Reduced to low risk & worried about recurrence. Please comment.

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NorthernCanuck
NorthernCanuck Member Posts: 44
edited August 2015 in IDC (Invasive Ductal Carcinoma)

I had what I thought was a pretty fast growing tumour as I found it myself and it was exactly where I wash every shower and it just showed up. It was really quite painful and I cannot believe I would have missed it previously.

I was originally dx'd as grade 2 and stage 2. I actually had two IDC and one DCIS and was told I'd have chemo and radiation as well as Arimidex. A Ki-67 test was performed on the tumour and it was determined that I was now low risk. I now will not have chemo and my radiation has been downgraded to 16 visits instead of the original 25.

Ki-67 is pretty new and I'm not really convinced that mine was slow growing, therefore I'm frightened of recurrence.

I am taking the Arimidex, though.

Any thoughts?

Anyone low risk who had a recurrence?

Thanks in advance for any feedback.

Kari

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  • katcar0001
    katcar0001 Member Posts: 621
    edited August 2015

    Hi Kari - Was an Oncotype DX or Mammaprint test run on the tumor? This is standard practice now for ER/PR+ tumors. Ki-67 is one of the parameters measured in the Oncotype test. If the tumor falls into the low range, typically hormone therapy is the recommended treatment. For high range, chemo and hormone therapy are recommended. The intermediate range gets a little more tricky and that's where the ki-67 or percentage of ER/PR might sway things as well as the grade of the tumor (grade 3 usually indicates need for chemo). Your age may factor in as well.

    There are indeed women on this board who have had a recurrence with a low grade and even with a low Oncotype score. Unfortunately, there seems to be no rhyme or reason who gets a recurrence. :-( I know that is difficult to swallow--it's taken me several months to calm down about it and cancer is never far from my mind. But things do get better.

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  • NorthernCanuck
    NorthernCanuck Member Posts: 44
    edited August 2015

    Yeah, the ki-67 was part of the oncotype test.

    My fear arises from the fact that I did a bunch of research on some of the studies (scientific papers) which this technology has been based on. The primary study that every other paper refers to looked at Breast Cancer cases from 1985 to 2009. All stages and grades were looked at. If there was a sample of the tumour for each of the participants, then they were included and the ki-67 test was done and the test results were compared with the recurrence rate. Thus they derived the current low, intermediate and high risk categories based on ki-67 numbers.

    The problem I have with this is that the people used in the study for the most part HAD both chemo and the increased radiation treatments. So, how do we know that their recurrence rate wasn't already reduced by the chemo / increased radiation? I say we don't know and this is what worries me.

    However, I could not find any examples of studies of people rated by the oncotype, tracked for the requisite 5 years AND THEN determining recurrence probabilities.

    But you are right and I thank you for your comments. I need to let it go and hope for the best (and scream if it is the worst ... lol).

    Again, thanks!

    Kari

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited August 2015

    I'd suggest that you get a second opinion from another oncologist. I did and I'm really glad I did. Good luck!

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  • katcar0001
    katcar0001 Member Posts: 621
    edited August 2015

    Kari - Unfortunately, the TailorX results did not come out in time for either one of us. It will be interesting to see the results! They should be coming out in November.

    Cowgirl13 - We have the same oncologist! I used him for a second opinion and ended up staying with him, even though I have to fly to SF every few months (my former home).

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited August 2015

    I can't say enough about Dr. Wang--just love him. I knew the minute he walked in the door that he was who I would see for chemo. I love the nurses in the infusion room. Definitely worth the trip!

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  • doxie
    doxie Member Posts: 1,455
    edited August 2015

    NorthernCanuck,

    I too would suggest a getting second opinion. It may not differ, but might clarify things.

    The problem with looking at research data that dates pre-mid 2000s is that the effect of aromatase inhibitors is not part of the equation. Before this women were given chemo who gained no benefit from it. Post-memo ER+ women were on Tamoxifen, which is not as effective for them as the AIs, which came out on this century.

    As for radiation, recent research is showing that fewer radiation treatments at higher doses are equal to or better than the old 30+ treatment. I've not drilled down on this because I'm well past rads.

    I see you are in Canada. Did you get an Oncotype score for your tumor? I was grade 2 and on the chemo bubble with size, grade, age, very low PR, and very high Ki67 (40%) until my Onco score came in. Did chemo then.

    Other things to consider. ER and PR percentages and whether you are post or pre meno.

    Hang in there. You'll find the right answers for yourself.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2015

    Preliminary Tailorx results will be announced in September and/or December. Afterwards, the study will continue and those patients will be studied for a few more years.



    If you are premenstrual and under 40, you may also be a candidate for ovarian suppression and an AI, based on the SOFT/ TEXT studies.



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