Last Thursday I was diagnosed as having Pagets disease of the breast. I’ve had what I thought was eczema for about 18 months. I don’t have any lumps, the mammogram and ultra sound were clear but I am waiting for an MRI scan. I’m worried that the cancer has spread to other parts of my body because I’ve had it so long.
Hi Bessie
Welcome to the forums, I’m sure there will be some other forum users along soon to offer you support and advice. In the meantime you may find it helpful to look at the Breast cancer Care information leaflet on pagets disease.
This can be found at the following link:-
breastcancercare.org.uk//docs/pagets.sept05_updated_nov06_0.pdfd.
We also offer a telephone helpline where you are able share your worries and concerns as well as obtain further information. If you think it may help you to talk to someone please feel free to call. The number is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
I hope this is of some help to you.
Kind regards
Sam
BCC facilitator
Hi Bessie,
Hopefully the MRI scan will provide the answers you need. If not, then perhaps a further CT scan will be done to put your mind at rest and guide the doctors to treat you.
How is your Paget’s disease going to be dealt with?
Are you having surgery and or hormone treatments?
I’ve been having nipple eczema on the left side only for about 18 months, too. That same nipple seems to be inverted most of the time and for a few weeks I had an unusual discharge and bleeding but that went and since then I’ve been left with mostly itchiness and pain in the left breast.
I don’t have a diagnosis (the breast specialist has told me to watch for lumps and go straight into the clinic, no waiting of there is any change or worsening or symptoms) but coincidentally was started on hormone treatment with Zoladex a month ago for another condition, so I’m hoping that with this swtiching off my ovaries’ production of oestrogen for a while, the breast issues might clear up, too.
I’m sure some of the other ladies here will be able to share their stories of treatment and recovery.
I know it must feel isolating. You can always ring the Breast Cancer Care helpline (the number is given on this site) to be able to talk to someone about what you’re going through and receive the information you need.
Thanks for answering Puddleduck. The consultant said he hopes to be able to remove the affected area and a section of normal skin around it, but this depends on what is found on the MRI scan. He did not mention any other treatment. The cancer was discovered following a biopsy.
Hello Bessie
This is the first time I have accessed the site so my apologies if it seems a little late in the day for my response. I was diagnosed with Paget’s disease of the breast in August 2007 and the mammogram also showed a 3.5cm lump which had micro invasion. I have had a mastectomy and lymph nodes removed which were clear and am currently waiting to have reconstructive surgery.
I trust you have already had treatment and I hope it went well.
Hi Ladies
I have just been diagnosed with pagets also - a couple of days ago.
I am just so confused by it all.
I dont have a lump - just some microcalcifications behind the nipple - and a discharge.
It has taken weeks to diagnosis.
Im now being told that I need a full masectomy - and my consultant wont talk to me about a reconstruction.
I havent seen an oncologist.
What is happening with you, Ladies?
Hi ruby
It took weeks for my doctor to refer me and when he did it was to a dermatologist. The dermatologist handed the referral straight to the breast unit without contacting me so imagine my surprise when the nurse phoned and asked me to attend an appointment there.
I went and they gave me the diagnosis there and then after 4 biopsies, a mammogram and an ultrasound scan. I was told that the weeks before made no difference to the degree of cancer.
I wanted immediate reconstruction, however, I was informed it is very rare for someone with paget’s to have this as the cancer is under the nipple area and the need for radiotherapy or chemotherapy can be high. Also, they like to check that everything is completely clear afterwards.
I am having my reconstruction on 4th June and with hindsight (yes that wonderful thing) it was the right decision - having no breast was awful and I still dislike it but I have grown to accept it and waiting has made me face the ordeal I have been through. I feel that I will appreciate the reconstructed breast more than if I had just woken up with a reconstructed one which would not have looked as good as my own anyway.
I had problems with fluid building up for a few months and ended up having 4 months off work as work told me to stay off until after xmas and said they had sought advice from cancer experts who said I need 4 months off - I disagreed but they would not let me back.
Being at home made me think about what I had been through and I was quite down for about a month when I first went back to work - then I became angry and then there was light at the end of the tunnel - now I feel absolutely amazing.
I have friends who did what I wanted to do and went straight back to work and hid their heads in the sand trying to ignore what they had been through and just get on with it. They have said to me that I did it the right way and that I am over it - they are still stuggling with their emotions.
You never get over it but you can live with it and be happy.
I did not see an oncologist until after my surgery so do not worry. Hopefully you will not need any chemo or radiotherapy, a mastectomy is tough enough and it seems unfair when such a minor amount of calcification means a full mastectomy. This is because of the cancer being behind the nipple.
I wish you well xxxxxxxxxxx
Dear Friends
I have just had a lumpectomy but have been told that I have secondary cancer behind my nipple and will need to have my left breast removed and chemo. I have been reading about pagets and wonder if this is what I have. Around about Christmas time this year both my breasts flared up with this itchiness and I have always been troubled with eczeme around the hands and now certain areas of my legs and arms. My right nipple was very itchy yesterday and today, is this all in my mind as I’m beginning to get myself worked up. When I saw my consultant on Friday and got told the bad news he never mentioned reconstuction but being shocked I did not ask him if I had Pagets but I do remember reading about it before I went into hospital. If this reads as a garbelled message I am sorry but it is quite a worrying time for me. I get my msytecomy on the 14 May and have been quite positive about everything until today now I am worrying myself sick.
Hi Humbug
Thanks for your email - that was really helpful. Can I ask you some more questiions - (Sorry, so many questions - Pagets is rare, and not many people can offer their experience for it!!)
What happened after your mastectomy? Did they find anything else? Did you need further treatment?
When did you have the mastectomy? Any hormonal treatment?
I think that normally they assoicate pagets with something underlying in the ducts. I dont have any lumps - but who knows what is there - they cant see anything on mammo.
All I know is that I have some cysts and fibroidenomas - but they have been there years and dont seemed to have got any bigger.
When they were still trying to find out what was causing the discharge, my surgeon said that she suspected invasive ductal (IDC) but couldnt find anything to prove it. But then a nipple sample showed up pagets. My bcn, at the time when they were thinking it was IDC said that there was a 90% chance that I would need chemo due to my age (I am 42 next week).
But since, I was told pagets, I dont know anything.
Lisa
Millsie
Believe me, I have self-diagnosed many times. I even ended up at A&E with ‘a mass that developed overnight’. However, it was around my core biopsy - and was told it was probably scaring and was given penicillin. I spent many weeks on google, looking at what my symptoms could be. As they did more and more tests, and eventually the nipple sample, then I knew they were testing for pagets.
How did they find the secondary cancer? Is it a lump?
Your mind is very powerful - and can be very overactive! Your doctors obviously know what they are doing. If they are doing a mastectomy anyway, then they are taking away all of the tissue - so what would difference would it make anyway?
I also hear that eczeme flares up with stress!
Hope this helps!
Lisa
Hi Millsie
Yep I agree - the mind plays awful tricks on you, I was fine when I went home after my diagnosis and 2 days later every twinge was secondary breast cancer - it got ridiculous - managed to focus after a day or so though.
The fact you have excema on other parts of the body does not mean you will develop Paget’s disease as it is unrelated. Paget’s disease does not usually occur on both breasts.
This said - only your consultant can tell you whether it is Paget’s disease - I had a lump as well as the nipple discharge.
There is a great leaflet which I printed off to show my friends and family which is on this site and can be found by entering Paget’s disease in the search engine.
I wish you all the best for your forthcoming treatment. My thoughts are with you. xxxxxxxxxxxxxx
Hi Lisa
After I had entered my comments I looked and thought Oh no!! I have written an essay - I got a little carried away so what a relief it was to see you found it helpful.
Nothing else was found after my mastectomy and it had not spread to the lymph nodes. I did not need any hormone treatment or any chemotherapy or radiotherapy. I was pre warned that if I did need extra treatment it would most likely be chemotherapy as I was 41 at the time - well actually strictly speaking I was 40 as my mastectomy was last August - the day before my 41st birthday. Not the best birthday present.
I am a little saddened but also grateful to find someone else the same age as me having had this as it is so rare and mostly women over 70 apparently.
My lump was plain to see by all on the mammogram and ultrasound - it was 3.5 cm and still had not spread so fingers crossed you have the same result.
When is your op or have you had it? The op itself was fine by the way, no where near as bad as I though it would be - in fact a 100 times easier.
Paget’s disease is one of the slower growing breast cancers and my breast nurses told me that if you have to have one and if theres choice that’s the one to go for. The other option was, of course, not to have it at all - I advised I had chosen that one but I drew the short straw.
Hope this has helped- any more questions just fire away.
I am at peace with it now but I know one thing - I never want to go through that again - the immense pressure and the different emotions are incredible and like the world’s worst rollercoaster. Keep strong and don’t forget to allow yourself a good old cry now and again - it all helps - and that coming from me - the worlds worst at showing emotion
love to you all
xxxxxxxxxxxxx
Karen
I’m just home after having my nipple and surrounding area all taken off my laps dors recon (done in 2003) and it’s such a schock to me, it now feels really like I have BC given I had a perfect recon that even the new Onc here didn’t realise till I pointed out the scars. Now it’s a small mount sitting on my chest looking very sad and I am SOOO upset about it.
Thankfully, I suppose, it is non invasive, so now just waiting for confirmation when they do all the tests on the lump they have removed.
Kx
Hi Humbug
Your notes have given me some hope of cure. However, somethings changed today.
Funny - my bcn nurse said those exact same words to me ealrier this week about it being her preferred bc!
My op was supposed to be tomorrow.
However, my op has now been cancelled since they have found something on my lung (pre-op chest xray), and need to do a CT scan to check what it is.
Of course, I asked all probing questions about secondaries, since I havent had TB, or bronchitus or anything like that.
I’ve gone from having a localised bc to something secondary (possibly). Cant think straight.
I have been to my hypnotherapist again today, and I was focused on tomorrow… not its gone.
Lisa
Humbug
Where are you from?
lisa
Hi Liza
I went to my breast nurse today to get some of the fluid drained off and asked her some more questions, as I was quite shell shocked on Friday and did not clarify some things I wanted to know with Consultant. I do not have Pagent’s cancer but as I said I will get my breast removed on Wednesday and then will go through six months of cheomotherarpy which I am dreading. You are right I have had a lot of stress over the last few years but it also flares up when I am due to come on. Thanks for you good thoughts.
Millsie xxxxx
Thanks Humbug, I have been bothered with a lot of excema over the last couple of years which I have put down to my time of life or stress and I am just not happy to have to go back to back to hospital again and get the breast removed because they found some more cancerous cells near the nipple (hence I thought Paget’s). I will still read your leaflet.
Thanks very much you lovely ladies xxxx
Lezignac2 - K
I really feel for you - I am desperate to have my ld flap recon which is very soon and can’t even imagine how you must be feeling - like a step backwards. You know deep down it has to be done and I expect everyone keeps saying “at least you’re still here” as they do to me but that does not make it any better does it?
Millsie
Wow you brave lady - you can do it and we’ll be here for you! Not that we are able to go through it for you - if only we could. xxxx
Lisa - Lets hope it is not what you are bound to be thinking
Oh No Lisa - Lets hope it’s not what you are bound to be thinking. Did the nurse or consultant give any answers when you asked about secondaries? You said you didn’t have a lump so I am hoping that is a positive sign. Good luck - do you know when your scan is? You have all reduced me to tears today. I am thinking of you all. xxxxxxxxxxx
I am in Lincolnshire xxx
Hi Humbug
Sorry - I missed this post. I have so many questions on many posts at the moment.
I did get a CT scan quickly - the next day, and results by Friday morning. The lung marks was confirmed to be something that had been there probably most of my life.
I cant tell you the relief! It put everything into perspective for me - loosing a breast? If it saves my life, then let it be. I can get a recon later.
I just want to be cured.
So my op is now on Monday 12th… my breast care team have been amazing.
Dreading it though.
Lisa X
Humbug
Did you need chemo or radiation treatment, or use hormone treatment?
Lisa
Humbug
Just re-read your notes. Im having my mastectomy the day before my 42nd birthday.
Grat birthday pressie.
Just off to have a last look at the pair together, then bed ready for the massacre tomorrow.
Thanks for your notes
Lisa
Hi Lisa
No chemo/radiotherapy or hormone treatment req although all the problems I used to have in that breast were put down to hormones so was surprised when it was not hormone receptive.
Hope you enjoy your birthday - I still did - there was cake and pressies and 6 helium balloons around my bed and I was totally spoilt by everyone! Got extra pressies cos of the op so milk it if you can - no pun intended!
What a relief there is nothing further to worry about.
Oh no - I’ve just noticed - you will have had your op by now. Hope it all went well.
xxxxxxxxxxxx
Where are you?