Clinical trial for Pre menopausal Women who are ER+, PR+ to compare tamoxifen with ovarian function

Astrid
Astrid Member Posts: 17
edited March 2014 in Breast Cancer #1
I am contemplating entering a clinical trial to compare ovarian function suppression (by triptorelin, oophorectomy, or ovarian irradiation) in combination with tamoxifen vs ovarian function suppression in combination with exemestane vs tamoxifen alone in patients with endocrine-responsive breast cancer in treating Premenopausal Women with Hormone-Responsive Breast Cancer.

I am 48 years old and still Premenopausal. I am ER+, PR+ and HER2+ (3.4). That combination is only about 15-20% of all breast cancers. The clinical trial does not specifically deal with the HER2+ aspect of my cancer. Susan Loves breast book says that tamoxifen is not very effective with HER2+ cancers, so I did some web research and have seen the following: The tumors most resistant to tamoxifen are those that contain not only estrogen receptors but also an overabundance of another growth factor receptor called HER2/neu and a molecule that activates the estrogen receptor called AIB1. Other studies suggest that some estrogen receptors may be located in the membrane, close to HER-2. “Tamoxifen binds to the estrogen receptor in those cells and instead of antagonizing it, it activates it. It acts like estrogen”.
I am scared to start tamoxifen alone because of what I read above and I am not aware of long term treatment for Premenopausal women other then tamoxifen. I am also scared of ovarian function suppression because my husband and I still have great sex and I do not want my drive to be decreased and this WILL happen. What do I do?? Go for the trial and leave the decision to fate or the lord? Do nothing and risk reoccurrence?? Do the standard treatment and risk a reoccurrence??

My sister died of BC at 40 and my grandmother died of BC at 53. I want live long then both of them. My sister died before they tested for HER2 and I would bet that both my sister and grandmother were ER+, PR+ and HER2+

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    Astrid,
    Lucky you! I was perimenopausal at your age. Now, surgical postmenopausal. Complete hyster with oophorectomy. I was ER and PR positive, but only partial HER2 (FISH showed negative). So, I have all options open...BUT chemo made me osteoporotic...so, my onc and I have decided to use the Tamoxofen for at least a time until my bones get better...
    For your HER2, did you do the Herceptin dance?
    BUT I can tell you one thing....MY sex drive HAS NOT diminished...(sorry for the bluntness) after my surgery (except during recovery...I had colon cancer, too). I admit, I need some lubrication (I sound like a car...sigh) because I don't have my parts any more...but I DISAGREE with your statement about decreased drive...
    AND, please don't get me wrong, but you ARE getting near to 'the age', so all the symptoms of a surgical menopause are going to start creeping up here soon anyway.
    Sorry, you can yell and scream at me if you want, but that's my take...
    Hugs, Kathi
  • krisrey
    krisrey Member Posts: 194
    #3
    Hi,
    This subject interest me now because I am also premenopausal but I have been on tamoxifen for 4 months shy of 3 years. At first it was thought that I would soon be post menopausal and at the 3 year mark with tamoxifen they would switch me to one of the better drugs. However, I fooled them all with the return of my period after 15 months, then stopped again for 6 or 8 months, now it has returned again. Seeing that I am also ER PR + and HER2+ I am worried that tamoxifen is enough. So I have been trying to decide if I should have the hysterectomy or not. I have had memopausal symptons already, hot flashes, dryness...etc but with the return of my period they all totally went away. So as of now I have no idea what my status is. I was not aware of any clincial trials that you speak of, can you give me more information.
    Also, those of you that have gone through "surgical" menopause, can you tell me about the recovery time and the "instant" menopause?
    Thanks
    Kristen
  • Astrid
    Astrid Member Posts: 17
    #4
    KathiM said:

    Astrid,
    Lucky you! I was perimenopausal at your age. Now, surgical postmenopausal. Complete hyster with oophorectomy. I was ER and PR positive, but only partial HER2 (FISH showed negative). So, I have all options open...BUT chemo made me osteoporotic...so, my onc and I have decided to use the Tamoxofen for at least a time until my bones get better...
    For your HER2, did you do the Herceptin dance?
    BUT I can tell you one thing....MY sex drive HAS NOT diminished...(sorry for the bluntness) after my surgery (except during recovery...I had colon cancer, too). I admit, I need some lubrication (I sound like a car...sigh) because I don't have my parts any more...but I DISAGREE with your statement about decreased drive...
    AND, please don't get me wrong, but you ARE getting near to 'the age', so all the symptoms of a surgical menopause are going to start creeping up here soon anyway.
    Sorry, you can yell and scream at me if you want, but that's my take...
    Hugs, Kathi

    To kathiM: I am not going to yell and scream, in fact you made me feel better. I am glad your sex drive HAS NOT diminished. If I go on the trial, I will do the injections not surgery. Yes, I start the herceptin dance in two weeks. I was also on a trial for my chemo and the protocol was Taxol first, then radiation, then herceptin. I just finished radiation.

    To krisrey: The trial I am contemplating is: IBCSG 24-02, you can do a google search for more information. It is available in many states.
  • Susan956
    Susan956 Member Posts: 510
    #5
    Astrid,
    You should try the Herceptin treatments for sure. The Herceptin (taken for 1 year) reduces the risk of reoccurrence of HER2+ cancers by 50% just by itself. But make sure that they keep a close watch on your heart (my Doctor did Echocardiagrams) routinely. I could only finish about a 6 month course of the treatments but most people can do the full year.

    I don't know about the trial that you were talking about... But I have been Memopausal for about 15 years... and took HRT.. and the rest of the story is that my cancer was ER/PR+. So no more HRT for me. Other than bad Hot Flashes... everything else has been fine. I still have my sex drive... and enjoy it.... a little dryness... which Replens solves.... So going memopausal isn't nearly what the old wife's tales would lead you to believe....

    So Take Care... God Bless.... and let your heart give you a decision that will work for you.

    Susan
  • sunshyne1963
    sunshyne1963 Member Posts: 1
    #6
    Astrid said:

    To kathiM: I am not going to yell and scream, in fact you made me feel better. I am glad your sex drive HAS NOT diminished. If I go on the trial, I will do the injections not surgery. Yes, I start the herceptin dance in two weeks. I was also on a trial for my chemo and the protocol was Taxol first, then radiation, then herceptin. I just finished radiation.

    To krisrey: The trial I am contemplating is: IBCSG 24-02, you can do a google search for more information. It is available in many states.

    Hi,
    I just joined this website today. I started the IBCSG 24-02 or SOFT clinical trial on August 17, 2005. I am 43 and was assigned to the third arm of the trial. I am having the monthly shots for ovarian suppression and take a daily dose of exemestane. Personally, I have had no problems at all sexually. I haven't experienced any of the dryness that is listed as a potential side effect. So far, so good. Have you been assigned an arm yet?

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