Do I need chemo??

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Godswildstar
Godswildstar Member Posts: 5
edited July 2017 in Chemotherapy - Before, During, and After

Hi all, so I was diagnosed with invasive ductal carcinoma in both breasts, right side in March, left side in April, I underwent a bilateral mastectomy in May and was told that I don't need radiation. I had an oncotype dx test done on the left and right tumors to determine if I need chemo and both came back low scores, so I was told I don't need chemo. The only treatment I am getting is tamoxifen 20mg daily. My friend who also underwent bilateral mastectomy seems to think that my oncologist is not being aggressive enough with my treatment. Her sister died a year ago from bilateral breast cancer. When they removed the tumors, they got good margins on the right, within 3mm, but the left side they could only get within 1mm and initially my oncologist seemed concerned about this but now the ball seems to have been dropped. I am worried about being forgotten about and later finding out that it may have spread. Any words of advice??

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited July 2017

    The thing about the Oncotype test is that it determines whether your particular cancer is responsive to chemo. If your score is low, that means that chemo will not affect your cancer very much if at all. I would definitely discuss your concerns with your medical team so that you feel comfortable with your treatment decisions.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited July 2017

    I was also diagnosed with bilateral IDC. No chemo or radiation for me, either, but I didn't have close margins on either side. I agree that it would be a good idea to discuss your concerns about the close margins with your medical team, or get a second opinion.

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  • carmstr835
    carmstr835 Member Posts: 388
    edited July 2017

    I am not so sure a low oncotype score means your cancer is not responsive to chemo. In my opinion, oncotype score compares the characteristics of your tumors with other people with cancer and how many of them got a reoccurance with and without chemo. They may not be comparing apples to apples, if your cancer and the cancer they are comparing your's to, or the chemo is not exactly the same as your's, it may not be a valid comparison. For instance, a heterogenous tumor is not accounted for and there may be some aggressive tendencies not found in the tissues they used. Also Her2+ isn't considered, neither is extra-nodal extension. I opted for chemo with scores of 17 and 19 for my bilateral tumors that was both Her+ and extra-nodal., even though my oncologist was not recommending chemo. I have since gotten a 2nd opinion and the tumor board supported the second opinion. I am still with the original oncologist and he is fine with my treatment now. I think a 2nd opinion is in order.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited July 2017

    Here is what breastcancer.org has to say about the Oncotype testing: http://www.breastcancer.org/symptoms/testing/types/oncotype_dx

    It says, " The Oncotype DX genomic test analyzes the activity of 21 genes that can influence how likely a cancer is to grow and respond to treatment"

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    Are you ER/PR positve? Probably not HER2 positive or they would have recommended more treatment for sure. What was your stage & grade? How big were the tumors?

    Personally I would get a 2nd opinion but take all your reports with you. If you don't have the reports & surgical notes & tests & scans, get them as soon as possible.

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  • Godswildstar
    Godswildstar Member Posts: 5
    edited July 2017

    My cancer was ER/PR positive, HER2 negative, stage 2 on the right, stage 1 on the left. Right tumor was 3.7cm, left was 1cm. The oncotype on the right came back at 15 and on the left came back at 10. I asked my oncologist about this last Thursday and she said I have a 9% chance of recurrence on the right and a 7% chance of recurrence on the left. I suppose those are good odds? But this past week I'm having terrible pain at the site where the tumors were, especially right side. I was the one that had found that lump due to pain, which they said was unusual but they determined it may have been pressing on a nerve. So how come the tumor and breast are gone and now that very same pain is back? I reported it to my oncologist and she wants to treat it with oxycodone, which I am not too happy about.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    Oh dear - I agree with you about the oxycodone. That stuff throws me for a loop. What about more imaging?

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited July 2017

    My recommendation would be to get a second opinion for your peace of mind from an National Cancer InstituteI Designated Cancer Center -  https://www.cancer.gov/research/nci-role/cancer-centers/find

    It is worth every mile driven and every dollar spent in my book!!  My mom, sister and I were all diagnosed within 3 years.

    We all got conflicting info from our local hospital, but at the Univ of Michigan, it was very clear how we all needed to proceed.




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  • Godswildstar
    Godswildstar Member Posts: 5
    edited July 2017

    Thanks, I think that's the thing is that I just don't have peace of mind and that is what we all need, right? So maybe I should just go for a second opinion.

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  • Godswildstar
    Godswildstar Member Posts: 5
    edited July 2017

    Yes, I feel like some imaging is appropriate just because this is new pain and my surgery was May 3rd.

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