Diagnoses changed

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At the beginning I was diagnosed with lobular breast cancer had an MRI showed it was 5.3 cm and I had a lymph node that was enlarged at 6 mm but I’ve had the swollen node for 20 years since the last time I had a lump removed which was benign

lymph node would change in size over the years small get big when I had my period so my surgeon wasn’t really that concerned because it didn’t show up bad I guess on imaging, so since my surgery I now have a breast tumour that’s 4 cm now they’ve called it Ductal NOS because it has lobular features and Ductal features and not enough to decipher for sure which one it is so it default it to ductal nos and my lymph node was 3 cm full of tumour and that was the only one he took out because the dye didn’t go to any other one so he doesn’t know if the tumour blocked the dye and if It blocked the cells from leaving it also so now I just think what do I trust everything’s changed

Comments

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited December 2017

    Hi crhts. So sorry you're here and have to figure out how to get through the treatment maze. Up until your surgery everything the dr's tell you is just their best guess, based on scans and tests. Now, after surgery you have the facts and can go ahead with treatment. What have the dr's discussed for treatment? Do you know if you are ER/pr positive or negative. How about your Her2? Those are important things that play into treatment decisions.

    Try not to be discouraged because some of the things you were told early on have changed. That's happened to most of us. Just take a deep breath and kick his cancer thing to the curb.

  • crhts
    crhts Member Posts: 5
    edited December 2017

    Hi Luckynumber47

    I’ve already had a bilateral mastectomy with reconstruction. I am ER+ PR+ HEr2-Had my echo today and routine CT Sunday. My surgeon is trying for chemo to start next week.

    Thank you for responding

    Crht

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2017

    It is a shock when the pathology changes from what we thought. Don’t hestitate to get a second opinion if you need it. Now is the time to get as many questions answered as possible.

    I’m sorry for the nasty surprise. No fair getting kicked just when you’re trying to recover from major surgery. Take one step at a time. Be good to yourself. Ask for meds to help emotionally if you need them.

    I’m sorry you are going through this. Sending you a gentle hug. Hang in there.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited December 2017

    I have never heard of Ductal NOS. I had IDC with Lobular features, sometimes called IDC-L. It is fairly common, I have been told. This type tends to spread to only 1 node (about 50% of the time) and is less likely to spread beyond the breast and node. At least that is my understanding. There are many studies online if you are interested.

  • crhts
    crhts Member Posts: 5
    edited December 2017

    Hello Letsgogolf

    The original diagnosis from the core biopsy and the sneaky behaviour of the cancer stated it was Lobular but the final path basically said it was both, so the way you say IDC with Lobular features sounds like it. The only sentinel node was 3cm. It was also the same node I have had enlarged for 20 years. I’ve had a bilateral mastectomy and reconstruction. I am ER+ PR + Her2-

    Just waiting for treatments

    Crht

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