Paget's Disease

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1

Anyone had surgery having been told they have this? I’m so worried about what is going to happen now…I can’t find anything about it (for people who have already had a mastectomy and recon). So I’m in the dark here.

Thanks
Karen

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Hi Karen

You may find it helps to read the Breast Cancer Care fact sheet on pagets disease, it can be found by following the link below:-

breastcancercare.org.uk//docs/pagets.sept05_updated_nov06_0.pdf

Additionally if you would like to talk through your diagnosis with someone from our helpline please don’t hesitate to give them a call. The number is 0808 800 6000 and the lines are open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

I hope this is of some help to you.

Kind regards
BCC Facilitator

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thanks, I got the leaflet, but it doesn’t help someone who’s had Mastect and LD recon? Will they still take it all off? I live in France too , so can’t ring the line.
I am hoping, perhaps someone out there has experienced this too?

Cheers for replying though and I find comments on here very helpful

Karen

4

Hi
I was diagnosed with pagets disease as well but it was discovered on histology after I had a mastectomy for high grade DCIS. So they said that as I’d already had a mastectomy I didn’t need any other treatment.
Would that not be the same for you? When did you find out you had pagets and when did you have your mastectomy?

Sandra

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Hi, I had mastec in 2003 with Lap Dor and since 2005 have had three lumpectomies, same side. Two weeks ago I had a biopsy and they told me I had paget’s - never heard of it before. So have MRI on 9th april and the surgeon has said I will have to have surgery…! so am worried and confused. My nipple is my own, which was saved after the mastec. So I am guessing that it will have to go?

Thanks for your reply.
Karen

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yes I think you will lose the nipple. Pagets is a disease which affects the area of the nipple in particular. Bad luck

Mole

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thanks, I guess it’s bad luck full time with this soddin disease! get used to it after a while.
K

8

Hi
I’m assuming you had a skin sparing plus nipple saving mastectomy. I was told I had to lose my nipple because the dcis was widespread and close to the nipple. So thats probably why I didn’t need any other treatment following mastectomy. From what I have read on Pagets tends to sit below the nipple and its often associated with dcis. What came first? Chicken and the egg situation. So yes I’m sure you will lose your nipple. Your right this is a soddin disease!
Best Wishes

Sandra

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I had Lap Dors recon and it was invasive (lymphs out) and my onc told me that he just managed to save the nipple as one tumour was right below it, so I guess having it for nealry 5 years after being told I might not isn’t too bad…!!
The last year it’s changed colour, bled and looks like I’ve got eczema most of the time, hadn’t been picked up - I think Radiotherapy made it worse.
It’s now just like dead skin…eeek!
Oh well, MRI will tell all I guess, so hope it’s contained there and no where else.
Keep you posted. Off to buy jelly tots - (do they still have them thesedays?)
Thanks again
Karen

10

Apparently a nipple that looks like eczema is a common symptom of pagets. I never had that but I did use to have a sharp burning sensation through my nipple, only occasionally, a bit like someone had stuck a hot knitting needle through it. That is also a symptom. I never knew. It’s not anything I would ever have gone to the doctors for. I don’t think there is enough information about what to look out for. I only really used to check for a lump. You should have treated yourself to a jelly tot easter egg I’ve seen them…

Love

Sandra