Refusing hormone therapy

Crosbyfan1987 Member Posts: 5

has anyone here refused to take either their Tamoxifen or AI?



  • pi-xi
    pi-xi Member Posts: 177

    I wanted to avoid tamoxifen for DCIS so I had a BMX for which the pathology showed invasive cancer and now I've been taking the drug for nearly two years.
  • WC3
    WC3 Member Posts: 658

    What are your concerns about the hormone therapy?

  • dtad
    dtad Member Posts: 771

    I refused anti hormone therapy from the start. I'm over 3 years NED. So far so good! Its a very personal decision and I'm not advocating it for everyone. Please let me know if you want more details. Good luck to all...

  • Crosbyfan1987
    Crosbyfan1987 Member Posts: 5

    WC3 I am concerned about the side effects.

    Dtad yes I would like more details thanks.

  • dtad
    dtad Member Posts: 771

    Hi everyone...To start I had a debilitating autoimmune disease at the time of my diagnosis. My QOL has been poor for over 15 years. I was just not willing to risk it getting worse. I also did not like the fact that hormone levels were not checked before, during and after anti hormone therapy. The only way to know if it was working was to wait and see if you have a recurrence! That just seems crazy to me. So I did tons of research and decided to try to lower my estrogen levels naturally. I lost 30 pounds, exercise daily and take several supplements. I take DIM in leu of an aromatase inhibitor. I also take melatonin, baby aspirin, mushroom extract and berberine to regulate my blood sugar. So far this is working for me. Good luck to all navigating this complicated disease.

  • Meal1980
    Meal1980 Member Posts: 3


  • dtad
    dtad Member Posts: 771

    Meal1980...just curious what you mean by following

  • Meal1980
    Meal1980 Member Posts: 3

    Can't find DIM in the abbreviation explainer... help?

  • dtad
    dtad Member Posts: 771

    DIM is a group of crucerifous vegetables. The theory is that it lowers the bad estrogen that causes breast cancer but not the good estrogen that we need for every other organ in our bodies. Hope that helps

  • Meal1980
    Meal1980 Member Posts: 3

    just wanted to post that I am reading along...that way I will get an email when someone replies.

    lol.. or I thought thats how it works.

  • Crosbyfan1987
    Crosbyfan1987 Member Posts: 5

    Yes I heard about that.

  • kaylie57410
    kaylie57410 Member Posts: 117

    hi to all-felt compelled to respond here-we all want to avoid medication side effects when the downside outweighs the good effect=so much of the theories of supplements,herbs,dietary guidelines are only theories-=unproven by scientific facts to back what are often false claims.Much of what you read on the internet is just not true-as to alternative treatments which people elect to use INSTEAD of proven medical treatments=as opposed to complementary treatments that help cope/feel better overall with this disease and treatments-but dont treat the actual cancer.

    Dont make the life threatening mistake of thinking you know more than your doctors and careteam about how to successfully treat your breast cancer---wake up call--you dont!They are experts at the top of their game and are trying to save us!

    dtad=am glad you are doing well-and you certainly can have your levels tested-is what pre menopausal women have done to find out when menopause is occuring=there is not good estrogen and bad estrogen affecting different organs-is just estrogen.Good for you that you are 3 years out with NED---yet---that is the key word here--yet---is well shown that recurrence is at highest risk in the first 3 of 5 years,and there is a 40%plus reduction in this risk with a hormone blocker-you had 2 kinds of cancer of intermediate grade as to aggressiveness with ILC being known to put you at higher risk for recurrence. Mastectomy has not been shown to eliminate recurrence risk any better than lumpectomy with radiation

    I am a long time RN ,skilled at seeking out academic research==dx'd a year ago with stage 2 early breast cancer=had lumpectomy,radiation,4 rounds chemo-breezed thru that and saved my hair with cold capping-=yeah!!-and now entering my 6 month of letrozole with minimal side effects-some sleep disturbances,achy feet and knees first thing in am-resolves with advil and stretching exercises,and mild dysparunia-easily dealt with with non water based lubricants

    We are all individuals with our own circumstances,yet ladies--do trust your doctors advice -we are in a fight for our lives over the long haul-give yourself the best possible odds at a long life ahead=hugs to all,Kaylie

  • legomaster225
    legomaster225 Member Posts: 356

    Crosbyfan, would you consider taking the tamoxifen or an AI and see if you have side effects? I did not have experience with an AI (yet) but the onlyside effect I have from tamoxifen is possibly short sleep cycles. I have never been a good sleeper and always a night owl. Really nothing else has bothered me. Many women do have side effects, many women do not. I don't think those without side effects post as much either out of respect/guilt for those who do. If your concern is just side effects maybe you could try it and see how your body reacts. I know I was terrified to take tamoxifen after reading some of the posts on this board but really the side effects have not materialized for me. At least not yet. I will be switching to an AI at the end of the year based on my menopause bloodwork. The saga continues but I am happy to have a proven medication to help my odds. Everyone had to make their own decisions though. Best of luck to you💕

  • dtad
    dtad Member Posts: 771

    Kaylie57410....I found your post very offensive. I'm also a RN. Who are you to judge me? You have no idea what my individual circumstances are and what lead to my decisions. Scare tactics are completely unnecessary. I pretty much disagree with everything you said. Lets please try to be respectful of others decisions. We are here to support each other. You do you and I'll do me!

  • kaylie57410
    kaylie57410 Member Posts: 117

    not judging you in any way- just expressing concern that others trust and listen to their doctors-who have the expertise to guide us in an informed ,expert manner based on each of our situtations for the best possible outcomes according to scientific evidence and clinically proven treatment methods. No scare tactics -am stating the facts and known statistics that are widely available to seek out and acquaint oneself with--Am sorry if what I have stated scared you-- but it is the reality of having had breast cancer-and the uncertain future each of us is facing==best to you and I wish you good luck as you move forward,Kaylie

  • edwards750
    edwards750 Member Posts: 1,568

    Kaylie -frankly I was afraid not to go the conventional route. I decided it was like playing Russian roulette with my life but that’s me.

    I live in Collierville, a township outside Memphis. As you probably know St. Jude is located in Memphis. I remember when Steve Jobs was DX with cancer and decided to go the other direction. His family begged him to seek treatment. When he finally decided to do so at St. Jude it was too late. That has always haunted me for some reason.

    BC isn’t a one size, fits all disease and it is a personal choice as to surgery and treatment. We all have to live with our decisions and the consequences from those decisions.


  • Jadedjo
    Jadedjo Member Posts: 30

    Kaylie- I'm having some issues with what you said. Like Edwards750 stated it's not one size fits all. Not everybody is so positively  gung ho like you are about doctors and their opinions.

    the trust the doctors bit?


    The same doctors that "forgot"I was supposed to be on a medication for less then a year and left me on them for five years.which led to a lifetime issue.

    No I won't trust them.

    The same doctors who told me I was just  being a hypochondriac and one who literally said "if you were a horse we would have taken you out back of the barn and shot you by now"when in reality I was suffering the nastier effects of PCOS. At 17. Yep I was a teenager when I was told that.Diagnosed myself years later .tests later backed me up.


    Trust Doctors who said two mild issues were because I was fat when in reality it had nothing to do with my weight but the delay in being diagnosed was MONTHS for one and years the other. Diagnosed myself.tests later backed me up.


    Trust doctors who told me to just give it time and wouldn't even listen(or even believe me though i was shrinking in front of them every time  I went 3 years ago when I couldn't eat solid food for close to four months and could barely swallow fluids though thankfully enough for about 500 calories a day and dropped 60 pounds in less then 70 days because of that which ya I could afford to lose but ended a year later with me getting a blood transfusion due to being in the edge of critical anemia because my body  was having a hard time recovering.been deteriorating the past year with issue similar to what caused this making me fear sleep at night.doc said he had no clue. Was never given any treatment for not eating EVER even though by month two I looked like walking death and totally could have used an iv vitamin boost.apaprantly cause I was fat I could "afford"to lose the weight. I was actually told that by a doctor.

    Guess who just diagnosed them self while searching about side effects from chemo.acid regurgitation.has ruined my life over a year. Doc said he had no clue what it was. Description found ON GOOGLE fit everything I told him more then once  to a T.

    But I diagnosed myself.

    No I won't trust them. I never will again. 

    So ya maybe in your experience you have reason to trust doctors and your one of the lucky ones but not all of us have that reason. Nary a one has diagnosed me except for the breast cancer and that is only because I argued to get the reflux checked out deeper and the ct accidnetly caught couldn't really  be felt at the time. 

    I have diagnosed myself then had them send me for tests to confirm for the majority of my illnesses.

    So you can guarantee I am going to question EVERYTHING they tell me and I will make choices I can  live with from it because I know they don't give a crap about me. For them I'm just one more number in the statistic. A way to improve their success numbers if it works. Success means more money and prestige  as they get more referrals. So they will go overboard to get good numbers.

    For this reason your "cheerleader for doctors and always follow their decisions" rubs me the wrong way the way it kinda did dtad

    I know you probably don't mean to but when your rah rahing doctors try to remember not everybody has good experiences with them and thus are less likely to trust anything they say.

    Blessed be.

  • Amica
    Amica Member Posts: 237

    Dear JadedJo

    I hear you. Doctors do miss a lot and they misdiagnosis. They discount valid symptoms and write them off as all in your head, or you're being a hypochondriac. BOTH of my breast cancer occurrences were discounted and not taken seriously. I found my first lump in my 30s, my doc said I was too young to have breast cancer and that caused a delay of over a year. And my recent reoccurrence was written off by my doctor and not taken seriously, she blithely said "no one gets a reoccurrence after 20 years.") Well I guess she was ignorant of the facts. It turned out to be metastatic breast cancer.

    So, I question everything they do, and am skeptical and try so hard to advocate for myself, even though as a patient you are somewhat at their mercy. The medical system should be fighting for us, instead of us having to fight for care, but that is how it feels to me. It is exhausting having to fight for decent medical care.

    Power to you!



  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    This is an endless subject brought up here. The recommendation is for endocrine therapy for hormone positive patients. That has been scientifically proven to reduce the risk of recurrence by almost half.

    However - there are no guarantees. We all know patients who have done everything possible and still had a recurrence. As well as some who have gone against medical advice and done well. My position is that we are all individuals and really have to make the choice that's best for us.

    If I explain what I've done and why, that doesn't mean I'm trying to make others follow me. Some do very well on these medications and others do not. I had excruciating leg cramps while on Tamoxifen - so much so that I slept terribly and hobbled around every day, despite trying every possible remedy. I also had the ridiculous vaginal discharge constantly. But worst of all - I felt like something was happening to me mentally and emotionally. I couldn't think normally and couldn't cope.

    The rational part of me understands that other things could have contributed to the brain problems - lack of sleep being one. But I felt that things continuing to worsen over 3 months was enough for me. And still - part of me realizes that Tamoxifen could make the difference of whether or not the cancer returns.

    I was triple positive but had a great chemo response. I've had a BMX. I feel like my risk should be pretty small. But it will never be zero. And I'm the person that will beat myself up over a recurrence if I don't do what is recommended. Sometimes I wish I was triple negative and didn't have to do any more. And many of those patients wish they could do more, wish they had these drugs.

    So I intend to try again, but this time I'm starting at 5 mg and slowly working my way up. I don't have much faith in this, but I feel I have to try. I've read some promising research on drastically lower doses so if 20 mg doesn't work but 15 or 10 or 5 does then I'll do that. And if all of it is crap and I start feeling horrible again - well, at least I tried.

  • dtad
    dtad Member Posts: 771

    Hi everyone. I didn't want to be a Debbie downer but I've also had horrible experiences with docs and conventional medicine. They certainly are not infallible and thats why I took offense to Kaylie's post. Ive experienced life threatening side effects from drugs. We all have different experiences that influence our decisions. We have to be respectful of that. Good luck to all...

  • viewfinder
    viewfinder Member Posts: 199

    "Can't find DIM in the abbreviation explainer... help?"

    LOL Meal1980, I'm quite new to this forum and sometimes I feel like I'm reading a foreign language with all the abbreviations (oops, I just used one). Loopy

  • dtad
    dtad Member Posts: 771

    DIM is a supplement made of a group of crucerifous vegetables. Its suppose to lower your estrogen more naturally. Ive been taking it in leu of an aromatase inhibitor from the start. I'm 3 plus years NED. It was the right decision for me, but a very personal one. Good luck to all...

  • Jadedjo
    Jadedjo Member Posts: 30


    Tell me about it,especially in Canada. It's pretty much do everything we say and don't question it. As for cancer returning it can happen to anyone no matter how long since they have beat it the first time around . I know that as a layperson so how did a medical professional not know that? You are right about them. If anybody knows our bodies,it's us and they don't seem to understand that when we say something is wrong then there is a good chance something is  wrong.the cdn medical system really needs to work on that. I deeply hope you start getting the care you need and deserve without having to fight for it every day.your focus should be on healing not bureaucracy and it's time they realize that.


    Thanks for the clarification for DIM,I was wondering myself. And your right everybody's experience is different.something I'm going to consider.


    If I ever have to take something I try to start small myself and work up. You are planning on doing what I would probably do. Please,if you are comfortable with it,share your experience once your one your way as for people like me knowing one can work their way up rather then just jump into the deep end from day one could possibly ease some of the worry.Which is the issue I have with all the medications used After treatment.

    Blessed be to all.

  • viewfinder
    viewfinder Member Posts: 199

    kaylie57410, I personally found your post helpful. Sometimes we need a jolt to put our perspective in balance.

    I was diagnosed with breast cancer in April, recently had a lumpectomy and awaiting visits with an oncologist to go over my options.

    I have a friend who was a top-notch nurse (cardiac and emergency room). About 15 years ago, she got cancer and had a full mastectomy, went through the radiation, chemo and took tamoxifen. At the same time, one of her fellow nurses got the same type of cancer. My friend's doctor urged her to have aggressive treatment and she followed the advice. Her fellow nurse opted for less aggressive treatment. She died a few years later, my friend is still alive and kicking.

    Cancer is a very serious disease and all options should be weighed and understood. For those who have side effects, a possible lower quality of life is better than no life at all. Countless people with breast cancer have survived because of treatment.

    Unfortunately, people in the medical profession are human and, like all of us, make mistakes. Yes, we need to have a healthy dose of skepticism and advocate for ourselves, get second opinions when necessary, but give very serious weight to our doctor's advice.

  • zeldabug
    zeldabug Member Posts: 4

    Hello Everyone

    I had DCIS. I had a mastectomy in April (4.5 months ago). I met with the medical oncologist last month. They are recommending aromatase inhibitors.

    For more than 12 years I have been dealing with depression and ptsd. Apparently aromatase inhibitors can cause depression. At this point I can't imagine starting a medication that may cause depression........ I asked if there were alternatives. I was told "no. that's it" I asked what happens to women who cant tolerate the side effects (whether it is achey muscles depression or whatever)...again I was told "there is nothing else. that's it. you are between a rock and a hard place". I told the onc I would think about it. They seemed very suprized/annoyed.

    Im annoyed and fed up too. Im also VERY annoyed that the literature refers to people who can't tolerate the side effects of hormone therapy as "non compliant". Non compliant women. Why not "unbearable side effects"

    Anyway, I could go on and on.

    If anyone has any ideas or thoughts, id love to hear them.


  • carmstr835
    carmstr835 Member Posts: 147

    I took arimidex as neoadjuvant therapy for 3 months prior to my chemo and surgery. It raised my Blood pressure and cholesterol. I was put on BP medications, but opted out of cholesterol medication. When the chemo began in May, I stopped the arimidex with the understanding I would take tamoxifen after the chemo. When I finished my chemo I decided against the tamoxifen for fear of the cognitive decline I was told about by my oncologist. He was not happy and still believes I should be on an anti-hormonal drug. I am only 1 year post diagnosis and my concern is keeping my cognition as long as I can. I have chemo brain from the chemo drugs that hopefully will improve, but my concern is tamoxifen is for 10 years, I don't want to live with this chemo brain for another 10 years. If my cancer does metastasize and it is hormone + still, then I will take an anti hormone drug, because I do know it works on my cancer. Then it will be to extend my life, no longer a cure. The pathology showed marked improvement had occured after my surgery with just a couple weeks of arimidex. I guess it is your choice as to the quality of life you can live with. I need to be able to think.

  • Yaniza
    Yaniza Member Posts: 83

    I opted not to take tamoxifen. After a chat with the oncologist I decided that the side effects... including an increased risk of uterine cancer were not worth it.

    I opted for a bilateral mastectomy although I was only diagnosed cancer in one breast. I had no chemo and no radiation because it was a bilateral mastectomy .My cancer was estrogen receptive.

  • Yaniza
    Yaniza Member Posts: 83

    I should say also that my margins and my lymph nodes were clear. And I'm not sure how I would have felt if the news had have been worse... perhaps I would have appreciated more medical interference.

  • kaylie57410
    kaylie57410 Member Posts: 117

    Zelda bug==yes,aromatase inhibitors can have side effects as can many medications-but they affect everyone differently--I have been on letrozole for 6 months with minimal side effects--fatigue and achy feet/knees in the morning that clear with advil and moving around--thats it-very tolerable--remember the hormone blockers cut your recurrence risk in half-and as stage 2-you are at higher risk for recurrence than some--if you don,t do all you can to cut the risk down and then have that recurrence--how depressed will you be then???.You have had surgery to rid yourself of this dz, please dont backtrack now---remember you can always stop the blockers down the road at any time-but give yourself the best possible shot at a long life ahead--really--Kaylie

  • kaylie57410
    kaylie57410 Member Posts: 117

    ,Zeldabug-- oops=misread your dx situation-sorry-I see you had DCIS, not stage 2-but advice the same--best to you,K