ER Negative and Arimidex?

JuJu54
JuJu54 Member Posts: 8
edited March 2014 in Breast Cancer #1
Ladies, I would appreciate your advice and experience. I was diagosed with BC on April 2, 2010 - PR-, ER-, and HER2+. Had a lumpectomy, finished chemo on Oct. 7, and rads on Dec. 16 - YAY! Will be continuing Herceptin treatments until July, 2011. My onc (who I LOVE) spoke to me about going on Arimidex. Even though I am ER negative, I have a family history of BC - sister and first cousin who were ER+. My onc said that going on Arimidex may help prevent a future, ER+ BC for me. I am hesitant to go on Arimidex - worried about side effects - and not knowing if there are any studies that show it prevents BC in individuals with family history of ER+ BC. If my BC was ER+ there would be no question - I would go on it without question. Have any of you gone on Arimidex that were ER-, but had a family history of ER+ BC? Are there any studies showing taking it is effective when there is a family history? My onc brought it up as an option - not something he is strongly recommending. Appreciate others experiences/thoughts. Thank you!

Comments

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #2
    The tale of 4 sisters
    I don't know if my info helps you or not as none of my family has ER negative.

    However, I have a terrible family history. Two of my three sisters and myself (4 sisters including myself altogether) have had breast cancer and are ER+. The sister who has never had breast cancer tried tamoxifen prophylactically for about a year, but couldn't tolerate it. She then took aromasin (an aromatase inhibitor like arimidex) for 5 yrs to try and prevent breast cancer. She had no side effects at all.

    She is now 59 and so far, no cancer. And to put things in perspective, I was 33 when I was first diagnosed and my other 2 sisters were 40 and 41. So, in your rare and unusual case, it might be worthwhile to consider arimidex to prevent ER+.
  • roseann4
    roseann4 Member Posts: 992 Member
    #3
    CypressCynthia said:

    The tale of 4 sisters
    I don't know if my info helps you or not as none of my family has ER negative.

    However, I have a terrible family history. Two of my three sisters and myself (4 sisters including myself altogether) have had breast cancer and are ER+. The sister who has never had breast cancer tried tamoxifen prophylactically for about a year, but couldn't tolerate it. She then took aromasin (an aromatase inhibitor like arimidex) for 5 yrs to try and prevent breast cancer. She had no side effects at all.

    She is now 59 and so far, no cancer. And to put things in perspective, I was 33 when I was first diagnosed and my other 2 sisters were 40 and 41. So, in your rare and unusual case, it might be worthwhile to consider arimidex to prevent ER+.

    What a difficult decision!
    I think he may have a point. One of my good friends had one type of bc and 2 years later had another type. By the was she is still cancer free after 17 years. I have been on Arimidex for almost 2 years without any obvious side effects. Don't you hate all the decisions!

    Roseann
  • SIROD
    SIROD Member Posts: 2,194 Member
    #4
    A second opinion?
    In your case, I would seek a second opinion from a larger cancer center. I am certain your oncologist could help in a referral.

    I have heard of ER/PR+ mutating to negative. I haven't read that it works the other way around. Aromatase Inhibitors are serious drugs. Even though one might not feel side effects, doesn't mean they are not happening in your body.

    There is a web page on the internet that you can ask an expert a question and they will reply. The site is out of Johns Hopkins Breast Center and the person who usually replies is Lillie Shockney, R.N., M.A.S.,. If she can't answer your question, she forwards it to an oncologist who will reply to your inquiry. The link is for metastatic cancer. However, in your case, I do believe it fits there from a family history point of view.

    Here is the web page:

    http://www.hopkinsbreastcenter.org/services/ask_expert/metastatic_breast_cancer/


    Good luck to you,

    DORIS
  • JuJu54
    JuJu54 Member Posts: 8
    #5
    roseann4 said:

    What a difficult decision!
    I think he may have a point. One of my good friends had one type of bc and 2 years later had another type. By the was she is still cancer free after 17 years. I have been on Arimidex for almost 2 years without any obvious side effects. Don't you hate all the decisions!

    Roseann

    Thank you all for your
    Thank you all for your responses. They are helpful. It is a difficult decision and I am so tired of making decisions! :-) I will check out that website as well. Thank you again.
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #6
    JuJu54 said:

    Thank you all for your
    Thank you all for your responses. They are helpful. It is a difficult decision and I am so tired of making decisions! :-) I will check out that website as well. Thank you again.

    I just want to wish you good
    I just want to wish you good luck with your decision. I am ER and PR + and HER2-


    Hugs,

    Diane

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