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Paget's disease strongly suspected

(5 Posts)
bobdylannumber1 Fri 16-Sep-16 17:30:06

Hi can anyone advise me please on this I know it's a rare cancer, I had a breast rash since December went to gp said looked like a fungus referred me to breast clinic wasn't worried she said to be seen in 4/5 months, I had a biopsy 2 weeks ago and breast dr said looked like ezcema. I went back on Wednesday alone to be told it was suspicious of Paget's disease I was in shock I had read about this and that's why I went to dr in first place and because my husband and sister said to go.i am 46 next month.dr kept saying not 100% but didn't seem hopeful of prognosis changing, I was numb he did another bigger biopsy and next morning I had a mammogram and ultra sound these were clear no lumps no dcis I think it's called I'm having results of biopsy next Wednesday I'm delighted I've no further issues but if it's Paget's dr said its nipple removal,has anybody else had this rare cancer,or has anyone had a cancer suspected then it's been clear? Chances of this are slim aren't they any advise greatly appreciated.

whirlywhale Fri 16-Sep-16 22:14:14

hi,
I had Paget's disease, mine was discovered after I was diagnosed with Breast Cancer. I was told that it often goes hand in hand with a tumour elsewhere in the breast. I had 2 tumours one quite close to the nipple and one on the outer left quadrant of my breast. Had (in hindsite) an itchy nipple for a few months before diagnoses which I sort of ignored as have sensitive and itchy skin anyway. I had a mastectomy anyway due to having multi centric tumours. It is quite rare but is good that you've not hopefully any other problems in the breast. Good luck, if you need any more advice generally, the ladies on the lacies tamoxifen thread are lovely x

bobdylannumber1 Fri 16-Sep-16 22:55:28

Thanks for the reply whirlywhale, it's so scary isn't it,there isn't much information on it I will go over to LaCies thank you hope your fully recovered now.

NanTheWiser Sat 17-Sep-16 11:47:08

My friend was diagnosed with Paget's a couple of years ago (she was 72 at the time). She had an itchy rash, but thought it might be eczema and kept trying different creams with little effect, so eventually went to her GP. He was on the ball, and referred her to a Dermatologist who did a biopsy, with the news that it was Paget's. Fortunately, like you, she had no other lumps, so underwent surgery to remove the nipple and surrounding tissue, then had about 6 months of radiotherapy, no chemo needed. She's now on Tamoxifen, and has recently had her yearly mammogram and check up, and everything is all clear. She does have some soreness from the radio treatment, but apart from that is fine.
HTH, and good luck.

whirlywhale Sat 17-Sep-16 17:23:45

No worries Bobdy,

It is a scary thing especially as there's no lumps or unusual changes with Pagets. Hopefully a plan of action will be put in place for you soon, I found I felt calmer when I knew what was coming.

Is a scary journey but there's plenty of hand holding on the lacies thread and the Macmillan community are lovely too especially if you feel low or need advice,

Big hugs,

Nix xx

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