Is There Anyone Here That is NOT Taking Hormone Therapy?

Ritzy
Ritzy Member Posts: 4,381 Member
edited March 2014 in Breast Cancer #1
I was just wondering if some of you bc survivors have decided to not take tamoxifen or any of the other hormone therapy pills that are prescribed for our treatment, if we are ER and PR+. And, if you aren't taking it, what made you come to that decision? And, how many of you started it, and, then stopped because of side effects? And, what were those side effects? I know this is a lot of questions, but, my oncologist brought the hormone therapy up to me, and, I just am not for sure if I want to take it or not. Thank you!

Sue :)
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Comments

  • chenheart
    chenheart Member Posts: 5,159
    It's so funny~ I thought of
    It's so funny~ I thought of my 5 years of Arimidex as NOT taking hormones~ rather they were blocking the production of estrogen, as my BC was estrogen Positive. If anyone were to ask me, I would say I have never taken hormones! This isn't exactly what you were asking, but when I saw the title of your post, I thought it applied to me! LOL But I see now that it isn't what you meant! :-)

    Hugs,
    Chen♥
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    chenheart said:

    It's so funny~ I thought of
    It's so funny~ I thought of my 5 years of Arimidex as NOT taking hormones~ rather they were blocking the production of estrogen, as my BC was estrogen Positive. If anyone were to ask me, I would say I have never taken hormones! This isn't exactly what you were asking, but when I saw the title of your post, I thought it applied to me! LOL But I see now that it isn't what you meant! :-)

    Hugs,
    Chen♥

    ?
    I am confused. Isn't that what they call it? Hormone therapy? Tamoxifen and the Aromatase inhibitors? That is what I was told and what all of my literature says.

    And, I have delayed taking it myself.

    Hugs, Diane ♥
  • Marcia527
    Marcia527 Member Posts: 2,729
    OK. I confess. I'm not
    OK. I confess. I'm not taking the pills. But you have to remember that every person is different and I was told they weren't helping me that much anyway. I started with Tamoxifen in 2004. After nine months the onc took a blood test to determine that I was in menopause. I was spotting and after different tests had to have a D&C. The Tamoxifen might not have contributed but just in case switched me to Aromasin because I also had a sister with uterin cancer. So I stayed on the Aromasin 2 1/2 years and started having trouble with rashes and foot sores. The onc didn't think the medication had any thing to do with it and she was right. She took me off the meds for 3 months and the problems continued but switched me to Arimidex anyway. I took it for a couple of weeks and stopped because it was so expensive and by that time no prescription insurance. The worse side effect for me was the meds turned my body into a raging furnace. Don't be afraid to try the medication. If you have problems you can always stop. Most everything I blamed on the meds wasn't caused by it. I also have Parkinson's diagnosed in 2006 and some day may have to take meds for that. So for now just decided I didn't want to. But that's me.
  • jk1952
    jk1952 Member Posts: 613
    Marcia527 said:

    OK. I confess. I'm not
    OK. I confess. I'm not taking the pills. But you have to remember that every person is different and I was told they weren't helping me that much anyway. I started with Tamoxifen in 2004. After nine months the onc took a blood test to determine that I was in menopause. I was spotting and after different tests had to have a D&C. The Tamoxifen might not have contributed but just in case switched me to Aromasin because I also had a sister with uterin cancer. So I stayed on the Aromasin 2 1/2 years and started having trouble with rashes and foot sores. The onc didn't think the medication had any thing to do with it and she was right. She took me off the meds for 3 months and the problems continued but switched me to Arimidex anyway. I took it for a couple of weeks and stopped because it was so expensive and by that time no prescription insurance. The worse side effect for me was the meds turned my body into a raging furnace. Don't be afraid to try the medication. If you have problems you can always stop. Most everything I blamed on the meds wasn't caused by it. I also have Parkinson's diagnosed in 2006 and some day may have to take meds for that. So for now just decided I didn't want to. But that's me.

    I thought the same as

    I thought the same as Claudia, that the estrogen was being blocked or sent somewhere other than my breast (I think that's the way it was explained 9 years ago when I went on Tamoxifen). I felt that I needed to do whatever I could to protect myself from the beast returning. I wasn't bothered much by the minor side effects (a couple hot flashes), but I did develop blood clots after I had taken it for six months. I also had a nasty insect bite at the same time, so it's hard to tell whether the clots had anything to do with the Tamoxifen, or if they were due to something else. I'm glad that I tried it, so I could know that I had done whatever I could, but I wasn't too disappointed to have to stop, either.

    Joyce
  • taleena
    taleena Member Posts: 1,612 Member
    Marcia527 said:

    OK. I confess. I'm not
    OK. I confess. I'm not taking the pills. But you have to remember that every person is different and I was told they weren't helping me that much anyway. I started with Tamoxifen in 2004. After nine months the onc took a blood test to determine that I was in menopause. I was spotting and after different tests had to have a D&C. The Tamoxifen might not have contributed but just in case switched me to Aromasin because I also had a sister with uterin cancer. So I stayed on the Aromasin 2 1/2 years and started having trouble with rashes and foot sores. The onc didn't think the medication had any thing to do with it and she was right. She took me off the meds for 3 months and the problems continued but switched me to Arimidex anyway. I took it for a couple of weeks and stopped because it was so expensive and by that time no prescription insurance. The worse side effect for me was the meds turned my body into a raging furnace. Don't be afraid to try the medication. If you have problems you can always stop. Most everything I blamed on the meds wasn't caused by it. I also have Parkinson's diagnosed in 2006 and some day may have to take meds for that. So for now just decided I didn't want to. But that's me.

    I must confess that I have
    I must confess that I have been considering not taking part in hormone therapy... at first I was told I would be on Tamoxifen... I am premenopausal, and receptor + bc... I will just be starting seven weeks of rads on Tuesday.. afterward my onco wants me to start the RX.. however a blood test revealed that I am a poor metabolizer of Tamoxifen, so he wants me to take Zoladex injections (monthly) to put me into a forced menopause... then have me take Femera... I have done a lot of research on the Zoladex, and the thought of those injections makes me more anxious than the thought of rads... so.... my husband is insistant that I do it... however, I am not so convinced... still teetering back and forth...

    ~T
  • phoenixrising
    phoenixrising Member Posts: 1,508
    taleena said:

    I must confess that I have
    I must confess that I have been considering not taking part in hormone therapy... at first I was told I would be on Tamoxifen... I am premenopausal, and receptor + bc... I will just be starting seven weeks of rads on Tuesday.. afterward my onco wants me to start the RX.. however a blood test revealed that I am a poor metabolizer of Tamoxifen, so he wants me to take Zoladex injections (monthly) to put me into a forced menopause... then have me take Femera... I have done a lot of research on the Zoladex, and the thought of those injections makes me more anxious than the thought of rads... so.... my husband is insistant that I do it... however, I am not so convinced... still teetering back and forth...

    ~T

    I am so glad you had that
    I am so glad you had that test done. I know it puts you into a quandary about what to do but it's still good to know. To think a few years ago you'd take that Tamoxifen for 5 yrs and perhaps suffer horrific se only to find out it didn't work. If you are done having children perhaps undergo an oophorectomy?? None of this is easy is it?? My best to you......
    hugs
    jan
  • chenheart
    chenheart Member Posts: 5,159
    DianeBC said:

    ?
    I am confused. Isn't that what they call it? Hormone therapy? Tamoxifen and the Aromatase inhibitors? That is what I was told and what all of my literature says.

    And, I have delayed taking it myself.

    Hugs, Diane ♥

    I suppose it is 6 of 1 half
    I suppose it is 6 of 1 half a dozen of the other~ Estrogen IS a hormone, and Tamox and Arimidex are blockers, that's why I say I have not taken any hormones! It is indeed "hormone therapy" but only in the sense that this therapy blocks hormones.

    When I otherwise think of Hormone Therapy, I think of "HRT",or Hormone Replacement Therapy. Which of course most of us avoid not just like the plague, but like CANCER!!! :-)

    Are we all confused now?????

    Hugs,
    Chen♥
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    chenheart said:

    I suppose it is 6 of 1 half
    I suppose it is 6 of 1 half a dozen of the other~ Estrogen IS a hormone, and Tamox and Arimidex are blockers, that's why I say I have not taken any hormones! It is indeed "hormone therapy" but only in the sense that this therapy blocks hormones.

    When I otherwise think of Hormone Therapy, I think of "HRT",or Hormone Replacement Therapy. Which of course most of us avoid not just like the plague, but like CANCER!!! :-)

    Are we all confused now?????

    Hugs,
    Chen♥

    It is hormone therapy
    I think that is why it is called Hormone Therapy, and, not Hormone Replacement Therapy. There is a huge difference. I don't think anyone was confused but you Claudia. lol But, you get it now. lol

    And, I am not on any yet.
  • chenheart
    chenheart Member Posts: 5,159

    It is hormone therapy
    I think that is why it is called Hormone Therapy, and, not Hormone Replacement Therapy. There is a huge difference. I don't think anyone was confused but you Claudia. lol But, you get it now. lol

    And, I am not on any yet.

    I know what I said, I just don't know what I mean! Or vice versa
    Well, there ya go! If I had only paid more attention to my very own words, I would not have been confused! LOL Thanks for unscrambling my brain!


    HAHAHAHAHAHA!

    Chen♥
  • Kylez
    Kylez Member Posts: 3,761 Member

    I am so glad you had that
    I am so glad you had that test done. I know it puts you into a quandary about what to do but it's still good to know. To think a few years ago you'd take that Tamoxifen for 5 yrs and perhaps suffer horrific se only to find out it didn't work. If you are done having children perhaps undergo an oophorectomy?? None of this is easy is it?? My best to you......
    hugs
    jan

    Not yet
    I haven't taken anything. My oncologist is still trying to convince me. I am just not enthused about the side effects of any of the hormone therapy drugs.

    ♥ Kylez ♥
  • chenheart
    chenheart Member Posts: 5,159
    Kylez said:

    Not yet
    I haven't taken anything. My oncologist is still trying to convince me. I am just not enthused about the side effects of any of the hormone therapy drugs.

    ♥ Kylez ♥

    For what it's worth
    For what it's worth, I finished the entire 5 years of Arimidex in March ( or was it February??) and I had NO noticable side-effects. During those 5 years, I continued to walk 5 miles 3X a week, and go to Jazzercise classes 3X a week as well. I did 5 and 10K's, a half-marathon, zip-lined in Mexico, went to the Inauguration with 2 million ppl in the freezing cold,was in a ping pong tournament ( a semi-finalist, if I may say so!). I also go camping with 200 friends every year, at home I of course do the house keeping, cooking, laundry, love-making, and everything everyone else who lives/loves life does!!! I am not bragging at all, I am doing nothng extraordinary...but I lived before, during and after Cancer treatment, including Hormone Therapy. I hope all of your experiences with therapy keep you as healthy and active too.

    Hugs,
    Chen♥
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    chenheart said:

    I know what I said, I just don't know what I mean! Or vice versa
    Well, there ya go! If I had only paid more attention to my very own words, I would not have been confused! LOL Thanks for unscrambling my brain!


    HAHAHAHAHAHA!

    Chen♥

    Poor Chen. Want a
    Poor Chen. Want a cookie?

    Sue :)
  • Jeanne D
    Jeanne D Member Posts: 1,867
    chenheart said:

    For what it's worth
    For what it's worth, I finished the entire 5 years of Arimidex in March ( or was it February??) and I had NO noticable side-effects. During those 5 years, I continued to walk 5 miles 3X a week, and go to Jazzercise classes 3X a week as well. I did 5 and 10K's, a half-marathon, zip-lined in Mexico, went to the Inauguration with 2 million ppl in the freezing cold,was in a ping pong tournament ( a semi-finalist, if I may say so!). I also go camping with 200 friends every year, at home I of course do the house keeping, cooking, laundry, love-making, and everything everyone else who lives/loves life does!!! I am not bragging at all, I am doing nothng extraordinary...but I lived before, during and after Cancer treatment, including Hormone Therapy. I hope all of your experiences with therapy keep you as healthy and active too.

    Hugs,
    Chen♥

    Undecided, Not Convinced and Not Sure
    I wasn't going to post and then thought, why not. I am one of those that the percentage of hormone therapy reducing the chance of a recurrence is very, very small. Granted, I have had bc twice now, but, not a recurrence, a new cancer 23 years later. And, I may start taking hormone therapy, but, at this time, I am still not convinced that it is worth it for 2%.

    Love, Jeanne ♥
  • Ritzy
    Ritzy Member Posts: 4,381 Member

    I am so glad you had that
    I am so glad you had that test done. I know it puts you into a quandary about what to do but it's still good to know. To think a few years ago you'd take that Tamoxifen for 5 yrs and perhaps suffer horrific se only to find out it didn't work. If you are done having children perhaps undergo an oophorectomy?? None of this is easy is it?? My best to you......
    hugs
    jan

    So right Jan
    Jan, you are right. That test is very important to have. I hope everyone who is suppose to go on tamox has it done. Good information!

    Sue :)
  • Alexis F
    Alexis F Member Posts: 3,598
    Ritzy said:

    So right Jan
    Jan, you are right. That test is very important to have. I hope everyone who is suppose to go on tamox has it done. Good information!

    Sue :)

    Welllllllllllllllll

    Welllllllllllllllll
  • chenheart
    chenheart Member Posts: 5,159
    Jeanne D said:

    Undecided, Not Convinced and Not Sure
    I wasn't going to post and then thought, why not. I am one of those that the percentage of hormone therapy reducing the chance of a recurrence is very, very small. Granted, I have had bc twice now, but, not a recurrence, a new cancer 23 years later. And, I may start taking hormone therapy, but, at this time, I am still not convinced that it is worth it for 2%.

    Love, Jeanne ♥

    I hope you didn't think I
    I hope you didn't think I was trying to sway you ( or anyone) into making a decision not in their best interest, be it physical or emotional! I was simply weighing in on my personal experience with the side effects of Arimidex, as I know there are horror stories! Just that mine was thankfully not one of them, and I hope that fear alone, as opposed to research and a personal decision based on fact is not keeping someone from hormone ( or any!) therapy!

    Hugs,
    Chen♥
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    Good question Ritz. Will
    Good question Ritz. Will definitely follow this thread as Tamoxifen was prescribed for me. Am curious to hear what others have to say as I'm a tad bit nervous about the drug. Thanks for posting your question.

    Bella Luna
  • dbs1673
    dbs1673 Member Posts: 203

    Good question Ritz. Will
    Good question Ritz. Will definitely follow this thread as Tamoxifen was prescribed for me. Am curious to hear what others have to say as I'm a tad bit nervous about the drug. Thanks for posting your question.

    Bella Luna

    start and stop
    I was actually on tamoxifen for nearly 3 years BEFORE I was diagnosed. I had several biopsies and an abnormal reading but not BC. My mother had breast cancer at age 48. Trying to prevent the breast I started on the Tamoxifen at age 45. I am fortunate that I had absolutely no side effects. During that time I also had the BRCA testing done and it was neg. Hello age 48 when life wasn't great and the beast arrived. My pathology report had a "borderline" HR reading. I had double mast. After consulting with the oncologist we both agreed there really was not any benefit for me to continue. I will say that when I stopped the tamoxifen, I had some of the heaviest periods ever. A year later things have normaled out considering I'm now pre-menapausal. I know it's a lot to think about but I wanted all the artillery I could get.

    dawn
  • tasha_111
    tasha_111 Member Posts: 2,072
    dbs1673 said:

    start and stop
    I was actually on tamoxifen for nearly 3 years BEFORE I was diagnosed. I had several biopsies and an abnormal reading but not BC. My mother had breast cancer at age 48. Trying to prevent the breast I started on the Tamoxifen at age 45. I am fortunate that I had absolutely no side effects. During that time I also had the BRCA testing done and it was neg. Hello age 48 when life wasn't great and the beast arrived. My pathology report had a "borderline" HR reading. I had double mast. After consulting with the oncologist we both agreed there really was not any benefit for me to continue. I will say that when I stopped the tamoxifen, I had some of the heaviest periods ever. A year later things have normaled out considering I'm now pre-menapausal. I know it's a lot to think about but I wanted all the artillery I could get.

    dawn

    I Stopped
    I stopped taking Tamoxifen last week, I am just too scared by the horror stories about it, all from reputable sources. I have an appointment with my oncologist (Dr. Charisma-Bypass) on wednesday to try to get some REAL answers.......I am also on a contradictory med 'Zoloft' so I want to know what to do about that too.........I recently tried stopping the zoloft, with very negative effects...... I know this won't help you at all, but I will be back with SOME answers on wednesday night........

    Hugs Jxxxxxxxxx
  • jnl
    jnl Member Posts: 3,869 Member
    tasha_111 said:

    I Stopped
    I stopped taking Tamoxifen last week, I am just too scared by the horror stories about it, all from reputable sources. I have an appointment with my oncologist (Dr. Charisma-Bypass) on wednesday to try to get some REAL answers.......I am also on a contradictory med 'Zoloft' so I want to know what to do about that too.........I recently tried stopping the zoloft, with very negative effects...... I know this won't help you at all, but I will be back with SOME answers on wednesday night........

    Hugs Jxxxxxxxxx

    Interesting
    This thread is interesting. Some have taken it, some won't and some aren't sure. I look forward to seeing more replies. And, I love your picture Sue. Very funny lol

    Leeza