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I don't want to take Tamoxifen. Anyone else out there?

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Hi Everyone,

I am new to this website and the boards.  I was just diagnosed on April 7th with Stage 1B breast cancer. I opted for a double mx with NS/SS diep flap reconstruction only 2 weeks later.  I'm only days out of surgery and doing well.  The tumor ended up being only 1cm and they found more precancerous DCIS in the right breast and none in the left & clean lymph nodes. ER+PR+/HER- I know the med onc docs are all going to recommend Tamoxifen.  But I'm only 40 and I am not emotionally able to reconcile the idea of the drug effects vs the actual benefits in someone with my stage of cancer.  I am so torn. The doctor says it would decrease the recurrence chances by 50% (from like 5-10%) but I asked if there was a chart for those who take no hormones at all and she said there was no data.  Is there anyone else out there who went for an aggressive surgery and opted out of hormone therapy? I feel so sad and have not had the time to even process this emotionally.  My husband doesn't really understand why I'd be sad since we already have 2 healthy kids and he says my health is more important than the menopausal side effects.  Can anyone out there relate?  It is a lot to know that I may never have kids again and that I may soon lose my interest in sex and all the other effects of menopause.  Has anyone else young-ish/premenopausal refused? 

Thanks for reading this.

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Comments

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
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    I'm 46 and had chemo pause. Now on tamoxifen. No sexual side effects except some dryness on the outside. But all skin drier. I mainly crave sweets. 

    You have been so strong and brave. Lots of women are afraid to take it. You have to do whats right for you. Talk it over. I'm not sure of the consequences if you start it and then decide to not take it anymore. 

    Good luck. 

  • sueshane
    sueshane Member Posts: 68
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    I have been on tamoxifen for 2 1/2 years.  I have gained  weight not to mention other side effects.   I would love to go off it but am scared with the consequences  MY MO says I don't have a choice-  I need to remain on it.  You know the new recommendation is to take it for 10 years.  That is never going to be my course.  After 5 years,  I am DONE! 

    I can totally relate to your feelings.  Hang in there. 

  • Lojo
    Lojo Member Posts: 38
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    I'm on tamox now for about 2 months and haven't really noticed much other than occasional warm flushes (only 1 legit hot flash) and periods spaced further apart. My doctor (ob/gyn) is a year or two older than me and has been on tamox for 3 yrs and said that the hot flashes are really the only SE for her and she's still getting regular periods. For me, no weight gain (a little loss actually, but that might be cutting way back on dairy). Obviously some people have more significant SEs, but those are the ones posting. You don't hear about the people who've had little trouble. The reduction in recurrence chances sold it for me. If you get unbearable side effects you can just stop-- in a way you can't with rads or chemo. good luc

  • Oncearunneralwaysarunner
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    I'm 32 and started tamoxifen a month ago. I'll admit that I was not looking forward to starting given everything we hear about the side effects and I can relate to how you are feeling right now. I decided to start taking it and told myself that if the side effects started to impact my quality of life I would consider stopping it. I'm happy to report that I have minimal side effects so far. Nothing that really interferes with life, a couple of hot flashes at night and a little bit of weight loss (I have not changed my eating habits but I'm down the pounds). 

    In my case going for aggressive surgery would not have changed my course of treatment since I had lymph node involvement, so I can't speak to that effect. At the end of the day you have to make the decision that you feel is right for you and your family. I just wanted to share how I made my decision to start this drug in case it helps you make your decision. 

  • DawnCT
    DawnCT Member Posts: 47
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    GowanusGal- I am older than you - 51 when diagnosed but am premenopausal.   I was really stressed out about taking Tamoxifen.   Finally,  I decided I would give it a try and that if the side effects were bad,  particularly weight gain and sexual issues that I would not say on the drug.   I just started my 3rd month and so far,  I have few side effects. It has not been disruptive to my life.  I have even,  with the help of exercise, lost a few lbs.   I still have the attitude that if unbearable side effects develop,  I will discontinue taking it.  Good luck with your decision.   Tamoxifen is really a miracle drug and may save your life.   

  • GowanusGal
    GowanusGal Member Posts: 25
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    Thank you ladies so much.  That is so helpful.  I'm going to speak further with the medical oncologists and report back with the results.  

    :)

  • pattyiniowa
    pattyiniowa Member Posts: 4
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    What a pain dealing with the whole cancer thing is! I was diagnosed in March of 2012 with stage 3 invasive ductal carcinoma in the right breast and had a partial mastectomy and the removal of 12 lymp nodes. My oncologist wanted me on Tamoxifin but when I read the side effects and saw where it "has been known to cause cancer in the ovaries" I told her absolutely not. I already went thru cancer once, I was not going to risk it a second time! I was put on Letrozole. It gave me terrible back pains, then I was put on Anastrozole, same thing. Finally she put me on exemestane and I was walking bent over from the pain! As of April 1, I stopped taking the estrogen blockers and went for something natural. I researched on line and saw where flax seed is a major big fighter of breast cancer. I bought it at Wal Mart and sprinkle it on my cereal and put it in muffins, etc. I also am taking Indole 3 carbinol. Researchers at the Univ of Berkley found it to be as effective as Tamoxifin. It killed 90% of the breast cancer cells when injected with the Indole 3. It's a pill with the crustaceous veggies like brussel sprouts, broccoli, kale, etc. which are known killers of cancer cells. I don't  like those veggies so opt for pill form. It's all about the quality of life for  me. If I am in such pain I can't stand or do my work, I'm not taking it. We must all make our own decisions and go with what we think will keep us cancer free. I have come to the conclusion most oncologists can only see the traditional way of treating cancer....chemo, radiation, five year pill. I'm choosing to go the natural route and hope I keep cancer from my front door! Good luck to all my fellow breast cancer survivors! 

  • corky60
    corky60 Member Posts: 453
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    pattyiniowa, did you ask your medical oncologist how often tamoxifen causes cancer in the ovaries?  Why not try tamoxifen and see if the side effects are as drastic as the aromatase inhibitors?  There are ladies on these boards who went the natural route and ended up at Stage 4.  Now they have to take a hormone blocker.  I understand your hesitancy but you might want to give it more thought.  Yes, in the end we each have to live with our decision.  Wishing you all the best.  corky60

  • pattyiniowa
    pattyiniowa Member Posts: 4
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    I just can't  bring myself mentally to go the tamoxifin route knowing it has caused cancer. What's the difference between the aromatase inhibitors and hormone blocker? Oh to just have a cure period for cancer!!

     


     

  • pattyiniowa
    pattyiniowa Member Posts: 4
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    Has anyone seen the Rick Simpson video on line with his marijuana cure for cancer? I have seen Dr. Gupka or Gupta, whatever his name is, interview the Denver brothers who are now growing medical marijuana with fabulous results for those with cancer. Speaking for myself, I'm open to alternative cures.  

  • corky60
    corky60 Member Posts: 453
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    Aromatase inhibitors and tamoxifen are all hormone blockers.  They just work differently.  Tamoxifen acts a weak estrogen to the uterus and bones but not the breasts.  The AIs don't act as weak estrogen at all.

  • Chiclet92
    Chiclet92 Member Posts: 2
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    Also, you have only recently diagnosed. This is a lot to process and think about. I feel for you. I was diagnosed 6 months ago so I've had time to read (too much).  I am supposed to start tamoxifen soon too. I don't want to either.  Really though, we won't know how it effects us unless we give it a chance. I've already gone into "chemo pause" and quite frankly I do not miss getting my period at all!!!  I get some hot flashes at night but it's not so bad.  I hope you can talk it through with your doc. Good luck and be well!  

  • edwards750
    edwards750 Member Posts: 1,568
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    I started out with Arimidex 2 years ago but since it attacks the bones my Oncologist switched me to Tamoxifen. I have osteoporosis. Since I have been on Tamoxifen my bones have gotten a lot stronger and I am out of the danger zone with osteoporosis so its at least good for that. I definitely have the SEs...weight gain, lack of concentration, hot flashes, etc.  all of which are manageable. Not happy about them but they can be managed. For me I was afraid NOT to take it. My recurrence is 8% with being on Tamoxifen for 5 years. My Oncologist said I wont be taking it for 10 years. It is an individual decision but be sure whatever you decide you don't second guess yourself or look back. There are women who elected not to take it and wish they had. Don't be one of them. Diane

  • besa
    besa Member Posts: 283
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    I don't understand why your oncologist is not giving you hard numbers when it comes to the 10 year probability of distal recurrence with and without tamoxifen.   You might consider getting a 2nd opinion to get the information you want. (I was given this information when I was diagnosed.)  Adjuvant online (an predictive computer program used by oncologists) and the oncotype dx test (used with ER positive bc) both give distal recurrence statistics.  Generally with ER positive bc, tamoxifen cuts the chance of distal recurrence (metastatic bc) by about 50% But - to make a decision like this it is important to know what your specific starting number is (without tamoxifen).   A mastectomy cuts your chance of a local recurrence or a new primary in the same breast - but it does not protect you from metastatic disease. 

    I took tamoxifen for 5 years following a IDC diagnosis, mastectomy and DIEP reconstruction - starting in my early 50s (still premenopausal) with almost no negative side effects.  I lost weight on the drug, had an occasional leg cramp  (but I did have a one time endometrial polyp which did need to be dealt with.)  As DawnCt said, you do have the option of starting on tamoxifen and if you are unhappy with the side effects you can always stop.

    (My understanding is that tamoxifen is associated with an increased incidence of uterine cancer (not ovarian cancer) but generally the overall incidence of uterine cancer that has been reported is low (4% in tamoxifen group  vs 1% in control group).  In the study below the increased incidence was mostly linked to women over 55 - see Lancet 2011:378 (0793):771, Davies,c. et al)

  • vlnrph
    vlnrph Member Posts: 487
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    Besa is right about the endometrial/uterine cancer risk with tamoxifen. Ovarian is a much more sneaky, therefore difficult to diagnose & deadly disease: Patty in Iowa should check back with her oncologist to make sure she understood correctly. Healthy diet is great but tumor cells are complex and can mutate, becoming resistant to even our best therapies, natural or synthetic.

    OP Gowanusgal has been through an extreme situation in a very short time. It is hard to evaluate all the information out there and apply it to one's unique case. Be sure to get your doctor's best advice, maybe a second opinion if you still have questions. 

    I'm not surprised there would be sadness regarding these decisions. Depression is not unusual either. Help is available for that so don't hesitate to ask about referral to a social worker or oncology nurse trained to assist families going through these issues.

    I was somewhat older and perimenopausal when starting estrogen receptor blockade. Had minimal side effects and doing fine now on an AI. 

  • GowanusGal
    GowanusGal Member Posts: 25
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    Hi everyone, It really has been so fast of a "trip" -- I've not had a chance to process anything (I mean it's been a month from hell!). Thank you so much for all this info. I like the idea of natural therapies, but I will just have to wait until I get the result of my oncatype in a week or so.  In the meantime, I've been looking down at the girls in their bandages and wondering when I will be able to look at myself without crying.  I've been refusing to look when the nurse comes to change my dressings because I am terrified of seeing what is there. Is there another set of threads about DIEP flaps?  I wonder if they will ever feel and look normal-ish.  I try to be cheery when my friends are around but I do feel very sad about it all despite the great doctors and results and prognosis. Sigh.

    Thanks for your responses.  They are very very helpful.  

  • blanviper
    blanviper Member Posts: 7
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    GowanusGal - So sorry you are going through all this. I was 46 when diagnosed and did begin taking Tamoxifen. You can see my cancer particulars in my sign off. Sounds like we may be similar. I have a friend who went through a very similar BC experience and had very similar stats as me who was diagnosed at 40, same as you. She is on Tamoxifen with very few side effects - just some warm flushes which she says are like a 'glow and maybe a bit more of a tendency toward fatigue by end of day. Going in, I really was expecting a similar experience to the tamoxifen based on her experience. I had decided not to read all the negative press on these forums and go into it openminded. Unfortunately, the side effects were terrible for me. The 20+ hot flashes a day (drenching sweat), night sweats, chronic fatigue and insomnia, severe leg cramps, nausea and worst of all, the mental fog, were brutal. The mental fog affected my ability to be creative and do my job. I ended up quitting after 18 months but feel that I did at least give it enough time to decide whether it was working for me. My onc is ok with the decision because my risk is relatively low. 

    So you can see that two women with almost identical diagnoses can have completely different reactions to Tamoxifen. You might consider trying it first, (give it a few months at least) review your risk and decide if it's working for you. If I had the same SE's as my friend, I'd probably still be on it. You just never know how your body is going to react. 

    PS. my friend had a UMX DIEP and now loves her results. Give it time. And know that you're probably in the beginning process of really wrapping your head around all of this stuff. That takes more time than you would think. PM me if you want to talk - sounds like we are in the same neck of the woods :)

  • SoCalMom71
    SoCalMom71 Member Posts: 15
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    I started Tamoxifen 3 weeks ago and so far have minimal side effects if any. I think in this case the benefits of taking tamoxifen definitely outweigh the risks. Why don't you try it for few days and see how your body reacts to it. If it doesn't suit you ask your Onco. If there are other treatment options. Take care and be positive that there won't be any side effects if you decided on taking tamoxifen. Positive thinking has really worked wonders for me. 

  • blanviper
    blanviper Member Posts: 7
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    Positive thinking is fine but it's not necessarily going to relieve you of having side effects. I didn't read up on side effects before I started and neither did my friend. We both went into thinking only good thoughts and we had completely different experiences. Nor does the benefits of tamoxifen outweigh the risks in some people. It is truly individual and we've had numerous posters on some of our boards where their onc said it wasn't worth it or advisable to take. In my case, my onc was more than ok with me not taking something that was so adversely effecting my quality of life. We did the math and the reality is I still have great odds for no recurrence. The only way to know is to try it if it is recommended for you. It may work out great, or not. I am glad it's working out great for my friend that's she's able to be on Tamoxifen with few side effects.

    But blanket statements about positive thinking and benefits negate the realities some people face in terms of side effects and their real potential benefits. I think we all have enough pressure without reading stuff that promotes guilt by suggesting the drug outweighs the risks in ALL cases or that you won't get side effects by thinking differently. 

  • melissa2013
    melissa2013 Member Posts: 3
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    I was 44 when I was diagnosed in November.   I also selected  BMX and DIEP.   I started Tamoxifen in January, and so far have only had hot flashes which are totally manageable.  It can feel overwhelming to make all of these hard choices in a short period of time.  You just have to do what is right for you. 

  • GowanusGal
    GowanusGal Member Posts: 25
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    Hi everyone, thank for your thoughts on this subject. It's been helpful to hear everyone's experience. I have really been overwhelmed by recovery and the speed at which everything has happened. Reading the boards is helpful and sometimes frightening.  Part of me really resists taking on the added drugs.  The other sees the stage IV sisters and makes me want to do whatever it takes to live. 

    My body and mind is still recovering and 2 weeks out I realize I really need to take it easy.  I have a very active life in a fast paced city and I am not used to asking myself to relax :).  I will get my oncotype in a week or so.  When that happens, I will know a lot more.  Thanks!

    Best wishes,

    GG

  • juneping
    juneping Member Posts: 634
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    hi GG,

    I am taking dr George Wong s herbs and it helps me with the SE. A lot of his patients only take his herbs and no tamxo...I take tamxo bc I am very highly ER/pr +. Google him and email that you want to meet with him. 

    And if you do take tamxo, daily exercise helps a lot to reduce the SE. And I hope you already knew you need to eat organic and especially sans the conventional meat and eggs.

  • Bettyboops
    Bettyboops Member Posts: 117
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    hi  gg

    I had a dmx last year with early stage BC in one breast, the other was removed as a preventative as my mom died of breast cancer. I did find some invasive cancer too after ther surgery along with DCIS s and lobular. I refused the tamoxifen. I asked my oncologist, who I like very much, why it would be advantageous for me personally. I also was under the impression before BC that tamoxifen had a cumulative effect and would "protect" you long term after the five years or now 10 years of taking it. Not true! It is only supposed to be protective while you are taking it. In any case, my oncologist said she would look for some statistical data for me. Well, guess what, she could not, with any surety, say that taking tamoxifen would be any better than not for me. In other words, I have a 2. Percent chance of recurrence and tamoxifen would maybe provide a 2 percent guaranty of no recurrence. with this toss up I opted for no drugs. Estrogen does help heart health , bone health and number of other things that I thought were important enough to not block what my body might produce. Like everything else with BC, it's an individual decision. My advice is, Ask for the statistics for your age and situation and don't do anything unless there is proof positive that it will be an advantage for you as an individual. 

    I'm a holistic nutrition and wellness counselor by trade- scary thing is all that perfect eating of organic foods for years does not mean you will not get breast cancer because it happened to me! I did have a genetic connection to be clear. Now I think the most important thing is to keep the liver clean so it can process the hormones and get rid of the metabolites  that might cause cancer. My opinion is drugs just clog the liver up more.  There are some tests now that a holistic doc can do to see how your liver processes estrogen. I had this done recently and surprise, my liver doesn't process estrogen well. I'm taking care of my liver, not covering up symptoms with drugs. That's my own personal opinion but I thought I'd mention it in case it helps someone.

    Best,

  • GowanusGal
    GowanusGal Member Posts: 25
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    Betty,  That is very interesting information.  I am looking forward to finally meeting the MO to ask the questions.  I am still waiting for that oncotype for my final treatment recommendations.  I have stage 1B and they found some micro cancer cells in one of my lymphnodes.  I don't know what that means, but with my age (40), people want to be aggressive with my treatment. SIgh.

    I am in agreement that there doesn't seem to be data on people without Tamoxifin with similar early stage cancers.  The internet only yields very scary results, so I am looking forward to chatting with the docs.  My fingers are crossed that the dreaded CHEMO does not come up as a suggestion.

    Wish me luck!

    =GG

  • bcincolorado
    bcincolorado Member Posts: 4,698
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    I've been on the "big T" since January 2010.  My oncologist said we'd discuss it next year.  The worse side effect is weight gain and hot flashes for me.  But the peace of mind for me is worth it all.  My son-in-law's Grandma was so concerned about recurrance she refused to go off it and stayed on for over 15 years before she died (other causes). 

    I know someone else who is a nurse and put off her own mastectomy since she did not want her son's high school years to be consumed with mom's cancer, and instead went on Tamoxifen to keep it from growing.  It worked!  He graduates this year and then she can deal with her surgery after that, but she went over 2 years just on Tamox and they monitored her well.

    It does seem to work. 

  • matsgirlie
    matsgirlie Member Posts: 5
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    What brand of Tamoxifen is everyone on? I heard from another lady that she had little to no side effects on the "Mylan" brand but terrible side effects on the "Watson" brand including hair thinning!! For some reason, her MO is not able to find the Mylan brand with the right dosage so she is told she has to be on the Watson. ????? Im thinking tamoxifen is going to be prescribed to me due to my age (41) and dx. Thoughts????

  • corky60
    corky60 Member Posts: 453
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    I take the Watson brand and have had no hair thinning and no weight gain.  As a matter of fact I've lost weight by using Fitday, weighing my food and counting calories.  I am eating healthy.  I've had some other side effects but most women handle this medication with no, few, or manageable side effects.

  • matsgirlie
    matsgirlie Member Posts: 5
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    oh wow! good to know thanks! anyone else?

  • farmerlucy
    farmerlucy Member Posts: 596
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    I'm on Watson. Seems likely hair may have thinned initially but back to normal now. Weight gain is cause I've been eating like a pig, otherwise the only SE is occasional hot flashes.

  • robsp
    robsp Member Posts: 9
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    To have some numbers you can try 

    https://www.adjuvantonline.com/online.jsp

    You have to register to use the tool and have some knowledge of cancer treatments but you have to say that you are medical professional or ask someone from your hospital to help you.

    http://www.predict.nhs.uk/predict.html

    You do not need to register and is easier to use.

    I am not medical professional but I copied a result sample below from adjuvantonline to you have an idea. Oncotype will give you a better estimative of your risks.

    Age: 40
    Comomorbidity: Average for Age
    ER status: Positive
    Tumor Grade: 2
    Tumor Size: 0.1 to 1 cm
    Positive Nodes: 0
    Chemo: Third Generation

    Result for Relapse:

    After 10 years
    no chemo, no tamoxifen
    80.4% chance to be alive without cancer
    17.8% cancer relapse
    1.8% die for other causes

    With chemo only
    90.4% chance to be alive without cancer
    7.8% cancer relapse
    1.8% die for other causes

    With chemo and tamoxifen
    93,3% chance to be alive without cancer
    4,9% cancer relapse
    1.8% die for other causes