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Say NO to hormonal therapy!!!

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Musicgal
Musicgal Member Posts: 7

The ATLAS Study out of Oxford was massive. it resulted in the recommendation to go from five years to ten years for hormonal therapy after BC treatment. The figurehead Harvard researcher is quoted " if it is being tolerated well, why not ?"He was referring to AIs in the article


I sent him a picture of my face, two years after finishing ten years. SO scary. So painful. ten deep cystic lesions on my lymphedema arm. no response, of course.

My oncologist bounced into the examination room at my 6 month check up and gleefully announced that I would stay on Tamoxifen for ten years, because there was a 50% reduction in recurrence. This was a gross exaggeration. Originally , I had an 11%.chance of recurrence of the same cancer and my original oncologist told me that noone gets below 10%..

The real reduction in recurrence of the SAME cancer is 2-3%. This reduction is not worth SEVERE RECALCITRANT CYSTIC/NODULISTIC ACNE. This skin disease is very painful, difficult to treat, and VERY expensive.

If I had any energy, I would sue him, but I am leading a very quiet, indoor life, and gaining weight as walking is difficult because of bone, joint muscle and ligament pain from Isotretinoin- the ONLY drug that will shrink the sebaceous glands back to their normal size and function

Say not to hormonal therapy and yes to chemo!!


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Comments

  • beesie.is.out-of-office
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    "The real reduction in recurrence of the SAME cancer is 2-3%."

    That may be the case for you and your cancer, but that is not the case for everyone else. The absolute benefit each of us gets is relative to the risk that we face from our diagnosis, and that is different for everyone.

    And it is absolutely untrue that no one gets their risk below 10%. Lots of people have a metastatic risk below 10%, either based on having an indolent cancer, or following treatments such as chemo, Herceptin (for those with HER2+ cancers) and endocrine therapy.

    Is the benefit of endocrine worth the risk for all patients? Of course not. But for some patients, the benefit is significant and endocrine therapy might very well be life saving.

    I'm truly sorry you had such significant side effects, but your situation is unique to yourself and does not reflect the benefit others will get, or the side effects they may experience. Each of us should make the decision on endocrine therapy based on our own diagnoses and situations.

  • Musicgal
    Musicgal Member Posts: 7
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    Dear Beesie,

    Please accept my apologies for upsetting you with my topic.

    I do want to clarify:

    The 2-3% came from the Atlas Study- not from me. No one can really know the benefit of their hormonal therapy, and of course, each of us makes our own choice.

    The 10% came from Dr. Stephen Bowers, a noted researcher, and my oncologist for the first 2-3 years. I am sure that has changed for us " extreme" survivors ( did you see the post on this new study? Made me feel really weird.)

    Again, I am truly sorry to have agitated anyone, but it is VERY important to me that our community knows of this development. The first wave of ten year women , now 12-13 years out from finishing treatment, should know of the possible side effect of sebaceous glands being hyper stimulated by Androgens produced by hormonal therapy. This skin disease is much more debilitating, in my experience, than all my treatment, plus lymphedema, plus side effects from Tamoxifen.

    You probably have already noticed that the number of mentions is increasing, but it seems that the majority of community members posting are in the process of treatment, not years past it. I messaged with one member who said that she never connected her skin problems with her BC treatment until it suddenly dawned on her to post on BCO and bingo- she found others suffering.


    Please forgive and live well

    All the best thoughts to you.



  • meow13
    meow13 Member Posts: 1,363
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    Musicgal,

    I thank you for sharing what happened to you. I for one like to hear from everyone. When I was first prescribed anastrozole I was told there are no side effects by my oncologist however I looked it up. I had the joint pain it was pretty severe although it took me a year and a half to tell my oncologist. His reaction was why did you wait so long. Well because I thought I could exercise through it. I was doing 3.5 mile walk everyday. I did everything I could there was no getting past the pain. My skin suffered for the 4 years I was on AI treatment. I have aged terribly.

    I hope your skin condition gets better! I did not have the acne but my skin got really dry.

    Better treatment is needed.

  • DorothyB
    DorothyB Member Posts: 143
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    Looking at the Atlas study, it appears to be only looking at benefit of taking it past 5 years, but doesn't seem to say how much benefit we get in the first 5 years.

    I opted to do hormone therapy and opted out of chemo.

    Each person is different and our cancers aren't identical, so we each need to decide what we are comfortable with.

  • beesie.is.out-of-office
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    Musicalgal, I'm not upset. I simply get concerned when someone makes a blanket statement such as "Say NO to hormonal therapy!!!" Hormone therapy is prescribed because it has been proven in study after study to save lives. Does that mean it's the right or necessary treatment for everyone? Absolutely not, but it is a lifesaving treatment for some. I hope that few of the women who will truly benefit from hormone therapy say "no" to it. I also hope that those who get little benefit have that clearly explained by their doctors, so that they can make the best decision for themselves.

    What the Atlas study showed is that when looking at recurrence rates and mortality for the specific period of years 10 to 15, those who took Tamoxifen for 10 years had 25% fewer recurrences and a 29% lower mortality rate during those later years, versus those who had stopped taking Tamoxifen at 5 years.

    Whether that risk reduction is worthwhile, and worth exposing oneself to 5 more years of the side effects from Tamoxifen, depends very much on the individual and the specifics of the diagnosis. Some diagnoses are more likely to recur early on whereas others present a longer term risk. Some diagnoses are relatively low risk to begin with (yes, even lower than10%) whereas other diagnoses present a very high recurrence risk. The 2-3% absolute benefit from the Atlas study was an average based on all participants; for some the benefit would be smaller and for others the benefit would be larger.

    I looked up Dr. Stephen Bowers and could only find a general surgeon (with no speciality in breast cancer), not an oncologist. I trust I didn't find the right guy. Regardless, there's no question that recurrence risk often is less than 10%. The TAILORx study, released last year, certainly showed that to be the case.

    I am not trying to stifle the discussion or dismiss your concerns. It's important to have an open and factual discussion of both the pros and cons of endocrine therapy. That is different however from telling other patients what they should or shouldn't be doing based on one person's experience, or making a judgement for others as to what level of benefit makes a treatment not worth taking.

  • gb2115
    gb2115 Member Posts: 553
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    I agree the blanket statement is concerning. I hate to nitpick, but I have to disagree with the say no to hormone therapy and yes to chemo statement. It's all in how things are worded. That could sway an impressionable person away from hormone therapy that could save their life, you just don't know. That's up to people to decide with their doctors input. I'm sure there are many many chemo patients with horrible side effects that wish they could do hormone therapy instead, think triple negative. The grass is always greener... except when it's not.

    I say this as a person truly miserable from hormone therapy, but it's all I've got between a positive lymph node and likelihood of metastatic recurrence. Mammaprint testing showed us that for me, chemo could cause more harm than benefit, but hormone therapy added quite a bit of benefit. I'm trying to deal with side effects as gracefully as I can. In any event, saying no to hormone therapy and yes to chemo would not have been in my best interest. Also, we take risks in life. No pharmaceutical comes with guarantees of no problems. Reading the PI will scare the crap out of you. We make the best choices we can and deal with the cards that are dealt.

  • ksusan
    ksusan Member Posts: 461
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    I'm fortunate to have had manageable (though significant) side effects from tamoxifen. I'm sorry yours were more severe, and I agree that oncology does a generally bad job of acknowledging and providing informed consent about the side effects. That said, I will fight to remain on tamoxifen for 10 years because statistically it has a significant effect on my longevity.

  • meow13
    meow13 Member Posts: 1,363
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    If it helps any my dry skin and hair is improving been off over 3 years now. I hope the acne starts improving soon sounds painful. My joint pain is really so much better really improved.

  • Musicgal
    Musicgal Member Posts: 7
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    Thanks KSusan,

    The shock was after I finished all ten years...the severe cystic acne started as one bump on my lower face...no big deal...progressed over 2+ years to become unlivable- that is why I want women to know... there are more and more reporting acne after finishing- not while on Tamoxifen- cystic acne, not pimples


  • ksusan
    ksusan Member Posts: 461
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    Good to know.

  • meow13
    meow13 Member Posts: 1,363
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    Wow after finishing oh my!

  • sbelizabeth
    sbelizabeth Member Posts: 955
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    Almost eight years ago I faced a diagnosis of Stage III, 99% ER+ breast cancer. Of the twenty-six nodes removed, six were filled with cancer and two were so stuffed with it they wouldn't absorb any blue dye or radioactive tracer during the sentinel node search. They threw the kitchen sink at my disease. Hard-core chemo, mastectomy, axillary node dissection, enough radiation to cook a moose.

    I hope they let me stay on letrozole for the rest of my life. Yes, I have achy joints and I'm stiff and creaky when I first get up. But I gotta say this...even if the drug caused me to grow feathers or warts or extra toes, I would still take it faithfully and be grateful for the science that provided me such a shield of protection. I would rather deal with the side effects than die of breast cancer.

    But that's just me.

  • sbelizabeth
    sbelizabeth Member Posts: 955
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    Almost eight years ago I faced a diagnosis of Stage III, 99% ER+ breast cancer. Of the twenty-eight nodes removed, six were filled with cancer and two were so stuffed with it they wouldn't absorb any blue dye or radioactive tracer during the sentinel node search. They threw the kitchen sink at my disease. Hard-core chemo, mastectomy, axillary node dissection, enough radiation to cook a moose.

    I hope they let me stay on letrozole for the rest of my life. Yes, I have achy joints and I'm stiff and creaky when I first get up. But I gotta say this...even if the drug caused me to grow feathers or warts or extra toes, I would still take it faithfully and be grateful for the science that provided me such a shield of protection. I would rather deal with the side effects than die of breast cancer.

    But that's just me.

    Edited to add: I deleted the post above because it was a duplicate of this one. Weird.

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    Thank you sbelizabeth, this made me cry. I feel the same way about tamoxifen. I swear at the bottle of pills before I take it every day, but I know it's my best insurance against disease recurrence.

    Buttwrci

  • Yogatyme
    Yogatyme Member Posts: 1,793
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    It is unsettling to hear that an oncologist would tell a pt there are no side effects to a medication.....whether a cancer drug, other Rx drug or OTC drug. There are potential side effects to everything we put in our body.....even water ( I recently learnedyou could drink too much water). I’m sure the people in Flint MI would agree.

  • erento
    erento Member Posts: 187
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    I'm with sbelizabeth on this, being high stage and high grade, I take the nasty side effects over dying, granted the side effects don't kill me.

    I'm sorry you're experiencing this, I assume you have seen a dermatologist and getting proper treatment? I had severe acne for a couple of years in my early 20s (probably not as bad as yours) and yes, it can be very very upsetting.

  • iamnancy
    iamnancy Member Posts: 641
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    Musicgal - I wish you wouldn't have deleted your original post - I wanted to know what caused you such pain.

    I hate taking anastrozole and its been 7 yrs.... I am fat and my hair is thinning so quickly....do my joints hurt -yes... do I spend sleepless nights -yes.... I have eczema or psoriasis - never had it before.... however, I am afraid to not take this pill - I am afraid the cancer will come back if I stop taking it.

  • meow13
    meow13 Member Posts: 1,363
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    I am sure my oncologist meant no permanent meaningful side effects. But I beg to disagree.

  • totallytubular
    totallytubular Member Posts: 17
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    I'm with you. very inflammatory headline. this can be a lifesaving treatment. it is in the numbers. I am not sure that having acne is as serious as having the risk of not taking hormonal therapy and metastatic cancer. the side effects have to be weighed out. it can be a difficult med to cope with for certain. I was quoted a larger number like 30% reduction from my MO at Sloan Kettering.. but what do I know my brain and memory is shot from lack of estrogen. lol. best of luck here. it's not a fun drug.. but a necessary evil.

  • meow13
    meow13 Member Posts: 1,363
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    Musicgal should be able to post what she feels. I am sure the cystic acne causes her much pain. She shouldn't feel like she has to delete her posts because of the comments.

  • mavericksmom
    mavericksmom Member Posts: 1,117
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    Musicgal, first, I love music too and in fact, it is has proven to be the best therapy for my state of mind! I too wish you hadn't removed your original post.

    There is a YouTube video of a doctor who uses the exact words: "Say No to Aromatase Inhibitors" He does have some points, but once I committed to taking the Letrozole, I won't stop unless I find the side effects are too difficult to continue.

    I think we all need THERAPIES THAT DO NO HARM!!!!!! No patient should have to deal with horrible side effects just to prevent cancer from returning! No one ever speaks of side effects after stopping the drugs.

    I also feel that the drug companies are all too comfortable having the AI's and are not interested in better treatments. I hate that AI's have become a one size fits all if you have estrogen and progesterone positive cancer! That is wrong on so many levels, but since we, the patients, don't know if we are the patients who should take it, all we can do is follow our doctors orders!

    I do not feel taking an AI is a great choice, yet I am doing it. Messing with hormones is tricky at best. Just because it works doesn't make it right, especially if it comes with horrible side effects. I think too many people are so afraid of cancer that they would do anything. I am not afraid of cancer, I am afraid of cancer treatments. I have no idea if I will ever allow another mammogram again, but that is a different topic altogether.

    This discussion has to be continued and we all need to press our doctors and researchers to look for better treatments!

    I worked for a big pharmaceutical company and believe me, it all comes down to money. Research is extremely expensive, most people have no clue how difficult it is. I do, I did research on more drugs identified only with numbers, than I can count. The companies will only work on drugs that the actuaries have deemed to be profitable and by profitable I mean will make millions if not billions of dollars! The seven years given for patents is often too short to recoup the money spent on research and make a profit, but that is what they have to deal with.

    Beesie has often commented on my posts and I always find her to have great information. I am absolutely sure you didn't get her upset, but all comments have something worthwhile and are helpful to someone.

    Meow, just like Beesie, I love when I see you commenting on a thread!




  • edj3
    edj3 Member Posts: 1,579
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    Chiming to agree that Musicgal absolutely can post whatever headline she prefers. Her experience w/ hormone blockers is as valid as anyone's as is her position. That's also true of the people who choose to take the hormone blockers regardless of side effects.

    Look, if one post on an internet forum is going to change someone's treatment decision then it's pretty clear that decision wasn't solid to begin with.

    As plenty of you have said, our options aren't great and we each have to weigh out the risks associated with taking or not taking a treatment path. I personally appreciate it so very much when other poster share their real experiences. This IS my first breast cancer rodeo and your experiences help me make decisions for my own treatment and reassure me that I am not alone.

  • Treelife
    Treelife Member Posts: 1
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    • Hi all... Started reading again about tomoxiphen tonight, as I'm 6 years in after full macectomy, diep reconstruction, chemo fec, 35days radio, full hysterectomy, 10year tamoxiphen, I was stage3 aggressive hormone cancer.. Sorry but I don't know all the abbreviations on here.... I took tamoxifen for first 4 years I started missing 1 here & there & just decided to stop, I still have bad joint pain, bone pain, hot flushes, low focus, low moods,... I was discharged from oncologist a year & a half ago,... Felt had no one or no where to discuss anything about my fight with am I doing the right thing? My doctors are useless & don't even rember I had cancer that's another story....long story short, having some tests, & have been referred back to oncologist... Seeing a different one!... She seems very concerned that Iv stopped... This is making me rather axcious... I took my tamoxiphen for 7 days.... 3 of them I hardly got out of bed, cryed with pains in my joints & bones, fatigue to the point of staying in bed.... I fight everyday with what to do.... As now my oncologist is wondering weather to add another year on my taking tamoxifen which will be till 2024...... Fight mentely that I have a better quilty of life without it, but still not pain free ever.... Is this the menapause? From past treatments? Ageing, just turned 52, I don't know even where to start reading... To help myself make my choice.... Was interesting reading on here what other women thought....
  • cowgirl13
    cowgirl13 Member Posts: 774
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    These are my thoughts only on whether to take or not take tamoxfin/arimidex. First let me say that everyone has the right to post their thoughts on this thread.

    I am not stage IV, nor do I have children, and I am 73 years old however, the first thing I think of when I read that someone is trying to decide on the hormonals is what I have read of the stage IV mothers--the fear of not seeing your children graduate from school, marry, see their grandchildren. I will never forget these women posting on their losses and I have been reading about this for 10 years on BCO. This is just where I am coming from and I have to respect that others may not see it this way.

  • Artista928
    Artista928 Member Posts: 1,458
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    I can't do AIs. Debilitating ses. Thankfully tamoxifen is doable. I'm considered high risk beyond my profile so thankfully even though I'm post menopausal, T is an option. But I agree. With no cure in sight, need better txs.

  • alicebastable
    alicebastable Member Posts: 1,939
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    Few people who post on here LOVE anti-hormonals. I also didn't particularly LOVE my lumpectomy or LOVE radiation. But they are all necessary for many of us. If I were just about to start treatment and saw this thread title, it would worry me. I wish it had been titled "I Said NO to Anti-Hormonals!"

    I don't think the medical/pharmaceutical world is deliberately trying to torture any of us, and they're not singling out breast cancer patients for the worst treatment. I have friends with other kinds of cancer (and other diseases), and their treatments suck, too. And there are some types of cancer where the treatment is still more hit-and-miss experimental. But you know what? It's still a hell of a lot better than it used to be. And somewhere in the future, it will be a hell of a lot better than current treatments - or perhaps it will be a curable or even preventable condition. There will always be people who have bad reactions to ANY kind of medication. It's not a perfect, or perfectly predictable, world. I'm sorry that happens to anyone, but it doesn't mean other people will have those reactions or should forego treatment.

  • erento
    erento Member Posts: 187
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    Guess what? Being sick sucks, treatments suck, dying sucks. But what alternative do we have if we want to improve our odds of not dying prematurely? Think about breast cancer treatments throughout the ages, we've come a long way and will keep going further, incrementally. We have cancer, it's no joke.

  • VioletKali
    VioletKali Member Posts: 97
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    I tried an AI along with ovarian suppression because I cannot take tamoxifen since I am unable to function without my SSRI drug. I usesd it for 3 months. I was 33 years old, I woke up stiff and feeling massive pain, and 8 developed trigger finger.

    I decidesd that I would forgo anti-hormonals because I care more about quality of life than how long I will live.

    I don't want to die, but I REFUSE to live with side effects that affect quality of life. With this being said, I will also never do chemo again. I know what I will do if cancer recurs, I will have a dignified death on my own terms.

    I am currently 37 and a 5 year survivor!


  • Artista928
    Artista928 Member Posts: 1,458
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    violet. Have you tried celexa or lexapro? Along with buspar for anxiety I'm able to take Tamoxifen with it. Check with your mo. Also there is an article on this board somewhere that lists what interferes with tamoxifen and what doesn't. So there are options if you want to try tamoxifen.

  • Sara536
    Sara536 Member Posts: 5,937
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    Violet- May the Force be with you! :)