Pagets disease with high grade dcis

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Hi new on here so bit of a long story. Iy started in October noticed a scab on my nipple that wouldn't heal, went to gp in December as couldn't cope with it, was referring to breast clinic and seen in January, mammogram was clear and scan doctor advised e45 cream and left it..fast forward to June and 4 lots of antibiotics steroid cream, no skin let on nipple and it sunk, sent back to breast clinic 6thjuly docto done punch biopsy and said she's not concerned at all...18th July called into breast clinic..doctor apology I'm so sorry its pagets with dcis...need another mammogram and scan ready for lumpectomy which by the way has been arranged for 14th August, oh OK.. called back in on 1st August.. I'm so sorry its spread and is high grade so will need to do mastectomy in stead...my head is swimming and I can't help wonder if she had helped me in January if my outcome would be different.

  • oh gosh i am so sorry to hear this, hugs from afar, and it must be so angering and frustrating Cry. i do hope the surgery helps tho it is not what one wants. i had a lumpectomy and sometimes think taking the whole this gone would have been better, but i am finally not swollen. i also know women who had mastectomy and regretted it to begin with, and my aunt was just happy to have the whole thing gone when she was diagnosed, she then did reconstruction later.

  • Thank you. Everyone keeps telling me it's best to have mastectomy with reconstruction, but it's so frustrating to think it wouldn't have come to this. I just hope by sharing my experience it will encourage others to push like I had to(even though we shouldn't have to) the doctor keeps telling me that mine didn't present like normal, so maybe they need to look at pagets more.xx

  • we know something is wrong, my gp was like i don’t feel it. Expressionless

    yes one of biggest annoyances in all this is having to advocate for oneself so much when we want to curl up in a ball.

    lots of support here and hopefully helps you along your road.i read someones journey in breatcancernow who had similar sou ding story and it helped. as do so many on here.

  • Hi Honey

    I hope you see this message as it’s been nearly two years since you posted. I was wondering how things turned out for you, eventually?

    I’ve had a few issues since even before my diagnosis in May (when I was told I’d have surgery at the end of June), with lost swabs, referrals not made - and feel very like you in that I seem to be constantly chasing medical professionals. I finally have an appointment with my breast consultant tomorrow. I’m hoping they’ll have the results of the latest two biopsies I had the week before last. The MRI had shown up more areas of concern (to add to the already diagnosed Paget’s and two areas of high grade DCIS in the two lower quadrants. These latest biopsies were in the upper, so I’m going along kind of expecting to be told that rather than a lumpectomy it’ll become a full mastectomy…

    Hope to hear back from you Fingers crossed tone1

    Best wishes