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Anonymous
Anonymous Member Posts: 1,376

Now I am more confused.... He said that if I didn't do chemo my chance of recurrence is about 12%. If I do do it it would drop to 8-9%. I really don't think that the 3% difference is worth it... He said it would be a mild form of chemo but any way you slice it it is still chemo.. I had Stage 1 Grade 1 no lymph involvement, clean margins.... I am 100% ER+ 65% PR + and HER2 -.

He said it I chose to just do radiation and take AI then that would be a reasonable decision and he will support whatever I decide.. Need to discuss with my husband and children but right now I am leaning towards NOT doing it...

Before I went to the appointment today I told myself that unless there was a big % difference ( more than 10%) I wouldn't do it so 3% is not that big...


I am so confused.... My head is spinning..... Any thoughts?


Thanks in Advance!

Comments

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited April 2016

    I was also stage 1, grade 1 with clear margins. My doc didn't offer me chemo, as the chances of serious side effects from chemo were about 2-3%. From what I have seen over the years, most women with our diagnosis do not do chemo.
    Have you asked for an Oncotype test?
    This might ease your confusion

  • fifthyear
    fifthyear Member Posts: 225
    edited April 2016

    My did not have chemo, only rads and surgery.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    Thanks for your replies..


    I did have an Oncotype test and I came out in the intermediate range of 24......

    I am glad to see that similar diagnosis did not have chemo.... I don't think the 3% is worth the toxicity and the side effects that come along with the chemo, even the milder forms.....

    Thanks...

  • JoniB
    JoniB Member Posts: 346
    edited April 2016

    I am so sorry you received confusing and upsetting results. I would think taking an AI would reduce your risk of recurrence. Although your MO said chemo would reduce your risk of recurrence by 3%, you didn't mention how much taking the AI would reduce your risk. Chemo has many long term side effects and I agree that a 3% improvement does not outweigh the side effects.

  • chef127
    chef127 Member Posts: 891
    edited April 2016

    Nachout,

    I think your making a very wise decision to forego the chemo. I was also offered CMF (chemo lite) when I turned down the ACT chemo. Yes, chemo is chemo!!

    Be comfortable with your wise choice and don't look back. Onco's make lots of $$$$ rx'ing chemo drugs. Your stats are pretty good and your oncodx score means they don't know if the chemo will be of any benefit for you.

    Stay well and confident

    Maureen

  • rrgoods
    rrgoods Member Posts: 24
    edited April 2016

    I had my first visit with an Oncologist 5 days ago. My surgeon ordered the Oncotype DX test. My tumor was less than 1 cm, clear margins, lymph node negative, ER PR positive, HER2 negative. Oncotype score 21. I am post menopausal.

    Without hesitiation the Oncologist recommended Chemo - the usual cocktail - 4 treatments. Chemo only give me a 3% better chance of recurrence. I pointed out to the Onco "Why would I put poison in my body for only 3% gain?" Her response is she recommends Chemo for any patient who Oncotype score is 12 and above.

    Could not get out of there fast enough. Getting a second opinion.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited April 2016

    rrgoods, good on ya for getting a second opinion, preferably at a breast cancer center for a major teaching hospital. Your onco is definitely swimming against the tide and going against the grain recommending chemo for anyone with an ODX score of 12 (!!!) and above. Mine was 16, with the benefit of adding chemo less than 2% over rads & AI alone. My onco not only didn’t neutrally say it was my choice, she actively recommended I skip chemo. Now, with an ODX of 21, it should be your choice--influenced by your age, lifestyle and comorbidities. But automatic chemo for 12 & above? That’s just nuts. It’s a clue as to how she’d manage the rest of your treatment too--seems she’s either driven by profit from chemo drugs, fear of being sued over recurrences (or if she’s employed by the hospital, their fear of litigation), or stubborn insistence on clinging to antiquated protocols (‘because that’s the way we always did it” or even maybe her own experience as a patient). Run the other way. PM me for better treatment teams in IL.

  • sandcastle
    sandcastle Member Posts: 587
    edited April 2016

    Do, It your way! Liz

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