Diagnosed with Dcis but now one node positive

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Anonymous
Anonymous Member Posts: 1,376
edited October 2017 in Just Diagnosed
Diagnosed with Dcis but now one node positive
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  • Bannerlady
    Bannerlady Member Posts: 3
    edited October 2017

    Hi just wondering is anyone in the same situation had lumpectomy and 2 nodes removed on 9th Oct my breast cancer surgeon came as I was in theatre ready for lumpectomy to say there was something in one node so she would take that with main node. What really annoyed me was she asked me about 3 times had I any other questions she was semi gowned and ready to start op. I couldn't even think I was so focused on getting op over with, but now I realise I have a lot to ask. I am presuming this is not just dcis now and the radiation suggested will now be chemo, should I be looking for a full body scan to see if it has spread anywhere else? I am oestrogen negative but saw her3+ on my chart but was never explained. I am worried the margins won't be clear, also did the vaccum biopsy done middle of August cause breakout to nodes, or is there another lump they haven't found yet. Sorry don't have all the correct terminology. Anyone else been here and have you any questions I should ask would really help. Thanks to all ladies on this site you really do help terrified newly diagnosed

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited October 2017

    Hi Bannerlady,

    I can't believe it's been 12 days since your surgery and you don't have any information yet. I'd be freaking out! My husband was at all my appointments and surgery so he could write down everything the dr said. Do you have someone who could do that for you at your next appointment? When is your next appointment?

    I'd guess the first question is: was the tumor still DCIS or had it become invasive? How many lymph nodes were removed and how many were positive? In surgery the dr's take your sentinel nodes and that can be anywhere from 1 to 3, depending on where the dye goes. If they find a positive node they will take more of the Axillary nodes to see if any more are positive. At surgery my nodes looked negative but the report said I had isolated tumor cells in the node. My dr said they didn't know anything about the cells. They could be dead cells from the biopsy and my node was still considered negative because of such a tiny amount.

    Because you had a lumpectomy you will still need radiation but you may be able to avoid chemo. If your tumor was IDC and you had less than 3 positive nodes your dr can order either an Oncotype test or a Mammaprint. Those tests look at the makeup of your tumor and determines if chemo provides more benefits than risks.

    Are you in the US? If so you can get a copy of your reports. There's a great article on this site on how to read your reports and if you still have any questions on terminology or what it all means going forward you can ask us all here.

    Sorry you're in such a confusing time. Hopefully your nodes were negative and you can get going on radiation and get this all behind you.

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  • stephincanada
    stephincanada Member Posts: 228
    edited October 2017

    So sorry to hear that you are going through this. If it is any comfort, I found the diagnosis process to be the most emotionally difficult part of the journey. I felt better once a treatment plan was in place.

    To answer your question re: full.body scans. I would ask for them. I was also hormone negative, her2 positive. My nodes were not affected but I did have lymphovascular invasion. My Radiation Oncologist told me that because it is possible that the cancer has spread, she would order the scans for me. I am grateful that she did. If it has spread, you take Herceptin for the rest of your life, whereas if there has not been metastasis, the standard treatment is Herceptin for one year.

    You should ask your medical oncologist about taking Perjeta as well. The APHINITY study suggests that you would benefit from it because there is nodal involvement, and you are hormone receptor negative.

    Good luck

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  • stephincanada
    stephincanada Member Posts: 228
    edited October 2017

    One more thing to add: please feel good about your prognosis. The drugs available to fight HER2 disease are incredibly effective. Watch the movie "Living Proof" about the development of Herceptin, if you can. You just have to get through treatment. It is no fun, but tolerable.

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  • Bannerlady
    Bannerlady Member Posts: 3
    edited October 2017

    Thanks for your replies feeling more positive now, bcs took sentinel node and one other that showed something when they did the nuclear dye and scan. She didn't mention any other auxiliary nodes. I am worried that she might recommend a mx, but leak to node must be another tumour which never showed on any of the mammograms. Should I be happy to let the radiation kill it, or wonder for years to come is it still growing? I am not in the US, but will look for copy of report this time, last time read my file on way to wire insertion lol. I have downloaded how to read your report thanks for that. Have appt for Thursday will start writing questions soon. Thanks for advice on drugs have looked them up and it's very positive the results. Will definitely have them in my questions for discussion. Thank you both.

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