order to be forced to comply. That really messed with my head - I was very positive and strong until the oncolgist played this game with me over my refusal to do what they said. I have stuck with my decision; I had chemo and lost my hair and gained a lot of weight. I had radiotherapy daily for 6 weeks, and had to travel a 4 hour round trip for that. I think I have paid a high enough price and had a whole year dedicated to suffering physically thanks to BC. I am not prepared to spend the next 5 years of my life in hell for a 4% no guarantee 'benefit'. The way I look at it, even if I dont have any SE's, what if the Tamoxifen is silently giving me cancer of the uterus, or ruining my liver...

Tamoxifen, no thank you. I think to do that to women for a no guarantee 4% benefit is highly questionable. I find it appalling that oncologists tell you what to do, make no or limited attempts to make sure that you know everything you need to know about this drug and then try to make you feel like youre going to die if you dont do as youre told.

Luna5

Britt,  I have never been on an anti-depressant..so I was surprised when my onc made it very clear that when on Tamox one should not take any anti-depressants.  It must be very important for my onco to so strongly caution me when she knows I'm not on other meds.  Clearly, she was worried I might add them at some time without her knowledge.  So, you may want to check further before you would consider them.  I know you said you wouldn't want to anyway...but just letting you know what my onc said out of the blue.  She didn't warn me about anything else.

 Question for all of you about Tamoxifen.  I am post menopausal by at least 10 years.  Just had all my girl parts out, DBL Mast, total hyst, ovaries, tubes, etc.  OncoType Score 0% chance of local recurrance and 3% chance of distance recurrance.  Onco was so surprised at the score that she called out there and quizzed them about the tests and retests and all.  I am so impressed that she did that!  It made me trust her much more.  Anyway, Onco says since OncoType Score is based on Tamox for 5 yrs and since I have no uterus...I should go on Tamoxifen.  I have so things coming up in the next two weeks, so I will wait at least that long to start taking it.   I have not researched all the pitfalls of Tamox because I was sure I would be put on an AI and spent all my time researching Aromatase Inhibitors.  What do you think?  How much risk is there of blood clots?  My daughter almost died from pulmonary embolisms from birth control pills in less than a year of taking them.  I don't know if I am prone to blood clots.  I do know that 35 years ago I found that I could not take birth control pills because each type made me a different kind of emotional nutball.  One kind made me cry all the time.  One kind gave me enormous strength and anger over nothing.  I broke and tore up some things.  One kind made me argue about things I don't even care about.  Anyway, I didn't feel completely me until a year and a half after I quit birth control.  So, dealing with estrogen...Question for all you knowledgable people who have already researched Tamox and/or had personal experience with it...what should I do?

 Thank you for any advice you can offer.  I know many on these threads have way worse probs than this, but so many of you have such good insight and advice I just wanted to listen to what you have to say.  I have already learned so much in the short time I have been reading your posts.  Thank you.

Renata

I also was told to take Tamoxifen and so I did for 9 months since my tumor was 100% ER/PR+. Then in April this year when I went to the Gyn I was told I had a very big ovarian cyst I didn't have before, this was just before my delayed reconstructive surgery. He suggested I could have the ovary out in the same surgery as the expander inserted. I couldn't believe it. I refused and asked if the cyst could be related to the use of Tamoxifen, probably not...that would be unusual...was the answer. As soon as I got home I googled "Tamoxifen and ovarian cysts" and found out the link between them is more than established in premenopausal women, I was 38 at diagnosis, of course I'm premenopausal. I had blood work to check the CA125 level and a pelvic ultrasound and MRI which revealed two large ovarian cysts, probably cystadenomas according to the report. I went ahead with the reconstructive surgery and quit Tamoxifen as I read Tamoxifen related cysts usually resolve themselves when the treatment is discontinued.  I'll have another ultrasound in September to check the cysts with a different Gyn.

I don't trust my doctors anymore. I feel I was pushed to have a mastectomy instead of having neoadjuvant chemotherapy and then attempt a lumpectomy that was what I wanted. I had chemotherapy anyway after the mastectomy because it was advised, four A/C treatments, only to find out afterwards that chemo doesn't work so well on ER/PR+, grade 1 tumors...

I won't follow anymore any doctor's advice before doing my own research.

Britt

Thanks for responses and sharing of Tamox experiences.  It is so important to do one's own research.  I do not believe I will ever resume taking Tamoxifen again.  So many risks for doubtful benefits . . . reading "The Dark Side of Tamoxifen" is truly an eye-opener.

Member_of_the_Club

Britt, where did you come up with the idea that the benefits of tamoxifen are doubtful?  This has been studied forever and the benefits are substantial.  The benefits of tamoxifen may even be greater for some of us than chemo.  And the risks are rare.

rgiuff

Renata, sorry to hear about your experience.  If I were in your situation, I would do the exact same thing.  I have done 7 months of tamoxifen, although I'm currently taking a break from it for a few weeks, will possibly start up taking it again soon.  I'm due for the TV ultrasound next month.  Any sign of ovarian or uterine problems, and that will be the end of tamoxifen for me also.  With my small low grade tumor, I don't want the risk of having to have my uterus or ovaries removed.   And I'm perimenopausal, never know when or if my next period is coming, but I've read so much about the after effects of these surgeries, and that the ovaries do benefit us even after menopause, that I would do everything I can to avoid having to undergo either one.

Shadow07

I tried it for 6 months. Weight gain, headaches, joint pain, vision problems, dimpling of the skin. Hated it and refuse to take it. I will take my chances. The hot flashes were so horrific, I could barely teach. I would run to the window and stick my head out to get air, the kids looked at me like I was crazy.

Renata

Rose, I hope your TV ultrasound goes well and that everything looks as it should. I was stunned when told about the cysts being so big because I never felt a thing. Surgical menopause and natural menopause are very different and the younger you're thrown into menopause the worse side effects are. I'm 39, that's at least 10 years before natural menopause onset. It really shocks me how insensitive doctors can be. I hate even being close to them...

Shadow, I hope you have cooled down and feel much better

Best wishes to all.

Britt

Shadow, I agree with you.  We are all having different reactions to this drug.  I too no longer wish to take it.  However, by no means am I indicating this is the right decision for all.  Everyone has a different experience with this drug, and each of us must make the right decision for ourselves.

Shadow07

I agree with you 100%. Tamoxifen is the most controversial subject on any message board related to BC.

Britt

Shadow, you are undoubtedly correct - or at least one of the most controversial!

Some of us are fortunate enough to have little or no s/es. Then, there are those like you and I who experience the worst of them.  It is an individual decision, and I am not here to attempt to influence anyone about this drug, or to give advice or suggestions.  I just chose to share my personal experience with Tamoxifen.  I chose now to say "no" and that is the title of this thread.

nealeann

Hello,

It has been good reading others experiences. I started Tamoxifen about 2 months ago and since have had hot flashes, feelings of anxiety and have not had a period.  I like the suggestion of either lowering the dose or splitting it between morning and evening.  I will speak to my oncologist tomorrow. 

Thank you all for sharing

dreaming

I took it only for 3 months, the side effects were not worth the 3% raise in survival:from 70% to 73%, My side effects were severe. I am a long time survivor.

nealeann

I spoke to my oncologist two days ago and he gave thumbs up to going tomoxifen with all the side effects I was experiencing.  I feel better all ready.  I may re-visit it after I am all done with the reconstruction.