• Hi everyone I'm new to this so please forgive any mistakes. :] I just finished with radiation last week & wanted some advice...

    Asked by Deb949 on Tuesday, November 20, 2012

    Hi everyone I'm new to this so please forgive any mistakes. :] I just finished with radiation last week & wanted some advice...

    It is recommended that I take tamoxifen for five years. I am reluctant to take it. I had DCIS & it was very early stage. I guess the risks associated with the drug scare me. Am I crazy for feeling this way?? Thanks for listening.

    11 Answers from the Community

    11 answers
    • ticklingcancer's Avatar

      I don't think you're crazy at all. Tamoxifen seems to be a popular subject. Expect some feedback shortly.

      almost 4 years ago
    • lynn1950's Avatar

      I don't take tamoxifen; I am post-menopausal so I take Arimidex. There definitely are side effects to deal with when you take either drug. For me, the Arimidex cuts my chances of recurrence in half. It is worth it to me.

      I know we are not statistics, but I would look at Tamoxifen's affect on recurrence rate before making a decison pro or con. Many people are very successful taking Tamoxifen, and it may save your life!

      almost 4 years ago
    • Nancebeth's Avatar

      I was in the same boat. I had a bilateral mastectomy with reconstruction, went through 6 rounds of chemo and then was supposed to take Tamoxifen for 5 years. I had really bad side effects from the chemo and was reluctant to take the Tamox. I started it and was on it for almost 2 months when I stopped it and I feel like I have my life back. I write a blog (nancebeth.blogspot.com) and I have a few entries about Tamox and why I decided to stop taking it.

      And you are NOT crazy. I waffled on my decision for weeks before I decided to try it. But I am happy I decided to stop. The 5% points it may have given me wasn't worth my quality of life.

      almost 4 years ago
    • karen1956's Avatar

      No you are not crazy for feeling this way.....I endured AI's for 3 1/2 years and the side effects were just not worth the sacrifice to QOL....I was stage 3 and my onc kept encouraging me to stay on it, but finally it was too much.....for me the statistics are 100%...either you re-occur or you don't (kind of like being pregnant).....I know in my heart that I gave it my all.....BUT....some people have no side effects...go with your heart and as long as you don't have any doubts if you don't take it, go for it.....for me, I'm at peace with whatever the future holds, I know I gave it my all.....

      almost 4 years ago
    • Harry's Avatar

      First, don't worry about making mistakes. Asking for advice is one of the things that this site is for.

      Next, You are certainly not crazy for being concerned. One thing you might think about is that a decision to go ahead isn't final. You can try it for a bit and, if the side effects are too much, stop it.

      almost 4 years ago
    • JudyS's Avatar

      Hi Deb - mistakes do not count here so please do not worry about making any. You will need to talk to your doctor and see how much tamoxifen is going to help stop the chance of reoccurence - i.e. 50%, 30%, 5% and then weigh that against possible side effects. Some people never have the side effects, you might be one of the lucky ones. I tried Femara and tamoxifen, but the bone pain was horrible and it only would make a 5% difference. Both my oncologist and surgeon agreed that it didn't make sense to continue taking it, but ultimately it was my desision and you will need to decide too. You can always start it and if you have problems, discuss it again with your oncologist. Best wishes to you!

      almost 4 years ago
    • nancyjac's Avatar

      I took Tamoxifen for 5 years with my ductal cancer, stage 1 18 years. I had very little side effects. Even though I had a second breast cancer last year, it was a different cancer, not a recurrance. But both cancers were ER+ so now I am on an aromatase inhibitor long term.

      Some people do have more side effect from Tamoxifen than I did, but they are side effects, not risks. The increased risk of recurrence or a new cancer would be from NOT taking it.

      I would suggest starting on it and then if at some point you decide the side effects are more than you want to deal with, you can stop taking it.

      almost 4 years ago
    • mharris' Avatar

      As some of our other friends have mentioned here people have very different reactions (side effects) to the medications. So people take it daily for the entire five years and don't notice it anymore than a Flintstone chewable whereas others take it and feel nearly chemo sick with pill they swallow (that was me). Clearly, I couldn't live that way for five years but like Karen 1956 mentioned, I know I gave it my all. I decided to go with other options. Research and discuss your options with your oncologist. Your effects may be different from others of us. All the best to you Deb!

      almost 4 years ago
    • MaryMoo's Avatar

      I would like to echo what the others have said about this being a personal decision for you. Ask your doctor to explain how much tamoxifen will improve your long term survival rate. I assume you were estrogen/progesterone positive. If not or if your doctors don't know, they need to relook at your tumor and find out. Also, although your cancer was caught at an early stage, the aggressiveness (or lack of it) may also be an important factor in the decision. I would tell you that tamoxifen has been, overall, an incredible success story. If your tumor was E/P positive, I suggest you try taking it and see what your side effects are. I hate my side effects, but I looked at how much it was going to increase my long term survival rate and decided it was worth it. Only 10 more months left.

      almost 4 years ago
    • debco148's Avatar

      Hi Deb.. I just finished radiation in October and also was prescribed Tamoxifen. After doing lots of research, because I don't do medicine of any kind very well, I started it about 3 weeks ago. Not one side effect at all. I was told to take it the same time every day and at night preferably. So I chose 10pm each night. I find that I sleep so much better now. Of course, the chemo and radiation are now out of my system. I have no more fatique and I have been exercising a lot. I don't think you are crazy to feel this way at all. I just felt that the protocol is so well tested by so many and I really trust my oncologist. She is honest and quite frank. This drug has been used for quite a while now and the side effects are less than taking the pill really. You take for 5 years but it prevents those nasty estrogren receptors from starting something up again for up to 10 years. I also have seen a good nutritionist who deals with cancer and plan on changing my whole lifestyle--- the key now is not to have this stuff come back.. we have to use all the tools we have. Good luck and write anytime.. Happy Thanksgiving. Debco

      almost 4 years ago
    • Nanci's Avatar

      You are certainly not crazy for being hesitant to take tamoxifen . I , too was very hesitant to take tamoxifen, so I did a lot of research then finally decided to follow my doctor's advice and took tamoxifen. Dr. Susan Love has a very good book all about breast cancer and dealing with it. It was a big help to me in several areas. What's next did not exist at the time and I really didn't know where to turn for advice. I'll be more than happy to help you in any way I can. Nanci

      almost 4 years ago

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