• 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
    • teddyfuzz's Avatar
      teddyfuzz (Best Answer!)

      Hi HGWWW. If I undestand correctly, Paget's disease involves the skin of the nipple and the areola. Some people with Paget's also have tumors within the breast. The treatment that your oncologist recommends will depend on a few things. Sometimes with Stage I cancer, you can get away with just removing the cancer (surgery). I was also Stage I but my doctor recommended chemo in addition to the surgery because the tumor markers indicated that my cancer was a little more agressive. HER2 positive means that the cancer tested positive for a protein called human epidermal growth factor receptor 2 (HER2). The treatments that specifically target HER2 cancers are very effective. So, at Stage I, you may or may not need chemotherapy. I chose to go with chemo because I wanted to do everything I could to kill the cancer. You might not need it - my fingers are crossed for you:) hugs, Jamie

      over 8 years ago
    • JudyS's Avatar

      Hi HGWWW,
      I was Stage 1a, HER2 Postive, without Paget's. My surgeon and onc recommended either a lumpectomy with Chemo - 6 sessions, every 3 weeks (Carboplatin/Taxotere), 33 radiation treatments and Herceptin every 3 weeks for 1 year or a mastectomy which would eliminate the need for the chemo sessions, however the % chance of reoccurence were identical either way. I chose the lumpectomy (less invasive) and this month I am 3 years out from my diagnosis, 11/10 I will be 3 years out from the surgery that got all of the tumor. I send best wishes and hugs to you!

      over 8 years ago
    • 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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