second thoughts and oncotype worries

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heybella
heybella Member Posts: 6
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I FINALLY got my oncotype score this week and I had been mentally preparing myself for weeks about  what to do if it came back in the intermediate range.

 It came back at 15 and I was so shocked- - my doctor handed my a prescription for tamoxifen and off I sailed out the door. 

 I had a mastectomy in November (I 'm BRCA 1 and the MRI showed some some DCIS - turned out there was lots of DCIS and a 1.5 cm tumour)  so no radiation needed.

 Now I'm home and worried. Maybe I should have asked about chemo- I know my tumour is strongly positive for ER and PR but then I read about women who seem to have a similar profile as me who develop a recurrence, or metastases.

 Should I go talk to my oncologist again? (I'm not scheduled to see her for another 6 months). The oncotype shows a 10% chance of recurrence with tamoxifen. Should I just accept my (relative) good fortune? 

 Thanks!


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  • mdg
    mdg Member Posts: 3,571
    edited February 2013

    If you have concerns, you should talk to your MO. I have a similar dx to yours but I am BRCA negative.  I had an oncotype of 17 but did chemo but I had LVI present and that was a driving force for my decision on chemo.  I think you should get your questions together and see if you can talk with your MO.   There are so many things to consider.  

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  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2013

    Agree with mdg if you dont feel comfortable about your treatment plan you def should talk to your ONC but I think 15 is below the intermediate range so maybe thats why no chemo. Mine was 11 and my ONC said no chemo but had 33 RADS treatments. They were a piece of cake compared to chemo. I have read posts where ladies had low Oncotype scores and still had chemo maybe because there are other factors to consider other than a low score. My bc is stage 2, grade 1 so my tumor was not very aggressive and not all that large. There is no one size, fits all but dont second guess yourself. I am sure your ONC can clear things up for you. diane

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    You don't mention whether you are pre or post menopausal.  I had a Oncotype DX score of 15 and was given the choice of ovarian suppression due to being pre menopausal.  Likewise, if you are BRCA 1, I think surveillence should be discussed further with regard to ovarian issues.  Nonetheless, if you have concerns, you should meet with your physician or get a second opinion.

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  • ginger2345
    ginger2345 Member Posts: 517
    edited February 2013

    Sid,

    I haven't followed your postings so maybe you've considered this: onc's have different opinions on when to treat with chemo and other drugs as well. So you could get a second opinion, esp being BRCA1 positive, I think that would help with peace of mind. And also approaching your onc again could help.

    I just got my score on Friday and I'm not BRAC1 positive and had a score of 20 and onc recommended no chemo as more harmful than the 3% reduction in risk I would get. (13 down to 10) So I went on Arimedex last night. My onc said I needed to decide on the chemo before starting any anti estrogen as they put cancer cells to sleep and if you do chemo you get the best efficacy with the cancer cells awake.

    It's hard to accept even a 10% risk, but the chemo creates other serious risks as well. Good luck with your decision.

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  • firehorse
    firehorse Member Posts: 1
    edited February 2013

    Can I please just say first that if I had not discovered this discussion board I would not know anything useful.  Thank goodness for all of you!

    Biopsy discovered single invasive ductal tumor only 4 mm, grade 1 ER100% so went with lumpectomy and radiation followed by tamoxifen.  I had to request the surgical pathology report and when I received it discovered the cancer was multifocal with a grade 3 DCIS as well.  After reading your posts will look into the oncotype report, expecially since, even though I found the first tumor and pointed them straight to it, they were never able to find it by mammogram, ultrasound or MRI, which inspires very little confidence in the diagnosis.  Any and all suggestions are welcome because if I don't know exactly what to ask I am clearly not going to get any information at all.

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