Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Deciding not to take Tamoxifen

I'm trying hard to sort out the risks of taking Tamoxifen vs not taking it.  I'm finished with the lumpectomey/radiation etc and will be on Herceptin until April.  The Tamoxefin data is confusing and is often not sorted well enough for specific cases/degrees of cancer.  I understand the risks well but not the benefit of Tamoxifen, which is proposed to reduce the chance of recurrence of breast cancer by ~50%.  The problem is this: 50% of what!!!?   

What matters to me is the chances of getting breast cancer recurring without treatment based on my current level of cancer.  My doctor felt I had a 5-10% chance of a recurrence without treatment (lets call it 10%); and this would be reduced by 50% with Tamoxifen down to around 5%.  

So by these numbers, Tamoxefin reduces my actual/real chance of getting cancer recurring by 5% (10%-5%).  So of every 20 people in my situation, only 1 would benefit from Tamoxefin; and 20 out of 20 would get all the side effects.  Is this logical thinking?  Also, does the 10% recurrence rate with no Tamoxefin treatment seem correct?

I'm still trying to find other potential benefits from nutrition and possibly alternative approaches to SERMs.  But for now, I'm not going to take Tamoxefin and won't unless I find a better argument than I have heard from my doctor so far.  At the same time, I'm frustrated that there is so much information bashing the drug, but little to no recommendations to just not take it.

Thanks for any comments or advice.  I'm glad I found this site!

Age: 45   Health: very good, work out 5 times a week, eat well 

Diagnosis: 2/7/2011, IDC, 1cm, Stage I, 0/3 nodes, ER+/PR+, HER2+ 

«13

Comments

  • thefuzzylemon
    thefuzzylemon Member Posts: 631
    edited September 2011

    Good evening!! I have to say...its always your choice. It looks as though (I'm not an expert) that you are an early stage and I may have thought it through more had it been diagnosed sooner.

    Have you talked with a pharmacist? Or, the ONC? This drug is one of the best understood medications because of how long its been around. Horror stories get more publicity than happy endings. New drug makers bash older & cheaper meds so they can corner the market.

    I just started tamoxifen this week. And, for me, its the right decision.

    Oh...and I don't do math or statistics. I stick to logic: )

  • motheye
    motheye Member Posts: 4
    edited September 2011

    Thanks for the reply.  It seems that no matter who you talk to, Tamoxifen is given as the best option.  But it seems close to a toss up as to benefits vs side effects (which i don't think are terribly bad).  I think doctors don't have option to suggest alternative approaches due to malpractice etc, so Tamoxifen is the safe recommendation for them.

     Thanks! 

  • cycle-path
    cycle-path Member Posts: 64
    edited September 2011
    motheye, have you looked at the cancermath site? http://www.lifemath.net/cancer/breastcancer/therapy/index.php
  • omaz
    omaz Member Posts: 4,218
    edited September 2011
    motheye - I was told that HER2+ cancer is more aggressive.  You don't mention what grade your tumor cells were, that can be an important consideration.  Also, the degree of estrogen positivity may be something to think about.  Perhaps someone who had estrogen receptors on 90% of their cancer cells might think differently compared to someone who had estrogen receptors on 10% of their cells.
  • 1Athena1
    1Athena1 Member Posts: 672
    edited September 2011

    motheye,

    As with all medications, there is no knowing exactly how Tamoxifen will affect you or benefit you unless or until you take it, so my advice is to read everything with an enormous grain of salt. Side effects and therapeutic effect are very individual and the existence of one does not predict the other. Tamoxifen is the more successful choice available for hormone positive premenopausal women as a group, but will it be the best thing for YOU as an individual? Only experience will tell you.

    The second thing is that you can always start and stop it at any time. It's natural to feel apprehensive because you say to yourself  "I am beginning therapy with x medication" just as you say "I am having surgery for x." The unconscious thought is that somehow once you are down the road you can't turn back or stop, or that some irreversible process has begun. In the vast majority of cases, nothing could be further from the truth. I had to keep reminding myself of this too as I finally decided to try Tamoxifen. You can always take this one day at a time.  There will never be any guarantees until the future is upon you and you will know that it either worked or didn't. Sometimes, it best to step back and say: "ok, I have enough information." and go by instinct, which has now acquired some wisdom in the process. In other words, an educated "hold your nose, close your eyes and jump" one way or the other.

    Good luck with whatever you decide to do. 

  • bluepearl
    bluepearl Member Posts: 133
    edited September 2011

    I had the same issue but your cancer is a bit more aggressive with HER+. All side effects have to be listed but you may not get them all, or any. Your are active, so that reduces the possibility of both stroke and DVT, and uterine cancer for that matter. The one side effect I am not crazy about is fatty liver.

    You might want to look up taking aspirin 3 times a week, a small dose of a beta blocker, & metformin...all of which show very good promise in preventing recurrances. I'm on all of them. Small doses of metformin won't hurt you and neither will the other two.

    I decided to take it and haven't experienced any effects, not even hot flashes (but I'm 61 so they might be more problematic for you). And remember, even low risk breast cancers have a 10% chance of showing up later. Statistics are all fine.....my mammogram had a likelihood of about 5% showing up for cancer....and it did.....so I'm not too concerned about stats. In fact, even that 1 out of 9 women end up with it.......crikey, I have MORE than 9 friends with it!!!!! I didn't think, based on chances we'd all get it, that I would too....WRONG.

    So, I agree....whatever you decide, jump in! 

  • snorfia
    snorfia Member Posts: 10
    edited September 2011

    I had a hard struggle to decide to take Tamoxifen, and finally decided because I wanted to know that if the cancer came back, I had done what I could to prevent it.  No regrets, right?  Well, I'm not tolerating it too well, and talked the the MO today, and he said take a break for a month, and then consider trying again.  So it's a reversible decision.

  • motheye
    motheye Member Posts: 4
    edited September 2011

    Thanks so much for all the replies, they are very helpful.  I'm trying to learn a lot in a short time so it is confusing.  cycle-path, THANKS for the cancermath site, that may be just what I need!  Any other comments appreciated.  Cancer walk on Sunday!

  • bluepearl
    bluepearl Member Posts: 133
    edited September 2011

    Snorfia: try taking half in the morning and half at night. Also, I am bringing an article I found in a cancer journal about dose reduction to my doctor.....seems concentrations of tamoxifen in the blood remain at therapeutic levels at half doses or every-other-day doses....BUT DON"T STOP because of this....I want my doctor's opinion first! I found the half in morning etc. was beneficial for SE.....

  • sweetbean
    sweetbean Member Posts: 433
    edited September 2011

    bluepearl,  can you post where we can find the article?  I would like to bring that to my onc.  I am not having a problem with Tamox, but there is no need to take 20mgs, if 10 will do.  I found some older studies that indicated a half dose was just as effective, but would love to see something more recent.  

  • bluepearl
    bluepearl Member Posts: 133
    edited September 2011

    "Effect of Blood Tamoxifen Concentrations on Surrogate Biomarkers In a Trial of Dose reduction in Healthy Women" Journal of Cancer Oncolgy. It is older but it was recently downloaded from the same journal to a newer journal as of Sept. 23/11.....why, I don't know.....but my doctor told me it wasn't done on women WITH breast cancer so can't be determined if it would be advisable. However, here, in Canada they are doing a clinical trial on metformin, so with my doctor's permission, I take one half tablet daily...so I kind of put myself in the non-placebo group :).

    Sweetbean: with your diagnosis, take the tamoxifen as is. BTW...John Hopkins University, from the New England Journal of Medicine, vol.364 p.2381 states that the drug exemestane is better than tamoxifen (I am assuming you are post menopausal) and with very few side effects, if any. In a trial of 4,560 women AT RISK for breast cancer, NO serious side effects were reported. My doctor said he's switch me over if I wanted, but I think I'll do half and half for now...and see. But I am tempted. 

  • bluepearl
    bluepearl Member Posts: 133
    edited September 2011

    I mean 2-3 years tamoxifen-2-3 years exemestane.

  • jenny12000
    jenny12000 Member Posts: 16
    edited October 2011

    Motheye:

    What's your final decision?Are you still not taking it? I am having the same struggle. The radiation is done a week ago and this is the time that I am supposed to start taking the Tamoxifen. My MO doctor said that it's strictly up to me if I should take it or not in my case (DCIS). He said if it's stage 1 and up; it would be I have to take it. He said the only reason he recommends is because I am young (just turned age 51 a few days ago which I didn't think it's that young for the breast cancer) and he stated that again that that's the only reason he recommends me taking it. I asked the benefit to the other breast and he said the study is even weaker on that. He said that I have to take it now...even I decided to take it 3 months from now, I can't.

    I also talked to my RO doctor (who I admire/respect very much). He told me it's up to me as well. He would respect my decison if not take it. But if it's his wife, he would recommend to take it. He said there is this drug to lower the chance. Why not? The side effect just hot flashes which is not much compared to the benefits. He also stressed the survival rate is the same (because all breast cancer women are so diligent in early prevention). He said if I chose not to take it and if the cancer does come back...I can just do the masectomy at that time. 

    I too is very active. I am currently just started a 16 weeks half marathon training program with a group (I am one of the oldest persons there:). And, I know I am right on the edge of menopause. With all this, I decided not to take it...but still, I am still struggling and not sure if this is the right decision...etc.(my ER is 98%, PR is 96%)

    If anyone can chime in, it's much appreciated. This is such a hard decison. I wish the doctors can just make the decison for me which they really did (they both recommended to take it...although they said it's strictly up to me)???      

  • sweetbean
    sweetbean Member Posts: 433
    edited October 2011

    Hi there bluepearl,

     I am 37, so premenopausal.  I am actually doing fine on the 20mgs, but if 10 worked just as well....that would be nice.   

  • elimar
    elimar Member Posts: 5,882
    edited October 2011

    I went thru' this decision two years ago, and after all the reading I did (abstracts, journals, personal accounts) I decided that while there was no way to know if I fell into the group who would stay cancer-free without it, that I did not want to risk falling into the group that might have a recurrence without it.  I just took the "try it for a while" approach.  My ER is 95%, PR is 85%.  I don't have high blood clot risk, I am being monitored by my GYN for endometrial S/E's (none yet), and finding ways to deal with the annoying hot flashes.  I think that the statistics do support this "tried and true" drug therapy.  I'm sure, with your ability to weigh your individual risks vs. benefits,  you will come to the best decision for yourself.

  • elimar
    elimar Member Posts: 5,882
    edited October 2011
    sweetbean,  I'd love to know if 10mg. could be just as effective.  I just don't think that there is a lot of motivation to find out.  The drug companies profit would fall to half if it was, so don't hold your breath for that study to come out anytime soon. 
  • motheye
    motheye Member Posts: 4
    edited October 2011

    Jenny, don't think of it as a final decision, as you say.  You can start now and stop if you change your mind.  You can wait and start taking in a few months if you need the time to decide; I think your doctor is bullying you (somebody correct me if I'm wrong).  However, waiting will slightly reduce Tamoxifen's effectiveness.  Do not feel pressured to make a decision. 

    "The side effect just hot flashes which is not much compared to the benefits."  The side effects can be overblown, but are much more significant than that, if your doctor told you that I'd be corncerned about his transparency.

    "He also stressed the survival rate is the same (because all breast cancer women are so diligent in early prevention). He said if I chose not to take it and if the cancer does come back...I can just do the masectomy at that time."

    I don't think that is accurate or that it is that simple, can someone help on this? 

    I have decided to wait until I can get a second opinion from an alternative therapy doctor (if I can find one).  Where do you look?!  I want to hear an opinion that doesn't mimic the establishment. 

    Using the Cancer Math site, Tamoxifen improves my 15 year outlook by 3%, which is borderline insignificant.  When you hear that Tamoxifen helps your prognosis by 30-50%, that sounds great, but remember that the chances that the cancer will come back is not that high at all (I'm refering to my case only).  If I can find some evidence of nutrition or natural estrogen blockers etc that can improve my prognosis by 1-2% overall, I will not take Tamoxifen.  Like you, I'm hoping someone here will say that I stupid for not taking Tamoxifen, or saying yeah, you're looking at it the right way; but its not that simple and the decision is personal.  It would have been nice to have a year or two warning before diagnosis so we could prepare better for this!

    I appreciate the comments and all the archived posts that are a wealth of information. 

  • gutsy
    gutsy Member Posts: 26
    edited October 2011

    I was really aprehensive about taking tamoxifen reading all the horror stories. Yes, I have some side effects but tolerable. I will take every % I can get to bring the recurrence risk down.

  • jenny12000
    jenny12000 Member Posts: 16
    edited October 2011

    Thank you, Motheye, Elimar, and Gutsy!

    You are right and I am definitely going to wait for a few more weeks. My breast is still very sored and red from radiation. Just feel a break is needed (poor breast for what's been going thru:) 

    Diagnosis: 6/23/2011, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+

  • MarieKelly
    MarieKelly Member Posts: 33
    edited October 2011

    ELIMAR,  there has been at least one study looking at the efficiency using a lower dose of tamoxifen which was published back in 2003. Not sure if there was ever any more study done on it.

    A Randomized Trial of Low-Dose Tamoxifen on Breast Cancer Proliferation and Blood Estrogenic Biomarkers http://jnci.oxfordjournals.org/content/95/11/779.long"...In summary, we found that reducing the tamoxifen dose to 1 mg/day retains its antiproliferative activity on breast cancer, as assessed by Ki-67 expression, without substantially modulating the levels of most of the analyzed circulating biomarkers of breast cancer and cardiovascular disease risk. A lower dose may improve the therapeutic index of tamoxifen. Indeed, studies comparing lower tamoxifen doses in trials with more definitive clinical endpoints are warranted."

  • pinkcandy001
    pinkcandy001 Member Posts: 17
    edited October 2011

    I also have had a tough decision to make.  Originally diagnosed with 2 IDC lumps.  Lumpectomy, radio 3 weeks.  Put on Tamo, but because of a leg injury, caused among other things terrible problems with my leg, couldnt walk.  My GP has been brillant (4th to date), my onco terrible.  My GP demanded that they redo my pathology, as conflicting info from onco team.  It was then discovered that one lump was a DCI no invasion, but grade 2, the other 14mm, 10 spread but grade 1.  After much stress after a terrible and after having caught every infection known to man, my onco after 6 months then said that I only had a 4% if I had no hormone therapy.  I ask u.  My onco said I had as much chance of recurrence as the next person, maybe slightly.

    I think that these forums are great and the more people who share their experiences it makes it easier to come to some sort of conclusion, decision - call it what u may.  To have to decide against taking a treatment is agonising, and not nice.  Good luck to every one.

    I have heard that flaxseed (which some people have taken instead of hormone therapy is a no no), has anyone else got any feed back, some people have said that it should not be taken.

    My GP said that if walnuts were good for President Nixon (who was diagnosed with cancer, and who had the best medical care known to man at the time), was advised that the properties of walnuts, and the oil were beneficial - hence I have a couple of walnuts every now and again, my foods are mainly organic, I say that cause I havent started to make my own bread as yet.  Eat healthy stay healthy.

    Take care to all

    Pinkie 

  • elimar
    elimar Member Posts: 5,882
    edited October 2011
    MarieKelly,  Have seent that study.   It's small, interesting, and one conclusion they draw is that more study is needed.  Haven't seen any more.  Specifically, I would be very interested in a 10 mg. vs. 20 mg. larger study.
  • hondagirl
    hondagirl Member Posts: 26
    edited October 2011

    It's a tough decision.  I put taking Tamoxifen off for a while but finally decided to take the plunge.  My breast surgeon said I need to take it seriously.  I thought that was ironic considering that was the whole reason I wasn't taking it...b/c I was taking its potential side effects etc. seriously.  Anyway, starting taking about 10 days ago and doing fine.  No SE's as of yet.  I hope it stays that way. 

  • BreatheDeep
    BreatheDeep Member Posts: 13
    edited August 2015

    Dear Motheye, I read your post from 2011 and am wondering how you, or anyone in this posting has been doing either on or off Tamoxifen. I am trying to make my decision right now about whether to take it or not as many of you stated. I completed radiation 3 weeks ago and my Dr. insisted that I "will take it". But the side effects scare me and I am going to see a naturalist (used to be a conventional MD) this week for another opinion. I have never done well on ANY prescription drugs and don't want them in my system. Of course, I also don't want my cancer to recur. Can anyone who did not take it tell me how they are doing now a few years later? Thank you!

  • tgtg
    tgtg Member Posts: 75
    edited August 2015

    Hi, Breathedeep--I'm not Motheye and I didn't see this thread when I decided to decline Tamoxifen or an AI in early 2012. But I am now 2 and a half years past the lx and rads (had my last check in July), I am cancer free and enjoying life even more than before. I will deal with a recurrence if and when it happens--and only then. In the meantime, I look forward to my check-ups and imaging as "due diligence" and as ways of being assured that everything is fine; I welcome them as "well-checks," not as dreaded, ominous times that will reveal a problem.

    In reaching my decision to pass on hormonal treatment, my reasoning was similar to Motheye's--50% reduction of a low recurrence risk just didn't make the risks worth it. And I was not thinking about the risk of transient side effects, but of the large and even life-threatening comorbidities that Tamoxifen and AI's can and do create, like stroke, deep vein thrombosis and PE, glaucoma, osteoporosis, etc. My tumor was stage 1, grade 1, with clean margins,no nodal involvement, and a low Oncotype score, so at 71 years of age I liked the odds. And when the MO who ordered the Oncotype test called with the results, she said she agreed that my decision to pass on hormonal therapy made a lot of sense for my case.

    On the subject of MO's, by the way, she said at the outset of our one and only meeting, that her role is to give her best advice, not to dictate a treatment plan or to bamboozle a patient into doing something out of fear or intimidation. She did not tell me that I "will take the drug.". In fact, when she and I were discussing hormonal therapy, I asked her why MO's prescribe a drug like Tamox so freely, even though it causes weight gain in women who should be controlling their weight in order to lower their risk of a recurrence or a new cancer! She was at a total loss for words, and had no answer to that logical question, except to say that it raised an important dilemma. It sounds as if your idea about seeing the MO-turned-naturalist for another opinion would be a good idea, given your feelings about the drug and also given the treatment-by-intimidation approach of the first MO you saw.

    This is a hard decision to make, and one that shouldn't be made lightly. It is also a highly personal decision, based on your stats, on your comfort level with those stats, and on your expectations. I wish you luck as you grapple with this question and peace of mind once you decide either way. Trudi

  • specialk
    specialk Member Posts: 9,211
    edited August 2015

    breathedeep - just wanted to let you know that your question to the OP may go unanswered - motheye has not logged onto this site for about a year. This is an old thread, the post before yours is from 2011, and you can check whether an individual poster/member comes here regularly by clicking on their member name - it will show you the last time they logged in.

  • BreatheDeep
    BreatheDeep Member Posts: 13
    edited August 2015

    Hi Tgtg,

    Thank you so much for your response and sharing what you did about your own experience. I feel about 99% sure I will not go on Tamoxifen, and after meeting with the naturalist yesterday, I believe that spending time on truly balancing out my life and health will keep me healthier than this drug. She reminded me also, to focus not on the % of recurrence, but on the % of NON-recurrence, and when I look at it that way, it feels better than the the other way around. Mindset is probably the biggest thing to work with in going through breast cancer, and it has certainly been fear-producing for me. But now I want to refocus and make decisions and choices from a place of trust and of intuition knowing my own body. I also appreciate you reminding me about the intimidation factor involved in what my oncologist said as that really felt inappropriate coming from her without even any option to discuss options. So again, thank you for taking the time to write, it is greatly appreciated.

    SpecialK - thank you for letting me know how to check if someone has been on the website, I am brand new here and did not know that so thank you!

  • Woods
    Woods Member Posts: 6
    edited September 2015

    Hi, I am halfway thru radiation and started a period so my doc said start Tamoxofen. I took it for four days and was sicker than a dog. Constant nauseu, all over felt AWFUL, like I had the flu. Told my doc and she said ok go off for now during radiation. I am seriously thinking about NOT taking this drug. I am 56 years old. I had Stage 1 BC, tumor 1cm, no node involvment HER2 negative. I did the cancer math test and it said without Hormone Therapy it would cut my life short by 103 days...you know what I can take that...that's where I am at the moment anyway.

  • SassyMutt
    SassyMutt Member Posts: 1
    edited September 2015

    I was put on Tamoxifen at the end of 2014 for LCIS to reduce my risk of developing invasive breast cancer. I was really nervous too about taking it because of everything I read! I decided to give it a try, knowing I could choose to stop at any point.

    Fast forward 8 months, and I'm doing well on it. I've had a few hot flashes, and sometimes wake up sweaty at night. And lately, I've noticed my hair is coming out more than usual. All of those are normal side effects and they don't impact my daily life at all. So, I'm glad I gave it a try!

    Everyone is different, but you could always try it and stop it if it causes trouble. I feel like the 50% reduction in risk was well worth it for me!

    Good luck!

  • speace
    speace Member Posts: 3
    edited September 2015

    I've been on tamoxifen since may 11 2015, no problem with amy side effects. I guess I was lucky and it's ht or miss , but I'm willing to take it and chance any side effects if it will reduce my chances of b.c. returning. Good luck