• Tamoxifen or NO Tamoxifen...???

    Asked by tnblondee on Monday, October 29, 2012

    Tamoxifen or NO Tamoxifen...???

    As I mentioned in a previous post I've been on Tamoxifen since Feb 2012 for triple positive breast cancer, however since I've been suffering from so many side effects my oncologist is letting me take a 2 week break from it to see if it is indeed the Tamoxifen causing everything. I've been off it for 2 weeks now and am feeling quite a bit better, so now it's decision time to stay off it or go back on it. Most people immediately say to go back on it, but my tumor was only 10% estrogen positive which leads me back to the initial question is my quality of life over the next 5 years worth more than the risk of a reoccurence? Especially after reading so many peoples post on here that took Tamoxifen and had a reoccurence anyway. Thoughts, advise, anyone...?

    12 Answers from the Community

    12 answers
    • nancyjac's Avatar
      nancyjac

      That is a decision that only you can make.

      over 4 years ago
    • Nancebeth's Avatar
      Nancebeth

      I am going through something similar as well. I have only been on Tamoxifen for about 6 weeks but I have had some pretty bad side effects. My onc advised to stop for a few days and see if the side effects get better. If so, we know it is the Tamoxifen causing it and I can then decide whether to stay on it or take my chances without it. Right now, the doctors say I have about a 10% chance of recurrence (or as I see it, a 90% change it won't come back) and after 5 years of Tamoxifen, the recurrence chance goes down to 5%. I have to really weight whether my quality of life is worth a 5% change. Some days I feel like I must throw everything I can at this disease to fight it, some days I can barely get out of bed and I feel like I should stop the Tamoxifen and take my chances.
      However, even after all the research, reading other survivor's blogs, etc, only you can decide what is best for you.

      over 4 years ago
    • teddyfuzz's Avatar
      teddyfuzz

      You will have to weigh the risks of not taking the Tamoxifen against the side effects. Are you willing to tolerate the side effects for the chance that your cancer will have a lower rate of recurrence? Or are you willing to risk the cancer coming back for a better quality of life? That's not an easy decision to make. If you stop taking the Tamoxifen and the cancer never comes back then you've made the right decision. If you continue on the Tamoxifen and the cancer never comes back then again, you have made the right decision. It's IF the cancer comes back that you are going to question your decision either way. Listen to the little voice inside of you and you'll know what the right decision is for you. I wish you well.

      over 4 years ago
    • Sweetmouth01's Avatar
      Sweetmouth01

      Hello I would like to give my experience towards taking tamoxifen. I was put on tamoxifen in 2008 after my doctor found something in my left breast that could turn into breast cancer and was told not to ever stop taking it. I was forced to stop due to not having insurance. The only problem I have been having is pain in both breast. I pray that I have not put myself in danger.
      But while I was taking tamoxifen I had no problems of side effects.

      over 4 years ago
    • princess123's Avatar
      princess123

      Why do you have to make the choice of Tamoxifen or nothing? There are other types you can take that wont give such bad side effects. I am on chemo break because of stable tumors and bad side effects. I know I will have to be on treatment the rest of my life, but I am enjoying this break. Good luck. I agree quality of life is a big deal. If you don't have to put up with it forever that makes a difference but 5 years is a long time. Good luck.

      over 4 years ago
    • pll's Avatar
      pll

      I took Tamoxifen for 5 years but tolerated it fairly well. it's a decision only you can make, but it is a very hard one. I once asked my oncologist how will we know if what we are doing works. He said we only know when it doesn't work. that was 18 years ago and it's still working for me - no reoccurance. (stage II, 3 positive lymph nodes). just be sure you are at peace with your decision.

      over 4 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      I had Stage IV Ovarian Cancer at 62. After surgery they up graded me to Stage IIIC.. but said I only had about six months to live. At diagnosis, alone in the exam room waiting for them to tell me what I already had figured out. I was terrified. I spoke with God. I asked him to please take my hand and lead me to where HE wanted me to be. He took my hand and is still holding it and guiding me. I have now been cancer free for almost 7 years. I decided to fight with all within me... I had chemo infusions for almost two years. I was exhausted. My feet went numb and remained numb (but I danced at my grandson's wedding. My fingers are semi numb... sometimes I key in the weirdest words.... My hair... never came back well enough to wear alone. I have the prettiest wigs.... I have my husband, my kids, grandkids... and now two great grandkids. Next year I'll be 70. God is good. Have a chat with Him, listen to what he tells you in your heart.

      over 4 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      I had Stage IV Ovarian Cancer at 62. After surgery they up graded me to Stage IIIC.. but said I only had about six months to live. At diagnosis, alone in the exam room waiting for them to tell me what I already had figured out. I was terrified. I spoke with God. I asked him to please take my hand and lead me to where HE wanted me to be. He took my hand and is still holding it and guiding me. I have now been cancer free for almost 7 years. I decided to fight with all within me... I had chemo infusions for almost two years. I was exhausted. My feet went numb and remained numb (but I danced at my grandson's wedding. My fingers are semi numb... sometimes I key in the weirdest words.... My hair... never came back well enough to wear alone. I have the prettiest wigs.... I have my husband, my kids, grandkids... and now two great grandkids. Next year I'll be 70. God is good. Have a chat with Him, listen to what he tells you in your heart.

      over 4 years ago
    • Miriam's Avatar
      Miriam

      I have an appointment with my oncologist next week and she is planning on starting me on Tamoxifen at that time. This is a big decision for me too and I appreciate reading everyone's point of view and experiences. What type of side effects are we talking about?

      over 4 years ago
    • tnblondee's Avatar
      tnblondee

      Miriam,
      My side effects from Tamoxifen were hot flashes, night sweats, weight gain, fatigue and the icing on the cake that made me consider coming off of it was severe bone pain. I was getting pretty crippled up at 41. So I am near the end of my 2 week break from it and I am feeling much better. So it is going to be a tough decision for me whether to go back on it or not....

      over 4 years ago
    • Tania's Avatar
      Tania

      Hi tnblondee;
      I am a breast cancer survior of 3 years and I take Tamoxifen. The side affects I get are hot flashes, night sweats, weight gain. Every night at 3:00 PM I wake up wanted to stick my head iin the ice box. Other then this I am fine. I do Yoga everynight at home with a CD before I go to sleep and it makes feel good but I have a bad back. My advice to you as if you were my sister or mom is talk it over with your doctor. What does he really recommend. My doctor and I have such a good connection. I ask him if it were your family member what would you recommend and what he tells me is what I do. Keep me posted would like to know what you deciceded. Stay positiive.
      Hugs, Tania, from Miami, Florida

      over 4 years ago
    • SandiD's Avatar
      SandiD

      Is it possible you could have Fibromyalgia also which would aggravate your symptoms? Worth checking in to. Good luck.

      over 4 years ago

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