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Deciding not to take Tamoxifen

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  • Cmo65
    Cmo65 Member Posts: 5
    edited September 2015
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    I finally started tamoxifen after resisting for two months, but in the end I just don't want to go through this again so I gave in. The 1% risks compared to the 50% benefit finally convinced me, but I totally understand not taking it.

    Christine

  • BreatheDeep
    BreatheDeep Member Posts: 13
    edited September 2015
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    Hi Woods, thank you for your post. I too did the Lifemath and it said Tamoxifen would add 158 days to my life. I had a slow growing, stage 1, 1.2 cm, no node involvement, same as you, and the choice has still been so tough as I have a 10-12% chance of recurrence which Tamo would cut in half. I may go on it and see how I respond, if I feel terrible that will be enough to know this won't work for me and then I can try the other options I have been researching. I find it sad that so many women have to go on this drug because we have no idea which 5, out of 100 women, will end up with a cancer cell in their blood stream that will become untreatable. That means a large % of women on Tamo never needed it. I know we have made huge advances, but this is one I pray we find another option for. My radiologist told me that he hears this from women every single day, no one wants to go on it, but no one knows whose life it will save. Thanks again.

    Speace - Thank you also for sharing your experience, I'm so happy to hear you aren't having terrible side effects. it all helps in my decision making!!

    SassyNut - Thank you as well, its so good to hear from other women in hre that are going through this. I appreciate your comments.

  • dtad
    dtad Member Posts: 771
    edited September 2015
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    bluepearl. The problem is that most docs will not approve a lesser dose because there are no studies on it and there probably never will be! IMO its a very personal choice and one that is yours Not the docs!

  • Woods
    Woods Member Posts: 6
    edited September 2015
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    Hi, I saw my my cancer surgeon today and asked him about NOT taking tamoxifen. He said that with the size of your tumor which he said was UNDER 1cm and no node involvement and being HER2 neg that he was fine with me NOT taking Hormone Therapy. He said my risk of recurrance is very low and if quality of life is my main concern then don't take it. He also told me about many patients of his that have developed Deep Vein THrombosis and other debillitating conditions from this drug. I was on the fence and now I am OFF. He said to me that my drug doc would not agree with him but then she's a drug doc. Here in Mexico we have the Oncological Surgeon, the Chemo/drug Doctor and the RO. So three different docs. My surgeon is brilliant went to medical school at 14 years old and I trust him implicitly. I feel as though a HUGE weight is off my shoulders now. He said the only thing I need to make sure of is getting my mammograms on time and I said I may even have them every three months instead of every 6 months. Here is mexico mammograms are so cheap like $30 a pop. So so relieved...

  • ksusan
    ksusan Member Posts: 461
    edited September 2015
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    He also told me about many patients of his

    Very interesting. My MO and GYN told me it's a rare side effect that they only see infrequently.

    Here's an abstract with stats that may be useful for people:

    Cancer. 2009 Oct 1;115(19):4442-9. doi: 10.1002/cncr.24508.

    Tamoxifen treatment and risk of deep venous thrombosis and pulmonary embolism: a Danish population-based cohort study.

    Hernandez RK, Sørensen HT, Pedersen L, Jacobsen J, Lash TL.

    Abstract

    BACKGROUND:

    Tamoxifen therapy is reported to increase the risk of deep venous thrombosis and pulmonary embolism (DVT/PE). To the authors' knowledge, it is not yet known whether the risk changes with the amount of time elapsed since the initial tamoxifen prescription. This information would be valuable in identifying patients at high risk for DVT/PE.

    METHODS:

    The relation between timing of tamoxifen use and venous thromboembolism risk was examined. The study population of 16,289 women was identified from the clinical database of the Danish Breast Cancer Cooperative Group. It included women diagnosed with International Union Against Cancer (UICC) stage I or stage II estrogen receptor-positive breast cancer between 1990 and 2004 at ages 45 to 69 years. Risks, risk ratios (RRs), and crude and adjusted hazards ratios were calculated for each of the first 5 years after breast cancer surgery and then cumulatively over the next 5 years.

    RESULTS:

    The 5-year risk of DVT/PE was 1.2% for women receiving tamoxifen and 0.50% for women not receiving tamoxifen. Women treated with tamoxifen were at a higher risk for DVT/PE during the first 2 years after exposure (RR, 3.5; 95% confidence interval [95% CI], 2.1-6.0). Subsequently, their risk was not found to be substantially increased (RR, 1.5; 95% CI, 0.88-2.5). Older women taking tamoxifen appeared to be at higher risk than younger women during the first 2 years of exposure.

    CONCLUSIONS:

    The findings of the current study suggest that the first 2 years after the initiation of tamoxifen therapy may be the most crucial time for monitoring DVT/PE risk, particularly in older women.

    2009 American Cancer Society.

  • labelle
    labelle Member Posts: 134
    edited September 2015
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    I chose not to do tamoxifen or an AI for a variety of reasons. My OC could not say for sure I needed it (probably not- 80-85% chance I will never have a recurrence even w/o it), couldn't guarantee it would be effective (might or might not prevent a recurrence if I was in the 15-20% category-50/50 chance), would most likely have some bothersome side effects-ranging from pretty benign but uncomfortable hot flashes (common) to deadly blood clots, very rare, but possible. I just went with the big numbers-it won't come back and I have a life to live.

    OC did not exactly approve of my choice but considered it reasonable under the circumstances- PCP, endo and orthopedist have all been made aware of my choice and none seem to feel it is a bad one for me.

    I lost my mother to BC so I know exactly how deadly this disease can be, but she progressed to stage IV while on Tamoxifen so I know it is far from a magic bullet or an ultra effective drug - 50-50 chance of working is not IMO very impressive.

    Exercise has been shown to cut the risk of recurrence by about 47% in both women taking AND not taking tamoxifen. So there is something we can ALL safely do to help ourselves, with the only side effects being weight loss and firmer abs! I'm on that!

    But I'm still so pissed that these drugs (tamoxifen and AIs) are all they have for us. Drugs with some pretty horrific side effects and that only work about 1/2 the time are not acceptable IMO. But they are "it" so I do understand why so many women take or try to take them, but I can't make myself do it.

    It really is a very personal and difficult decision one must make by weighing the pros and cons for one's self. Unfortunately, it often seems like there is little support on here for those who choose not to take these drugs. I think we are ALL doing everything we personally can to keep the monster away, for some of us that is a pill a day, for others it is diet, exercise, supplements, whatever. For some it is all of the above, but whatever our choices, I think they should be respected.

  • Woods
    Woods Member Posts: 6
    edited September 2015
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    Somebody said to go on the Stage IV boards and read about what these women are going thru and I did. What I did see is that almost ALL of these women were on Tamoxifen or other Hormone Therapy. They all developed WORSE cancer while on these drugs. I understand that this is not ALL women BUT, I could develop the same thing with or without Tamoxifen and I am choosing quality of life especially with my really bad reaction to this drug. Its a crap shoot unfortunately. I feel so so bad for these women who did everything their doctors told them and now have even more devastation diagnosis.


  • Woods
    Woods Member Posts: 6
    edited September 2015
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  • labelle
    labelle Member Posts: 134
    edited September 2015
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    Yes, the "go to the stage IV boards" is IMO an example of not being respectful of those who choose not to take these drugs. Scare tactics are not supportive or respectful. And it is pretty silly since most women who progress started out taking tamoxifen or AI (simply because most ER+ BC patients do take one or the other, NOT because these drugs cause progression of ER+ BC). Sometimes we are told by women with TN BC that they wish they had this option, that ER+ is somehow "better" because we have the option to use hormone blockers, but unfortunately taking tamoxifen increases one's chance of getting TN BC later on.

    All of our choices pretty much suck, you just have to pick the one you are best able to deal with and try to be if not supportive, at least understanding, of those who choose differently, because all choices are IMO reasonable given our options. When the choices are bad, worse, or just plain crappy, to say one person's choice is better than another's is silly. Now if they had something that cut the chances of recurrence by an impressive amount (like surgery and I did that) or even something that just worked only 1/2 the time but had few bad side effects, I"d be there, but that isn't what we have. If we can't have a cure, we need better and more effective treatments for this disease, not the same ineffective,dicey,side effect riddled crap they've been handing out to us for years.

    End of that rant. With Pinktober right around the corner, I'm afraid there will be more!



  • Woods
    Woods Member Posts: 6
    edited September 2015
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    Does anybody know that if you decide to NOT take Tamoxifen that if you get a recurrence insurance won't pay? I heard this the other day and stopped me in my tracks. Something else to worry about...

  • loral
    loral Member Posts: 818
    edited September 2015
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    I dobt if thats true, they treat you for lung cancer if you smoke..........

  • Woods
    Woods Member Posts: 6
    edited September 2015
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    True. I hate scare tactics by docs.

  • BreatheDeep
    BreatheDeep Member Posts: 13
    edited September 2015
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    Hi Woods, regarding the IV boards and women getting a worse version of BC, I have been reading a lot about that and wondering why, if a woman has Stage 1 cancer, how it can become stage IV next. I thought this was all supposed to be so much simpler, ie surgery and get back on with life - boy was I wrong. But, as I mentioned in another post here today, it seems like too many women who already have BC get it again, and everything I am researching suggests that a depleted immune system from our surgeries, chemo, radiation... whatever anyone went through, cannot help to fight off anything else in the body effectively. There is a tremendous amount of information out there about how to keep cancer from recurring, and although I know it may not work for everyone, the information will make me much healthier than I was.

  • Iowawoman
    Iowawoman Member Posts: 2
    edited September 2015
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    I have found reading these posts tremendously helpful. I just met with my MO last week, our second meeting since the end of radiation in May. At our first, she recommended tamoxifen, but she was fine with me taking some time to think about it. Her reading of my Oncotype test results indicated that without the drug my recurrence risk would be 12%.

    This time, she was a bit more aggressive about it. She seemed a little flustered when I quoted her from before, and she pulled up my Oncotype again, proceeding to say some different things this time. But, I must say that she respected my decision not to take the pill. I feel she just wanted to make sure I understood my decision.

    Difficult choice, but right for me. And, once again, I am thankful for this spot to come for support.

    Lisa

  • atanea
    atanea Member Posts: 5
    edited September 2015
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    Hi everyone,

    Well, I'm on Tamoxifen, for two years and half now. I must say I don't have any 'visible' side effects now, nothing at all, so, I think maybe some people could give it a try before panic. By the other hand, I'm premenopaused now and after have stopped ovarian suppression (for me, that was so more difficult than tamoxifen..) I started having not so visible side effects, like uterus lining thickening (very common side effect) and ovarian cysts (they told me it's not Tamoxifen related, but I just don't buy it..), that are driving me crazy...I believe this is probably being caused by Tamoxifen not being opposed at the ovarian level. With that kind of side effects, that may cause you another cancer, I get that people may have second thoughts about Tamoxifen, but there are other options, for hormonal treatment.

    Even when I was with ovarian supression+tamoxifen and with a lot of other minor side effects like hot flashes, some bone pain, and bad mood, and insomnia, I wouldn't not even for a second give up on hormonal treatment (I'm ER+100% and PR+100%), because those wouldn't kill me, and I realized I could do a lot of things to minor those side effects, like exercising (walking 5-10 km in a day, always help me get a better sleep, and bone pain was also less), taking melatonin to sleep, taking low-dose aspirin to avoid thrombosis (I have a greater risk for thrombosis, due to other chemo pills I have to take), etc..

    To me, the numbers that matter are the odds of getting another cancer and die of it (or having another SE that kills) Tamoxifen induced vs. the odds of having BC again and die of it (for most of the people those odds are greater).

    The risk of having leukemia just after having BC (without chemo) was so so so low, so much lower than having a recurrence for BC, but guess what, I have it (leukemia)... what I mean is that we just can't think a 1% or 2% risk of recurrence it's irrelevant, it's 1 or 2 people in 100! For me, that's a lot!

    For me, it's out of the equation to stop hormonal treatment, but I'm starting to be really scared about ovarian cancer, so I'm having second thoughts about Tamoxifen, but that's because ovarian cancer kills even more than BC, I'm not posmenopause anymore (and my estradiol levels are high) I'm not that sure that Tamoxifen isn't hyper stimulating my ovaries somehow, I'm almost sure it is, I'm just hoping it's a temporary thing while my body adjust to this new premenopause state. But if I have to give up on Tamoxifen, I will go for another hormonal treatment, unfortunately in my case, I believe that will mean 'oophorectomy', and unfortunately to me, that is so more worst than Tamoxifen side effects, still I'm even more scared of having ovarian cancer or breast cancer again.

    I think this decisions are very hard, most of the times, there is no win-win here.




  • Iowawoman
    Iowawoman Member Posts: 2
    edited April 2016
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    Tough choices, Atanea. Keeping you in my thoughts.

  • gindugirl
    gindugirl Member Posts: 9
    edited April 2016
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    I just wanted to share my story. I declined Tamoxifen when I was first dx. I was stage 1, low oncotype, no nodes. I'm super healthy, organic, plant based diet, exercise 4-5 times a week, very fit. I just got a recurrence in my axilla and it's 100% ER+. Would I have gotten this if I'd taken Tam?? I'll never know for sure. But it probably would've taken longer to come back. Who knows. I'm trying not to live in regret. I'm a super complementary and alternative, holistic advocate. I hate drugs of all kinds. I had identical twins vaginally and without any drugs and I won't even take advil after my surgeries, that's how much I loathe drugs. I'm kinda nuts about it. And here I am now and I HAVE to take the hormonals. Probably Lupron+Aromasin. I'm so bummed about it, but I'll always wonder if I'd take the damn tamoxifen in the first place would I be dealing with this now. Sigh.... The choice is personal and you have to be able to not look back. I'm trying to accept my decision and keep moving forward.

  • Nibblersmom
    Nibblersmom Member Posts: 1
    edited April 2016
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    I'm glad you posted this. I am 35 and after all the confusion, I am about four months out of radiation and tamoxafin was highly recomended for 10 yrs. I'm very concerned about the side effect mine was the same 5-10% reoccurance so I opted out. I'm in my head all the time unsure if I made the right decisio

  • atanea
    atanea Member Posts: 5
    edited May 2016
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    Just to keep an update about my Tamoxifen related issues..it's my third year of Tamoxifen. The complains I had before (big cyst and uterus lining thickening) went away in the last months.I sometimes get some dryness and that's all. I have my normal periods now (I'm 39), and it seems my body adjusted. The SE I have now with Tamoxifen are lower than the SE I have with taking 1 daily 100 mg aspirin. Of course, not everyone have that luck.

    Sooner or later I will have the problem of choosing 5y or 10y of Tamoxifen too. I believe the major risks with Tamoxifen are trombolic events and endometrium cancer. But, to most of the people, those two risks are lower than the recurrence risk. And endometrium cancer it's much less danger than mets, if found at an initial stage the endometrium cancer prognostic is very good. And it seems the risk for endometrium cancer will be even lower if we keep getting often US to watch endometrium, and also, if we still have our period that risk will probably be even much lower (at least that's what gyn. have told me).

    We have to keep something in mind. Mets kill. The most SE with Tamoxifen don't, and with the one's that do, usually the risk is much lower thatn having recurrence. Just not sure how higher is the risk with 10y Tamoxifen vs only 5y.

    It's easy to look back and blame ourselfs with those decisions, but I guess we all do the best we can with the information we have.

    Would I have had leukemia if I didn't had tumorectomy+rads and opt for a full mastectomy instead, with no rads? (Well, I did opt for that, but doc refused to do a full mastectomy and I refused to have only a partial mastectomy). Who knows...we just have to let it go...and keep the fight at the present time, yes...more easy to say than do, but we have to keep trying, we have to decide to not let cancer get away with destroying our mind, also...


  • Neko
    Neko Member Posts: 1
    edited October 2016
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    Anyone still following this? I'm really leaning towards NOT taking Tamoxifen. Would love to have someone to talk to about this!

  • KathyL624
    KathyL624 Member Posts: 47
    edited October 2016
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    Where have people heard that tamoxifen only works 50 percent of the time? And that taking it increases your risk if a triple negative cancer later on? My MO had been adamant that tamoxifen us my greatest weapon in this

  • pupmom
    pupmom Member Posts: 1,032
    edited October 2016
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    Kathy, your MO is correct. Lots of misinformation on this board. Scared

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited October 2016
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    There is misinformation on many of the boards, NOT just this board. One must do one's own research, AND make one's own decision. These are all hard decisions each and every one of us must make. It helps when we can find support here regardless of what we decide! I am not on meds and am 100% at peace with that decision!! Hugs to all who are pondering their care. Choose what is best for you - It is not a one size fits all disease

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2016
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    Yes, there is a lot of misinformation on this board. But in this case, Kathy, what you have heard about Tamoxifen is pretty much correct. However your MO is also correct that Tamoxifen is your greatest weapon.

    It is true that Tamoxifen is approximately 50% effective. In other words, it has been shown to reduce recurrence rates for early stage women by ~50%. And it decreases mortality by about 1/3rd.

    Long Term Data from 20 Trials Confirm Tamoxifen's Long-Term Benefit https://www.cancer.gov/types/breast/research/tamox...

    There also has been one significant study that found that Tamoxifen might increase the risk of a future ER- cancer. It's important to note that Tamoxifen also significantly reduces the risk of a second ER+ cancer. Therefore the conclusion of this study was that Tamoxifen remains an important and effective treatment for ER+ women and should continue to be recommended to patients.

    Tamoxifen May Increase Risk of ER-negative Second Breast Cancer http://news.cancerconnect.com/tamoxifen-increase-r...

    What it comes down to is that no treatment is 100% effective and there is nothing any of us can do to reduce our recurrence risk to zero. And every treatment comes with risks. These studies are simply telling us the specifics of these statements as it relates to Tamoxifen.

  • Iamasurvivor
    Iamasurvivor Member Posts: 2
    edited April 2017
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    I am 48 and just had a lumpectomy and radiation. I do not want to take Tamoxifen. I am stage 2 ER positive. I do not understand why Tamoxifen is the only medication out there for premenopausal women. It is toxic and I cannot take it

  • Iamasurvivor
    Iamasurvivor Member Posts: 2
    edited April 2017
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    I am 48 had a lumpectomy and radiation within the last 4 months. Now, I am told I have to take the dreaded Tamoxifen. I do not want to take it

  • moderators
    moderators Posts: 8,280
    edited April 2017
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    Dear Iamasurvivor, Welcome to the community. We are sorry about your diagnosis but glad that you reached out to our members. This particular thread has not seen recent activity. You may want to start a new topic and pose some questions to others as to what you are looking for in the way of information and experience. Let us know if you need help navigation around here. Here is a link to our main site with pages of information about Tamoxifen. Perhaps something in here might help. The Mods

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited April 2017
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    I am sorry you are going through this. Good luck with your decision. I was there 7 years ago, 52, years old, lumpectomy and radiation, no chemo. I was very reluctant to take Tamoxifen, but did for 5 years, with no side effects that I am aware of. I am there again, same breast. Most likely a new cancer rather than a recurrence. This time chemo, and bi-lateral (my choice, surgeon strongly felt there was no reason to remove a healthy breast). I am now facing the decision on taking an aromatase inhibitor. Strongly recommended by several DRs. Side effects scary, since post menopausal woman already at risk for bone thinning and joint aches. Being told that there are drugs to help counter is not comforting. But presumably 30% have lowered risk of recurrence if taken for estrogen positive breast cancer. My DR is very easy to talk to and receptive to my questions/concerns. I see her later this month, but have not started taking it yet. You might want to check some of the other forums for experiences others have.

  • mizjan
    mizjan Member Posts: 1
    edited July 2017
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    Hello everyone. Was so happy to find this discussion as I finished radiation a couple weeks ago. Was supposed to begin Tamoxifen, but had a bit of radiation dermatitis, so MO said I could put it off a couple weeks. And, after much research and thought, reading the posts here, doing the lifemath treatment outcome calculator, I am feeling way better about my decision not to take the hormone therapy. I was not so much afraid of hot flash side effects as the possibility of the blood clots or stroke. I feel that, at my age, 67, I do not want to live in fear of instant debilitation via a stroke as I am a very active person (and a worrier). If I was 20 years younger, I might make a different choice. But for me, right now, quality of life is winning over quantity.

    My thanks to Tgtg and BreatheDeep for your thoughtful and meaningful posts.

  • Variable
    Variable Member Posts: 28
    edited July 2017
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    I was supposed to start Tomoxifen in December, following lumpectomy and whole breast radiation, but have yet to take that first pill. I am scheduled for a total hysterectomy with ovary removal and cannot confidently commit to that either. I would really love a general contractor for my health care to help me navigate this process. These decisions are so hard and there are no guarantees for any of these treatments!