Pure 15 cm DCIS with positive nodes anyone??

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roby7
roby7 Member Posts: 55
edited January 2015 in DCIS (Ductal Carcinoma In Situ)

doctors are saying it is a very rare case they are suggesting chemo

I am scared this is overt treatment and also scared that they didn't found invasive cells in my breast just DCIS grade 3 and two positive lymph nodes one with micrometastases and one with isolated tumor

Anyone had this before ??


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  • YJ2012
    YJ2012 Member Posts: 21
    edited December 2014

    Hello Roby - I just sent you a private message with some details . Please check.

    Regards,

    YJ

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  • maidentiredofwaiting
    maidentiredofwaiting Member Posts: 155
    edited December 2014

    Hi Roby7

    I had a similar situation.  They thought it was just dcis but when they did lumpectomy - 9 cm no clear margins, they realized it was much bigger that what showed up on mammogram.  I insisted on an MRI.  Ended up with bilateral mastectomy as I had aggressive high grade cancer and was afraid it would spread.  Had isolated tumor cells and micromet in sentinel lymph node, however they couldn't find the invasive cells in the breast tissue.  After much soul searching and at the advice of multiple doctors we decided to treat it aggressively and I had chemo and now herceptin.  I felt like I did all I could to get rid of it for my own peace of mind.  Everyone has to make their own decision and I hope things get easier for you.  There are a lot of wonderful ladies on these boards who are very helpful.  Best wishes to you!


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  • roby7
    roby7 Member Posts: 55
    edited December 2014

    Thanks yj2012

    Thanks for your message it really helped me

    Check inbox

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  • roby7
    roby7 Member Posts: 55
    edited December 2014

    Hi maidentiredofwaiting

    Sorry to hear that they found it aggressive did they found IDC in the lymph node not breast ???? Wow

    Also why you had 3 combination of chemo why not taxol and herciptin alone ?? Hope you handled the chemo :( my oncologist said it is your decision and when I said I will have chemo but give me another option not taxotere and cytoxen she said taxol 12 sissions alone another oncologist on phone said no to chemo and other one said he recommend it

    I am waiting for another oncologist she will send my tissue to another place. And give me her openion now I am afraid they find aggressive cells praying they are not :-/ happy new year and best wishes to you ! You look great !!!

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  • elud
    elud Member Posts: 2
    edited January 2015

    I have a very similar situation. I had a bi-later mastectomy in Nov. DCIS. No invasion found, but 1 node with micro met and 1 node with isolated tumor cells. The pathologist strongly believes it was biopsy related but can't promise.

    Drs. Suggest taxol + herceptin. It was a tough decision, because all data points to stage 0, but I'm 37 so no one wants to take any chances.

    I start treatment this week or next.

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  • YJ2012
    YJ2012 Member Posts: 21
    edited January 2015

    Hello Elud,

    My doctor came to the same conclusion, micromets in my case was caused by surgery or biopsy related. In my case, I also had 2mm IDC with micromets in extensive DCIS > 6cm.

    On further investigation, they found the 2mm IDC in the same area (slides) as previously biopsied tissue. Regardless they sent 2mm for onco and hormone test. My onco score was 7 , with hormones staus: ER, PR +ve and Her2 –ve and grade 1 tumor with proliferation rate < 1 %

    I consulted couple of oncologist and radiologist based on the node status and 2mm IDC, no one recommended further treatment other than Tamoxifen. I hope to god, this will keep me safe though at time I wonder if it is enough.

    I wonder why taxol + herceptin were suggested for you. Did they check hormone status on your micromets?

    If I can be of any help,please reach out. Good luck.

    YJ

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  • roby7
    roby7 Member Posts: 55
    edited January 2015

    Hi Elud and Yj2012 ,

    How are you? I met with 3 oncologists one said it is my call and there is no right or wrong and the other two doctors remommended chemotherapy I notice that you had double mastcotmy but i didn't and my others breast is high risk I think this one of of the reasons they recommended chemo I will strat chemo at Thursday so scarred

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  • DoggieBytes
    DoggieBytes Member Posts: 100
    edited January 2015

    Hi Roby7,

    I can't help with your specific diagnosis but I can understand the fear you feel about chemo.

    I found that trying to stay calm was what worked for me. When I started feeling really frightened I would think about just staying as calm as I could. Sometimes I did cry at first and if you do that's o.k. too. Let some of the emotion out and then find your way back to calmness.

    A friend who had ovarian cancer gave me a tote bag to bring to each chemo session. I would pack some healthy snacks, books, word puzzles and most importantly something from a loving friend or family member. It can be a special card, or a small figurine, or wear a peice of jewelry given to you by someone special in your life. I would pick which item to take the night before each chemo session. I would take the item out and place it on the little tables that were there or counter next to the chair.

    Surround yourself with reminders of love and support. It will help protect you from the fear.

    I wish you the best. (((((Hugs)))))

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  • elud
    elud Member Posts: 2
    edited January 2015

    YJ2012,

    I should have also added that the pathologist stained my micromet (not a common practice) and it was HER2+. That was key as to why I am getting chemo.

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