• Stage 1a HER2 positive, Paget's disease

    Asked by HGWWW on Friday, October 5, 2012

    Stage 1a HER2 positive, Paget's disease

    Can anyone tell me, who has had a similar diagnosis, what treatment you were given. I will see oncologist in a few days and am anxious to find out how this stage is treated. I recently had bi-lateral mastectomy and have expanders in place to start reconstruction

    5 Answers from the Community

    5 answers
    • Ydnar2xer's Avatar

      I also am/was HER2 positive, Stage 1a IDC--but w/o Paget's disease. I chose bilateral mastectomy and am now undergoing chemo. My onc recommended 6x of TCH (Taxol Carboplatin & Herceptin) every 3 weeks as well as TH on the weeks in between, then to continue Herceptin every 2 or 3 weeks until my diagnosis anniversary.

      However, I had DCIS nine years ago--did lumpectomy, 35x rads and 5 years Tamoxifen--so I think my onc is being very careful with me so as to avoid another (third?!) time of cancer. He said that with all the precautions we took with the DCIS, I never should have had this IDC...but some people just beat the odds, somehow. Maybe I should buy a lotto ticket?

      Good luck to you in your treatment, HGWWW.

      over 8 years ago
    • nancyjac's Avatar

      I guess I am a bit confused. If you have had a bilateral mastectomy, why would you be getting treatment of Paget's disease of the nipple if your nipples have been removed?

      over 8 years ago
    • HGWWW's Avatar

      nancyjac -
      My nipple was removed during the initial biopsy and apparently they thought there was a clear margin around it. To be on the safe side I opted for a bilater because there were so many things that showed up on the MRI, when they biopsied the tissue from the bilateral masectomy, they realized there was more cancer behind the clear margin, so now they suggested chemo to be sure no cells traveled outside the area to other parts of my body. I will hopefully find out tomorrow what drugs and for how long.

      over 8 years ago

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