Second opinion on Onc DX of 22

4bethann
4bethann Member Posts: 34
edited June 2014 in ILC (Invasive Lobular Carcinoma)
Yesterday I had the second opinion with the local very experienced onc on my oncotype dx score of 22. He said everywhere it mattered my numbers were on the fence- and that it was a very difficult decision. It doesn't help that the adjuvant! Online program has disabled the oncotype version for updating!

He worked the numbers of well over 20 minutes, using many different chemo regimes and so forth, but couldn't get more than 3% benefit as far as reoccurrence goes. He said chemo would be an absolute benefit without a doubt. After much deliberation and 45 minutes of overall discussion he said that given my sensitivity to drugs and heart arrhythmia, he would not recommend chemo for me because the risks involved in my case might not outweigh the benefits. It was comforting to me because that is the decision I had made on a personal level.

A tough choice indeed, knowing whatever comes in the future I must remember I made the best decision given my particular circumstances and stand by it. I just hope I never have to go there!


He said he hopes we soon get to a point in cancer research where we can pinpoint those 3 people out of 100 who would benefit, and target them.

My best percentages come from the Tamoxifen and A.I. treatment, so ultimately that is the choice I have made- 2 years Tamoxifen followed by 5 years of AI- standard for treatment at Dana Farber where my main onc is.

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Comments

  • nash
    nash Member Posts: 2,600
    edited August 2008

    Glad the 2nd opinion went so well. Sounds like you came up with a very reasonable course of action.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Best wishes to you...being comfortable with your decision is SO IMPORTANT. ...your prognosis is very good!

    I am so thankful for Tamoxifen and the AI's with our type of dx. Be well!

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  • Gitane
    Gitane Member Posts: 1,885
    edited August 2008

    That second opinion really worked for you.  You have every reason to feel good about your decision.

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  • dianaon
    dianaon Member Posts: 31
    edited January 2009

    hey- just posted on "chemo for ILC"

    I had an 18, but my tumor was 2.6cm's- also chose TAM only; just picked up the RX. I feel really good, and that I made a rational choice, and the best one I could given the info I had. I do understand the ambivalence. In one respect, I feel better, having made the choice on my own, as of the two Onc's I consulted, neither could look me in the eye and say they thought chemo was the best choice.  

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  • Seabee
    Seabee Member Posts: 557
    edited January 2009

    Your decision seems completely reasonable to me, and chances are you'll be happy with it in both the short and long term.  Besides that, you've found a very good oncologist! 

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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2009

    I was a 20 and opted out of chemo.  My onco said the benefits would still give me side-effects that are irreversible.

    I know many gals opt for bilateral mast. and opt out of all other treatment and do well....others shoot everything at the cancer and it still comes back.  I agree that there is no way to know right now.

     I've also read that chemo is less effective for ILC, but then I read that tamoxifen is less effective in ILC as well....

    Maybe in a year or so we will have other options.

    Best to you!

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