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Nulyte
Nulyte Member Posts: 62

Ok so before surgery MO swore to me that the Mammaprint would be the defining key in my treatment. So it was done and it came back low for reoccurrence and non responsive to chemo and highly responsive to tamoxifen. So I went ahead
and had the BMX . Today 1 week post op she has pathology and tells me , oh yeah the Mammaprint can't be right it has to be wrong so we are scheduling your chemo cycle and it will be AC-T. I am beyond mad. I had expressed to her if I needed chemo I wanted it done before surgery to assess its effectiveness. Now tumor gone 7/16 nodes positive but no skin, chest wall involvement and all clear negative margins.
I told her no I just want tamoxifen and that should be my choice. A new study published 11/10/16 states even high clinical risk with low genome risk only gain 1.5% benefit from chemo. She says well I don't believe Mammaprint is correct. She won't send oncotype dx now because of 7 nodes and I'm at my wits end. I've trusted her and followed her suggestions but just don't feel that her just saying she thinks Mammaprint is wrong doesn't sit with me....
I asked her if I do chemo now what do we base its effectiveness on? She said nothing we won't know if it works .... I'm so frustrated......

Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited November 2016

    Get a second opinion.

  • Nulyte
    Nulyte Member Posts: 62
    edited November 2016

    Unfortunately she was my second :( .... I think after the holidays I will call Mammaprint and ask my own questions and then go with my gut. It's our livesand our choices and they need to respect that, right?

  • Kicks
    Kicks Member Posts: 4,131
    edited November 2016

    Then go for a 3rd, 4th or more if you need to.

    I know nothing about Mammoprint or Oncotype - for me the only option was neoadjuvant from the 'git-go'. There are many here who do have knowledge about them though.

    I do know that it is more common to do adjuvant Chemo for most rather than neoadjuvant, except for IBC, though neoadjuvant Chemo is niw being done more often for the other types.

    You might ask to speak with another member(s) of the Tumor Board at the Facility for clarifaction/explanation.

    Yes - you (any of us) need to be respected with our choices. Also needs to have better communication.

    As I said - I know nothing about Mammopri t or Oncotype but there are others who do - will probably be here before long.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    I never had Mammaprint or Oncotype either because I'm HER2+ so I was going to do chemo from the get-go. But, did your MO say WHY she thinks Mammaprint is wrong? It's interesting that you had Mammaprint done before surgery. Did MO think that the sample sent was unrepresentative of your cancer? Yes, you may have to get another opinion. Yes, it's your choice. I would say, though that 7/16 positive nodes would give me pause. That does suggest that your cancer was on the move (though maybe it didn't get very far). Personally (and I'm not you or advising you), I would probably do the chemo.

  • Nulyte
    Nulyte Member Posts: 62
    edited November 2016

    She has pushed for chemo from the get go. The Mammaprint test results stated it's resisitant to chemo so I don't know why I would put my body thru that but it's 93% responsive to endocrine therapy. She tends to manipulate the conversations the way she wants. She was already told by the cardiologist Adriamycin is not for me, yet she wants to do AC-T. With the new study published even high nodal involvement and tumor size only had a 1.5% increase in Overall Survival and she thinks 1.5% is a big deal - I don't .... I guess I'm more upset in how she's handling this and maybe another opinion is in my future. As far as the nodes only node 1 was "enlarged" , the rest were regular size I did request a second pathology read to be sent to John Hopkins. The surgeon also stated she had clear margins.


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    Oh, I see! Yes, definitely get another opinion. I realize that you're on your second MO, but you need to have a doctor you trust, not someone you suspect is manipulating you. And, yes, if your cardiologist has recommended against AC-T, then I'm not sure why your MO would ignore that recommendation. You only have one heart! Ugh. I'm so sorry you're going through this.

  • muska
    muska Member Posts: 1,195
    edited November 2016

    Hi Nulyte, I am sorry you are in this situation. If I recall correctly mammaprint is only used for patients with no more than 3 positive nodes. This test may not be a good predictor in your case because you had more than 3 positive nodes. Can this be the reason why your MO changed the plan? I agree with the advice your already received to get a 2nd and a 3rd opinion if needed and also speak with your MO again. She recommended AC+T but I am sure will find other options once she knows more about your heart condition.

    I was clinical stage 1a before surgery (very small tumor and no signs of nodes involvement on imaging.) After surgery, was re-staged 3a. I didn't have mammaprint or oncotype tests done because they are not reliable predictors for women who are at a more locally advanced stage, i.e. have more than 3 nodes involved. When I asked my MO about oncotype she said she would advise chemo no matter what the oncotype says, so no point in ordering it.

    I understand you don't want chemo and it is your right to refuse it should you decide to do so. It is your MOs obligation to advise you on the standard of care that is appropriate for your case. If you feel she is not taking into account your individual situation like age, other conditions or anything else that might matter talk to her about this.

    Best of luck with whatever decision you make!

  • mellee
    mellee Member Posts: 434
    edited December 2016

    Nulyte, I understand your reluctance to do chemo, but from what I understand, the Mammaprint study you're quoting was looking at people with only 1-3 positive nodes (I'm assuming you're referring to the MINDACT results published in the New England Journal of Medicine). According to Agendia (the company that does the test), when more than 3 nodes are positive (or the tumor is larger than 5 cm), Mammaprint is no longer a reliable tool for making treatment decisions.

    If you'd like to dig deeper, call Agendia's customer service and request a physician consult (it's totally free). I just did this today and they went over my results in detail. You can ask them your questions and they should be able to give you solid answers. The number to call is (888) 321-2732.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited December 2016

    I have really thought about you situation, because it could happen to any of us. First, I understand the disappointment with positive nodes. Mine were negative, but I was prepared for anything. In all the studies that I have read, if mine would have been node positive, I would have done the chemo. I am very conservative and pragmatic when it comes to taking drugs I don't need. (Pharmacy School.... ya gotta love it) You did not mention any meeting with radiology because I assume you would not get radiation treatment with dcis. If for any reason there is any IDC in either breast that went undetected, the chemo would take care of that. Where there is DCIS, there can be IDC. How does that Catholic prayer go, "of all that is seen and unseen...." I would caution about shopping for the answer you want, you might just really need the answer you need to be healthy. MO's do have a way of encouraging chemo. But when the risk is small, they usually do not push the subject. When faced with a situation like this, I say to myself and God, "please help me see what I need to see, to make a good decision."

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    Nulyte, she must think having 7 positive nodes makes the mammoprint results invalid. I would question the treatment plan especially if you find she is not going with the cardiologist recommendations. Tell her point blank look this isn't making sense I feel you are not taking into consideration my heart issues. If you get push back go to someone else.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited December 2016

    Did you get back a detailed pathology report? That can be helpful in weighing the pros and cons. There are tools on the internet that weigh in survival factors that might be worth having a look at.

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