Hormonal Treatments Yes or No?

ReturntoCamelot
ReturntoCamelot Member Posts: 11
edited March 2014 in Breast Cancer #1
I had a lumpectomy in January and I am on week 5 of 6 for the rads. My nodes were clear of everything and when I went to the Chemo Oncol for an eval he showed where out of 100 people only 5 needed the chemo (so of course I opted out of it and he agreed) and 5 had a favorable impact for the hormonal treatments after the radiation.
Right now, feeling how I do I just don't want to do the Tam. For me the 5 out of 100 just isnt enough as the side effects could be so bad. Has anyone else opted out of the Tam. hormone treatment or am I just being a big baby?? :P
Jennifer

Comments

  • Dot53
    Dot53 Member Posts: 239 Member
    #2
    Hi Jennifer
    I felt the same way you do at first.. I didn't really want to go on the hormone drugs b/c the chance of recurrance for me is only 10% but agreed to give it a try. I went on Arimidex first. My joints hurt so bad after a week, I called and they took me off and put me on Femera. That was worse, more joint pain and this time hair loss. I then tried Tamoxifen and after a couple weeks told myself it wasn't worth it. By then it was time to see my oncologist; as I sat waiting for her to come in, I thought about how I was going to tell her that I didn't want to take anything else (we still had the option of trying Aromisin). When the doctor came in I noticed her beautiful head scarf and realized that she too had been diagnosed with the beast and was undergoing treatment. I felt silly trying to rationalize why I didn't want to take these drugs but presented my case anyway.. she looked at me with such compassion and said "Don't you want to live your life knowing that we have tried everything in our arsenal to prevent your cancer from coming back"? It was right then that I had an epiphany. I realized that this brave, intelligent woman was correct, she was fighting for her life and that I also had the tools to fight for mine but I just didn't want to use them. I started taking the Aromisin that day and have not had any adverse side effects...
    The choice is yours to make but I would ask you the same question my doctor asked me...
    "Don't you want to live your life knowing that you have tried everything you could to prevent the beast from coming back"?

    Dot
  • pattimc
    pattimc Member Posts: 431
    #3
    Dot53 said:

    Hi Jennifer
    I felt the same way you do at first.. I didn't really want to go on the hormone drugs b/c the chance of recurrance for me is only 10% but agreed to give it a try. I went on Arimidex first. My joints hurt so bad after a week, I called and they took me off and put me on Femera. That was worse, more joint pain and this time hair loss. I then tried Tamoxifen and after a couple weeks told myself it wasn't worth it. By then it was time to see my oncologist; as I sat waiting for her to come in, I thought about how I was going to tell her that I didn't want to take anything else (we still had the option of trying Aromisin). When the doctor came in I noticed her beautiful head scarf and realized that she too had been diagnosed with the beast and was undergoing treatment. I felt silly trying to rationalize why I didn't want to take these drugs but presented my case anyway.. she looked at me with such compassion and said "Don't you want to live your life knowing that we have tried everything in our arsenal to prevent your cancer from coming back"? It was right then that I had an epiphany. I realized that this brave, intelligent woman was correct, she was fighting for her life and that I also had the tools to fight for mine but I just didn't want to use them. I started taking the Aromisin that day and have not had any adverse side effects...
    The choice is yours to make but I would ask you the same question my doctor asked me...
    "Don't you want to live your life knowing that you have tried everything you could to prevent the beast from coming back"?

    Dot

    I'm on tamoxifen
    And fortunately for me I have not had horrible side effects. Sure, I've had hot flashes and a few aches and pains but not unbearable. I had a lumpectomy, 4 cycles of T/C and 33 radiation treatments. I was Stage II with 1 lymph node positive. I just decided at beginning I was going to do everything. If it comes back, at least I know I did all that I could.

    The decision, of course, is yours. And decisions can be gut renching. I wish you well!

    Patti
  • sgamtd
    sgamtd Member Posts: 124
    #4
    Hormonal treatment
    Jennifer, yes it's hard to make a decision, especially since these after treatments with tamox or one of the ALs don't come with a guarantee, but please think about at least trying the tamox, you can always stop if you get unbearable side efects, remember not all of us get them. No I don't think you are being a big baby, it does sound scary, but a 3 to 4 week trial of the tamox may prove that you handle it well, and then maybe thats the course you should take.
    Hugs
    sgamtd
  • carkris
    carkris Member Posts: 4,553 Member
    #5
    pattimc said:

    I'm on tamoxifen
    And fortunately for me I have not had horrible side effects. Sure, I've had hot flashes and a few aches and pains but not unbearable. I had a lumpectomy, 4 cycles of T/C and 33 radiation treatments. I was Stage II with 1 lymph node positive. I just decided at beginning I was going to do everything. If it comes back, at least I know I did all that I could.

    The decision, of course, is yours. And decisions can be gut renching. I wish you well!

    Patti

    I need to know I did
    I need to know I did everything I could. I am going on tamoxifen and dont want to. I didnt have a choice about the Breast cancer but i do have choices on how to fight it. good luck with your decision.
  • Different Ballgame
    Different Ballgame Member Posts: 868
    #6
    You can always stop taking the drug.
    Jennifer,

    First, you are not being a big baby. This is an extremely important decision. Lately, I have been saying that everything we do carries a consequence. Mastectomy, breast reconstruction, radiation, chemo, the 5-year chemo pill - all carry consequences - something that the non-cancer person cannot relate to.

    I was leaning not to take Arimidex, right up to my visit with the oncologist. Two factors changed my mind. The first thought was that I can always stop taking the pill if the side affects are too severe; this is my safety net. Second, while I was in breast reconstruction, I did a lot of research and learned that many things can go wrong with breast reconstruction. I wanted thoese breasts no matter what!!! I did fine with the reconstruction and did not experience any of the wrongs that can happen with breast reconstruction.

    So...I have a number of goals while taking Arimidex. I am exercising by walking to hopefully maintain my bone density. (I just found out at my live support group meeting that one woman has been on Arimidex for 1-1/2 years. She walks and exercises. Her bone density remains the same - no loss. Hearing that news was definitely encouraging to me.) Nest, I am weight watching to lose weight and to prevent a weight gain while on Arimidex. xSo far, I am losing weight. I take tons of vitamins and bone and joint supplements - hopefully these will continue to keep my internal body in tip top shape while on Arimidex.

    I guess you could say that I took a negative and turned it into a positive.

    As I continue to do all of these preventatives, I will post to let you know if they are successful.

    Oh...a healthy diet is also very important, whether you take the 5-year chemo pill or not. Cook from scratch...food should be fresh - nothing frozen, no microwaving.

    Good luck, Jennifer.

    Lots of Hugs,
    Janelle
  • BethInAz
    BethInAz Member Posts: 203 Member
    #7
    Tamoxifen
    I agree with Dot. I looked at my husband and daughters and determined that my life was valuable to them. I just had to do whatever I could to keep this disease at bay. We are battling a nasty disease and we have tools in the arsenal that are tested and that work. I wanted to do everything I could to stay around for my family. So far I've been through the chemo and have 5 weeks of Tamoxifen into my system. Hot flashes to beat the band - but that's it as far as side affects. I figure everything in life has a risk involved. I pray that you will feel confirmed in whatever decision you make. It is a very personal decision. Just make it with being fully informed as to the pros and cons.
    Much love,
    beth
  • crselby
    crselby Member Posts: 441 Member
    #8
    do not or do
    Just as you don't fear the 5% chance of problems that may occur if you don't take chemo, you shouldn't fear the small percentages of serious side effects from taking Tamoxifen. Each side effect has a different percentage (see ACS's info on Tamoxifen) but they are SMALLER than 5%! If you feel comfortable with the first decision (no chemo), I would hope you'd feel comfortable with the second (take Tamoxifen). It is easier for people to say, "I'm NOT going to do something" that have repercussions, than it is for them to say, "I will START doing something" that may have side effects. Do you see what I mean? Millions of women are taking it with no serious side effects! Been on it since last November, hot flashes only.
    ~~Connie~~
  • ReturntoCamelot
    ReturntoCamelot Member Posts: 11
    #9
    crselby said:

    do not or do
    Just as you don't fear the 5% chance of problems that may occur if you don't take chemo, you shouldn't fear the small percentages of serious side effects from taking Tamoxifen. Each side effect has a different percentage (see ACS's info on Tamoxifen) but they are SMALLER than 5%! If you feel comfortable with the first decision (no chemo), I would hope you'd feel comfortable with the second (take Tamoxifen). It is easier for people to say, "I'm NOT going to do something" that have repercussions, than it is for them to say, "I will START doing something" that may have side effects. Do you see what I mean? Millions of women are taking it with no serious side effects! Been on it since last November, hot flashes only.
    ~~Connie~~

    Thank you to everyone for
    Thank you to everyone for giving me your opinion. :) I appreciate it very much. I will keep my options open and yes I often tell myself should I do everything I can so it won't come back or do I just stop now. Hard decisions for me as I want to put this behind me. I think for me the fact that I had Hodgkin's at 17 and now this is just too much for my brain to handle. I will listen to the oncol and I will see what he has to say. Thanks and good luck to everyone!
    J
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #10
    Dot53 said:

    Hi Jennifer
    I felt the same way you do at first.. I didn't really want to go on the hormone drugs b/c the chance of recurrance for me is only 10% but agreed to give it a try. I went on Arimidex first. My joints hurt so bad after a week, I called and they took me off and put me on Femera. That was worse, more joint pain and this time hair loss. I then tried Tamoxifen and after a couple weeks told myself it wasn't worth it. By then it was time to see my oncologist; as I sat waiting for her to come in, I thought about how I was going to tell her that I didn't want to take anything else (we still had the option of trying Aromisin). When the doctor came in I noticed her beautiful head scarf and realized that she too had been diagnosed with the beast and was undergoing treatment. I felt silly trying to rationalize why I didn't want to take these drugs but presented my case anyway.. she looked at me with such compassion and said "Don't you want to live your life knowing that we have tried everything in our arsenal to prevent your cancer from coming back"? It was right then that I had an epiphany. I realized that this brave, intelligent woman was correct, she was fighting for her life and that I also had the tools to fight for mine but I just didn't want to use them. I started taking the Aromisin that day and have not had any adverse side effects...
    The choice is yours to make but I would ask you the same question my doctor asked me...
    "Don't you want to live your life knowing that you have tried everything you could to prevent the beast from coming back"?

    Dot

    I still haven't taking the
    I still haven't taking the tamox. I felt that I just didn't want to risk the side effects, one of them being another cancer. I have read of so many on here with recurrence's and they even took the tamox, so, I am putting it for now, or, maybe forever. It is your own decision and choice. Good luck!

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