Has anyone oppted to not take the inhibitors and not had a re-occurance.

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janie560
janie560 Member Posts: 42
Saw oncoligiist today. IDC stage1clear nodes, Oncotype results was 6 if i take estrogen progestrone drugs. Soon will be doing radiation. Has anyone had similiar diagnosis and not do the drugs. They want me to start taking Arimidex

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  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
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    My diagnosis is really
    My diagnosis is really similar to yours Janie and I chose to not take tamox yet and have been doing great.

    I am not sure if I ever will take it. It is my choice, and, the small percentage advantage I was shown didn't convince me to start it.

    Everyone has to decide what is best for them. Good luck to you!


    Hugs, Jan
  • cntgobck03
    cntgobck03 Member Posts: 21
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    My diagnosis is really
    My diagnosis is really similar to yours Janie and I chose to not take tamox yet and have been doing great.

    I am not sure if I ever will take it. It is my choice, and, the small percentage advantage I was shown didn't convince me to start it.

    Everyone has to decide what is best for them. Good luck to you!


    Hugs, Jan

    May I ask why you decided
    May I ask why you decided not to take Tamoxifen? I am at the beginning, just getting ready for surgery, and am looking for all input.
  • mollieb
    mollieb Member Posts: 148
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    I don't think the difference is that small
    I believe the decrease in rate of recurrence if you take tamoxifen or an AI is pretty significant. Ask your doctor. For me it's worth it until the side effects are so bad they keep me from functioning in my daily life, and in five years of tamoxifen it never got a tenth of the way there. Try it before you knock it. I don't know why people are so worried about this before taking a single pill. Believe me, the disruption to your life from a year full of mastectomy, chemo, and radiation is way, way worse than tamoxifen/AI side effects, for all but a very few. Minimize your chance of recurrence if you can.
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
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    mollieb said:

    I don't think the difference is that small
    I believe the decrease in rate of recurrence if you take tamoxifen or an AI is pretty significant. Ask your doctor. For me it's worth it until the side effects are so bad they keep me from functioning in my daily life, and in five years of tamoxifen it never got a tenth of the way there. Try it before you knock it. I don't know why people are so worried about this before taking a single pill. Believe me, the disruption to your life from a year full of mastectomy, chemo, and radiation is way, way worse than tamoxifen/AI side effects, for all but a very few. Minimize your chance of recurrence if you can.

    Jan, I did the same thing
    but I did try all 3 AI's. Never tried Tamoxifen, although it was offered.
    For me I had side effects that affected my daily living. I could barely walk and felt
    very old.
    I feel good now and you're right, it is a very personal decision.

    I always hesitate to say that here because I have seen how upset it makes some.
    I have to be honest and I'm sorry if it offends.

    Hugs,
    Wanda
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    Jan, I did the same thing
    but I did try all 3 AI's. Never tried Tamoxifen, although it was offered.
    For me I had side effects that affected my daily living. I could barely walk and felt
    very old.
    I feel good now and you're right, it is a very personal decision.

    I always hesitate to say that here because I have seen how upset it makes some.
    I have to be honest and I'm sorry if it offends.

    Hugs,
    Wanda

    I have been on tamoxifen for
    I have been on tamoxifen for about 3 1/2 yrs...no side effects to speak of until 3 yrs into it I started bleeding (3 yr post meno-Thickening of ulterus -had totaly hysterctomy May 2011) Prior to bleeding I went @ 6mths for internal utlra sound followed by D & C

    Denise..

    I went back on tamoxifen after being off for about 3 mths pre surgery
  • jphilpo
    jphilpo Member Posts: 177
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    I understand
    I think that women who have suffered terrible side effects from tamoxifen, femara etc... struggle with this on a daily basis. I know I do. I have continued because my dr. has advised me to. He switched me to tamoxifen from femara, which was worse. I know this board must scare new women that are faced with tamoxifen or any other med, but that's what I think is so special about it. It's a place to get all the info, good and bad, and along with your doctor, make the decision that is best for you. Don't be afraid to try something, but always let your doctor know if you are suffering. NONE of us deserve that.

    Jean
  • KathiM
    KathiM Member Posts: 8,028 Member
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    Just finishing 5 years of Tamoxifen....
    Didn't have a hard time with it. I was, however, stage II invasive ductal ER/PR positive, so my need to keep those lymph nodes in check was great....

    Hugs, Kathi
  • Marcia527
    Marcia527 Member Posts: 2,729
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    Not sure you should compare
    Not sure you should compare yourself to others. Everyone is different and some people the meds do help. I was a stage 3a grade 3 and 2 nodes involved but the doc said it would only help me slightly. I took the Tamoxifen for 9 months till I was switched to Aromasin because of spotting and family history of uterine cancer. I stayed on the Aromasin for 2 1/2 years but decided to stop to see if it was causing chronic rashes. It wasn't but I decided to stop anyway. That was Oct 2007. OK so far.

    But that might not be the case for you. Talk to your doctor to find out how much help it would be to you. You could always try it to see how you do on it.
  • mamolady
    mamolady Member Posts: 796 Member
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    I had a patient yesterday
    I had a patient yesterday that was 20 years out and never took tamoxifen or and AI. Not sure the specifics of her tumor but she had had a mastectomy.

    I opted to take arimidex. I was 47 with IDC and LN involvement.


    Everyone is different, this is a very personal decision.

    Cindy
  • cathyp
    cathyp Member Posts: 376 Member
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    mamolady said:

    I had a patient yesterday
    I had a patient yesterday that was 20 years out and never took tamoxifen or and AI. Not sure the specifics of her tumor but she had had a mastectomy.

    I opted to take arimidex. I was 47 with IDC and LN involvement.


    Everyone is different, this is a very personal decision.

    Cindy

    Good Luck w/your decision
    I had IDC Stage 1, clean LN's with a recurrence score of 8. Could not do rads (previously had for Hodgkins Lymphoma) and no chemo (only helped by 2% and have cardiac/pulmonary damage from chemo from HL). Started Tam for 2 mos and had numerous gyno issues and had a TIA so stopped. Was dx'd 12/2007, almost 4 yrs ago.
    Had 3 opinions, local dr, head BC dr at Fox Chase and head BC dr at MSKCC, all said for me, they would not recommend any AI. Have you considering getting additional medical opinions?
    Like you, I'm anxious to hear from others that have not taken any AI's. I don't know if a message board presents a true cross section of BC survivors. My aunt is 89 and she is a 49 year survivor of BC, single mastectomy w/cobalt treatments. Isn't that truely amazing!!?
    All the best to you,
    Cathy
  • Chickadee1955
    Chickadee1955 Member Posts: 355 Member
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    cathyp said:

    Good Luck w/your decision
    I had IDC Stage 1, clean LN's with a recurrence score of 8. Could not do rads (previously had for Hodgkins Lymphoma) and no chemo (only helped by 2% and have cardiac/pulmonary damage from chemo from HL). Started Tam for 2 mos and had numerous gyno issues and had a TIA so stopped. Was dx'd 12/2007, almost 4 yrs ago.
    Had 3 opinions, local dr, head BC dr at Fox Chase and head BC dr at MSKCC, all said for me, they would not recommend any AI. Have you considering getting additional medical opinions?
    Like you, I'm anxious to hear from others that have not taken any AI's. I don't know if a message board presents a true cross section of BC survivors. My aunt is 89 and she is a 49 year survivor of BC, single mastectomy w/cobalt treatments. Isn't that truely amazing!!?
    All the best to you,
    Cathy

    I agree, this is a very
    I agree, this is a very personal decision. Each of us is different in age, stage, chance of recurrence, etc., etc.
    I had Stage I IDC without lymph node involvement. Although I was offered a lumpectomy I chose a bilateral mastectomy. My Oncotype DX score was 18 and I could have opted out of chemo, but chose to go ahead with 4 rounds of C/T. I took Femara for about 9 months and couldn't stand the SEs. Given that with all my factors taken into consideration the benefit of the aromatase inhibitor was very small, I decided to discontinue the Femara. I was then offered Tamoxifen, but decided the risk/benefit wasn't worth it FOR ME. If I would have had lymph node involvement I think I would have decided differently.
    Best thing is to get all the information, talk to your doctors and make a decision you can live with.
    Best wishes with your journey and the decisions to be made along the way.

    Chickadee
  • janie560
    janie560 Member Posts: 42
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    May I ask why you decided
    May I ask why you decided not to take Tamoxifen? I am at the beginning, just getting ready for surgery, and am looking for all input.

    tomoxifen
    I am 64years old and post menapause so this is what they want to start with. Thank u for responding
  • janie560
    janie560 Member Posts: 42
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    Jan, I did the same thing
    but I did try all 3 AI's. Never tried Tamoxifen, although it was offered.
    For me I had side effects that affected my daily living. I could barely walk and felt
    very old.
    I feel good now and you're right, it is a very personal decision.

    I always hesitate to say that here because I have seen how upset it makes some.
    I have to be honest and I'm sorry if it offends.

    Hugs,
    Wanda

    r u still on als and how
    r u still on als and how long did u take them before the side effects leasoned if they did lessen.
  • carkris
    carkris Member Posts: 4,553 Member
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    I agree, this is a very
    I agree, this is a very personal decision. Each of us is different in age, stage, chance of recurrence, etc., etc.
    I had Stage I IDC without lymph node involvement. Although I was offered a lumpectomy I chose a bilateral mastectomy. My Oncotype DX score was 18 and I could have opted out of chemo, but chose to go ahead with 4 rounds of C/T. I took Femara for about 9 months and couldn't stand the SEs. Given that with all my factors taken into consideration the benefit of the aromatase inhibitor was very small, I decided to discontinue the Femara. I was then offered Tamoxifen, but decided the risk/benefit wasn't worth it FOR ME. If I would have had lymph node involvement I think I would have decided differently.
    Best thing is to get all the information, talk to your doctors and make a decision you can live with.
    Best wishes with your journey and the decisions to be made along the way.

    Chickadee

    I think it depends on your
    I think it depends on your diagnosis. My cancer was ER PR positve lobular and big enough for me to be concerned. If it was a smaller cancer perhaps I would reconsider. My rads onc who I really like said it is more important than chemo as it is a targeted therapy. bottom line estrogen receptor positve cancer can come back several years from now, so one has to make a careful decision, and weigh the pros and cons.
  • janie560
    janie560 Member Posts: 42
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    mamolady said:

    I had a patient yesterday
    I had a patient yesterday that was 20 years out and never took tamoxifen or and AI. Not sure the specifics of her tumor but she had had a mastectomy.

    I opted to take arimidex. I was 47 with IDC and LN involvement.


    Everyone is different, this is a very personal decision.

    Cindy

    Did u have side effects and
    Did u have side effects and how r u now?
  • janie560
    janie560 Member Posts: 42
    Options
    mamolady said:

    I had a patient yesterday
    I had a patient yesterday that was 20 years out and never took tamoxifen or and AI. Not sure the specifics of her tumor but she had had a mastectomy.

    I opted to take arimidex. I was 47 with IDC and LN involvement.


    Everyone is different, this is a very personal decision.

    Cindy

    Did u have side effects and
    Did u have side effects and how r u now?
  • DianeBC
    DianeBC Member Posts: 3,881 Member
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    mamolady said:

    I had a patient yesterday
    I had a patient yesterday that was 20 years out and never took tamoxifen or and AI. Not sure the specifics of her tumor but she had had a mastectomy.

    I opted to take arimidex. I was 47 with IDC and LN involvement.


    Everyone is different, this is a very personal decision.

    Cindy

    Just wishing you good luck
    Just wishing you good luck in your decision. Get all of the facts, talk with your oncologist and I know you will make the right choice for you.


    Hugs, Diane