Paget's Disease of the nipple

Hello, is there anyone else out there who has recently been diagnosed with Paget’s Disease of the nipple? I got my diagnosis 10 days ago - it was a horrible shock obviously, but in another way I’d been prepared for it, 'cos my nipple had started to change about five or six weeks beforehand.

I was originally diagnosed with 4cm lump of high grade DCIS in my left breast 9yrs ago and had lumpectomy and radiotherapy. They’ve kept following me up every year since then cos I was only 40 when I was diagnosed. My nipple has been red since the DCIS, but has recently started being a bit itchy and with little pinpricks of blood on my bras. The skin’s also been drier and scaly, and the scaliness was extending into my aerola in different directions.

Then I had my routine annual clinic follow-up 17 days ago, and they took one look at the nipple and said it looked abnormal. They biopsied it, and gave me an appt for the results clinic the following week. I spent parts of the waiting time looking up nipple eczema online, but there weren’t any examples of eczema on only one nipple - all the signs were for Paget’s disease, especially when I googled images and the photos were identical to my nipple!

I’m waiting for surgery now - it’s not desperate that I have it really quickly, but I need a simple mastectomy, with already having breast cancer history. I’m provisionally booked for the 15th October, but it’s dependant on my blood pressure. I’m 49, very physically active, and have never had blood pressure problems! I think it’s to do with how stressed I’ve been lately, with my diagnosis and also another close family member is having chemo for Non-Hodkins Lymphoma so I’ve spent a lot of this year supporting them in practical ways as well as emotionally.

What’s that phrase about if life throws you lemons… make lemonade!? Wish I could have stayed as positive as that this week. Fraid I’ve been emotional, weepy, negative etc. Not helped by being told at pre-op assessment that there was a problem on my ecg and with my blood pressure being high, they suspected I had an enlarged heart on the left side. Anyway, ct scan shows it’s ok. I’ve just started on medication for my blood pressure, and hopefully will have my surgery on the 15th Oct. I’ve been trying to keep on at work, but phoned in sick yesterday, and can’t see myself going in on Monday, or perhaps even at all this next week. I’m feeling a lot better emotionally, but my job is very busy and I have responsibility for others, so might be better for my b/p not to be at work.

I can’t wait to get rid of this left breast - sorry if that upsets anyone who’s going through having to decide between lumpectomy and mastectomy. Last time, I chose to keep my breast, but this time I want rid of it, cos it’s let me down again. I’m not going for immediate reconstruction, but I know I can have it at a later date if I change my mind.

I feel I’m being sucked into the hospital system with all the tests etc we have to have, but all the staff are lovely, especially my breast care nurse.

This is only my second post, so if any of what I’ve written rings any bells with how you are, it’d be great to see your posts here! xx

Hi Shelley
Just found your post on pg 2. I don’t know anything about pagets disease so I will bump it up for others who might know more. Please don’t be too hard on yourself, it is a very emotional time. I am not surprised you have strong feelings towards your breast. I needed persuading not to have mx and even now I think maybe I should have. I hope you blood pressure gets sorted soon and the op can go ahead. Good luck debx

Hi Shelley,

I have put for you below the link to BCC’s publication regarding Pagets disease, I hope you find this helpful. If you would like to talk to someone about this then please do phone the helpline here, they’ll be only too happy to help.

Pagets Disease:*/changeTemplate/PublicationDisplay/publicationId/77/

Take care,
Jo, Facilitator

Hi Shelly. I don’t have Pagets Disease but I can still appreciate what you are going through. In respect of your breast - I wanted to keep mine and opted for a lumpectomy although my surgeon recommended mastectomy - at the time I think I was still in denial! anyhow I had to have a mastectomy as he didnt get clear margins and was breast was ‘unstable’ (his words).

I have high blood pressure too but the medication keeps it in control and have had no problems with surgery or anything - they are so good these days and you are finding they are very thorough - and whilst I can understand your anxiety about all the tests/findings its re assuring that they are looking at all these things.

In respect of work - I don’t think you should even consider going into work. Your head will be all over the place, and your emotions will be raw. I was diagnosed on a Friday and i never went into work until after I had recovered from surgery. There was no way I could work ‘normally’ having been given my Dx and I would have been a liability anyhow. Allow yourself time to weep and get emotional its not a crime you know. Allow yourself space to get your head round whats going on - stop googling too (that is fatal!) and will make things worse. This site is brilliant and you will get as much information and support as you need without having to go on to dodgy internet sites which seem to spell doom and gloom!

good luck with your treatment and keep us informed

Hi Shelly,
I had pagets disease of the nipple and high grade dcis. I have had a mastectomy and went for ld flap recon at the same time. Like you, I couldnt wait to get in the operating room and get this “thing” out of me! My other half was more nervous than me on the morning of the op. I woke up and the first thing i thought of was “my cancer has now gone”
The surgery was much easier than i expected. Anticipation is FAAARR worse than the op!
I had this done in March and was back to work in the July (on phased return!)
You will be absolutely fine, this is a blip in your life and after this you can carry on with your life…thats how ive looked at this year!
any questions then please pm me.
best of luck, will be thinking of you.


Hello there,

Thanks so much to all of you for your comments, which have really helped me. I’ve decided not to go into work until at least I’ve seen the GP again on Wednesday for the blood pressure check. I feel so relieved now I’ve made that decision, and actually I’ll probably not go back to work now until after the op, as my doctor offered me a sick note last week. Think I’ll take him up on it.

I’m meant to be going up to the Lake District on holiday for a short break soon - I’d be coming back a few days before my operation. My breast care nurse says it’d do me good still to go. I love it up there, and I’ve met up with my friend today who I’d be going with. It was really nice just sitting chatting with her today over a coffee in a nice cafe - with breast cancer on the “back burner”.

It’s just so nice to feel more like myself than I have done since the diagnosis. I’m really glad I joined this forum!

Love to you all!