RxPonder trial- Oncotype for Node Positive? Need help!

Ladyhoo
Ladyhoo Member Posts: 29
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I had UMX in September, ILC 9cm, Grade 2, low KI-67 (8%), also Pagets. 1/30 nodes, ER+, PR+, HER-. I am 45, pre-menopausal. My oncotype is 16, which on the graph for node-positive has an equal recurrence rate between Chemo+Tamox and just Tamox. (remember this is the node-positive study, so based on preliminary data). So I just got randomized and put in the no-chemo group....and now I'm terrified!! It feels so strange to bypass chemo with such a large tumor and a positive node. Now I am panicking and trying to get a second opinion. On the other hand, I fully appreciate that I don't want to over-treat with chemo. But also feeling like I want to throw everything at it. But hard to now pull out of study and go with standard of care, which includes chemo, when I could have had a pass. So in essence, I'm torturing myself.

Anyone out there with any feedback, in any direction? I appreciate it!

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Comments

  • momof3boys
    momof3boys Member Posts: 896
    edited October 2012

    Wow! I'm 44, diagnosed at 43.... Node negative, my Oncotype score was also 16. My MO was on the fence re: chemo, but we decided to do it based on a few reasons: my "young" age, my tumor was just over 4 cm, her group uses "11" as a cutoff point for Oncotype scores and chemo, and because I had opted to do everything as aggressively as I could (had BMX with reconstruction).

    Get a second opinion. It's so hard to know what is the right decision. But, do what is best for you, and don't feel bad about the trial / study if you decide to do chemo.

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  • bevin
    bevin Member Posts: 1,902
    edited October 2012

    Hello, there is nothing that requires you go through with the trial.  You can always pull out of it. It's your body and you pay the doctors; just remember they work for you.  If you're not comfortable, please make the choice that will make you feel comfortable.

    I'm similar to Momof3, I'm 45 year old, but I didn't have chemo. I had an 11 Oncotype  and was offered chemo but declined. 2 Oncos felt comfortable with me not taking it and 1 suggested I do as I am "young" for BC. Honestly, I wish I had just done it. . I think my mind would be more at ease.  But that's me. You need to do what's right for you.

    Good luck to you

    Hugs

    Bevin

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited October 2012

    there are risks if you do, and if you don't.  For me, the question was-- could I sleep at night with whatever decision I made?  The answer came quickly and I did the chemo--that was almost 4 years ago and I have slept well ever since.  You know yourself best....

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  • Ladyhoo
    Ladyhoo Member Posts: 29
    edited October 2012

    Thanks for the responses. You all hit on my exact worry- how to sleep at night, feeling i did all I could, but not wanting to take chemo that I don't need. My onc is helping to expedite a second opinion. If I had known they would do the leg work, I would have asked sooner!

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  • Racy
    Racy Member Posts: 2,651
    edited October 2012

    My tumour was 2.2 cm with isolated tumour cells in 2 nodes. I did chemo TAC x 6 as my docs wanted to do everything possible.



    It wasn't too bad apart from the hair loss. You can look into using cold caps (on this site) to keep your hair.

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