surveillance and follow up

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40wDCISnowIDC
40wDCISnowIDC Member Posts: 45
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I am recovering from a unilateral DIEP flap. (I had DCIS and a little bit of hidden IDC!)  Who is supposed to tell me what follow up tests I should be doing, and when?  My medical oncologist, breast surgeon or gynecologist?  What tests should I ask for?  Mammogram and Ultrasound?  MRI?  My very first mammogram four months ago revealed suspicious calcifications, and eventually I learned I had DCIS.  Only after mastectomy did I learn I also had IDC.  I feel a bit lost about what to do next for follow ups.

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited June 2013

    I went to a breast center for everything and a navigator nurse was assigned to me. She gave me names of surgeons and oncologists after I had my biopsy. The oncologist was the one who followed up with exams and blood tests.

    The surgeon said he would not see me again (after my follow-up visit) unless I had a new problem.

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  • pupmom
    pupmom Member Posts: 5,068
    edited June 2013

    I see my oncologist every 3 months, and my breast surgeon twice a year. I get a CT scan once a year. Maybe having it in node(s) makes them more vigilant. After surgery the oncologist is the primary physician in charge, baring the need for more surgery. Good luck with your follow-up treatments!

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  • MNSusan
    MNSusan Member Posts: 305
    edited June 2013

    I also had DCIS with a hidden 1.1 cm IDC found after BMX.  I'm followed by my oncologist every six months for five years.  She'll do a manual breast exam and blood work.  I'll also see my PS periodically and she'll order MRIs to check my implants.  I'm not sure how it works with flaps - your MO should do the follow up for the IDC.  Good luck to you.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited June 2013

    Those are all valid questions. I agree with the suggestion to see if there is a nurse navigator. Mine was assigned to me through the office of my surgical oncologist, so you could ask at that office, or the medical oncology office.  I think I saw in another thread that you were being treated at NYU. This page has a number for the NYU support services. They should be able to point you in the right direction as well.  (plus look at all those great support services. helpful!) 

    http://cancer.med.nyu.edu/patients/patient-care/supportive-services

    I know this whole process can be confusing and overwhelming, so it's great to know there are people who are willing and wanting to help. Take care!!! 

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