Newly Diagnosed Pagets Disease

Hi Desley ,  my name is Heather i am 28 and have been experiencing some symtoms similair for over 3 years now.  Still not aware what is wrong.  I had breast implants in 2008.  I Seen a doctor about pain in my right armpit back in Scotland about it and my sore nipples. Nothing as such was said pr came from that just cream and told to go easy at the gym.

  Last year in 2011 i was up north queensand and seen a doctor about pain , itchy red nipples, changes in shape on the right nipple and colour.

Over half of the right nipple has changed colour from brown to a hot sore looking pink colour.  I had a mamogram and nothing.  Doctor had a good grope of my breasts and sent me home. 

One year on i cant even sleep without having to hold my right armpit.  My nipples are sore on both sides now , never heal are contantly crusting and breaking open at the bottom .  The nipples are also weeping badly.  This will be the 4th time i have been to a doctor.  Just not sure where to go from here.  I am flying back home in 3 weeks to see my uk doctors again, try and chase down my surgeon from the implants and demand a biopsy.

In the past two weeks one of the nipples has became inverted and pulls in like a nerve.  I have been reading symptoms but they say its older women and only one breast that appears different.  I am so conused. 

Hi Desley ,  my name is Heather i am 28 and have been experiencing some symtoms similair for over 3 years now.  Still not aware what is wrong.  I had breast implants in 2008.  I Seen a doctor about pain in my right armpit back in Scotland about it and my sore nipples. Nothing as such was said pr came from that just cream and told to go easy at the gym.

  Last year in 2011 i was up north queensand and seen a doctor about pain , itchy red nipples, changes in shape on the right nipple and colour.

Over half of the right nipple has changed colour from brown to a hot sore looking pink colour.  I had a mamogram and nothing.  Doctor had a good grope of my breasts and sent me home. 

One year on i cant even sleep without having to hold my right armpit.  My nipples are sore on both sides now , never heal are contantly crusting and breaking open at the bottom .  The nipples are also weeping badly.  This will be the 4th time i have been to a doctor.  Just not sure where to go from here.  I am flying back home in 3 weeks to see my uk doctors again, try and chase down my surgeon from the implants and demand a biopsy.

In the past two weeks one of the nipples has became inverted and pulls in like a nerve.  I have been reading symptoms but they say its older women and only one breast that appears different.  I am so conused. 

Hi Ange,

Sorry to hear about your symptoms.  In regards to my pagets my nipple was itchy sometimes but mainly the skin became what I would describe as "fragile".  It was on one side of my nipple on the aerola and I thought at first my bra had rubbed the skin off.   So it would heal over but then I would wipe it with my towel after my shower and it would come off or it would rub off in my bra.  My local GP said it was nothing and sent me for an ultrasound which turned up nothing.  Then he referred me to my surgeon for a second opinion.  He is an older surgeon and he looked at it and said it didn't look like anything and gave me cream and to come back in 2 weeks as I was only 36 and pagets is very rare and usually an old person's disease???!!!  Well this went on for a couple of months with lots of different creams and then finally he said that we have come to the end and that we would have to get a biopsy to see what it was so that we could treat it with the right cream!  So had the biopsy and he said that he really didn't think it would be anything so I went for my results on my own! what a mistake.  Being told that you have breast cancer when you are by yourself is not nice!!!!  In regards to your symptoms you have some of what I had but with this type of cancer  it doesn't present exactly the same with each person.  I highly recommend that you seek a second opinion to get a definate diagnosis.  I hope you get the help you need as I believe knowledge is power and once you know what you are dealing with you can treat it.  Good luck at your appointment and if I can help in any way let me know.  Regards Desley.

Hi there,

My right nipple and aerola are very itchy, tender, and reddish.

It started with my aerola (the pink area around the nipples) loosing their colour, accompanied by itchiness (which was not bad back then). This proces started around 2-3 years ago and gradually i lost colour on my aerolas first on one breast then on the other; now both my aerolas lost their pink colour fully; they are white now.

drs said dermatosis, eczema, vitiligo. the oinments they gave didnt help. then the itchiness worsened and is now only on my right aerola and nipple. it is almost unbearbly itcy. this friday i will see a dermatologist at the rpa hospital in sydney. the nipple on my right breast is red and painful, too.

there are no changes other than the itchiness, tenderness and redness on one nipple (previously it was on both), lost colour on both my aerolas. no scar  like or other type of changes on the skin or aerola. and as said that itchiness started 3 years ago; since then i can only wear bras which are cotton inside. it seemed like an allergic reaction. it worsens during my periods. i am premenouposal and am 50.  does anyone lost aerola colour? are ur symptoms (itchiness) worse during  menstruation?

Thanks in advance 4 ur replies.

Hi there,

My right nipple and aerola are very itchy, tender, and reddish.

It started with my aerola (the pink area around the nipples) loosing their colour, accompanied by itchiness (which was not bad back then). This proces started around 2-3 years ago and gradually i lost colour on my aerolas first on one breast then on the other; now both my aerolas lost their pink colour fully; they are white now.

drs said dermatosis, eczema, vitiligo. the oinments they gave didnt help. then the itchiness worsened and is now only on my right aerola and nipple. it is almost unbearbly itcy. this friday i will see a dermatologist at the rpa hospital in sydney. the nipple on my right breast is red and painful, too.

there are no changes other than the itchiness, tenderness and redness on one nipple (previously it was on both), lost colour on both my aerolas. no scar  like or other type of changes on the skin or aerola. and as said that itchiness started 3 years ago; since then i can only wear bras which are cotton inside. it seemed like an allergic reaction. it worsens during my periods. i am premenouposal and am 50.  does anyone lost aerola colour? are ur symptoms (itchiness) worse during  menstruation?

Thanks in advance 4 ur replies.

Hi there,

My right nipple and aerola are very itchy, tender, and reddish.

It started with my aerola (the pink area around the nipples) loosing their colour, accompanied by itchiness (which was not bad back then). This proces started around 2-3 years ago and gradually i lost colour on my aerolas first on one breast then on the other; now both my aerolas lost their pink colour fully; they are white now.

drs said dermatosis, eczema, vitiligo. the oinments they gave didnt help. then the itchiness worsened and is now only on my right aerola and nipple. it is almost unbearbly itcy. this friday i will see a dermatologist at the rpa hospital in sydney. the nipple on my right breast is red and painful, too.

there are no changes other than the itchiness, tenderness and redness on one nipple (previously it was on both), lost colour on both my aerolas. no scar  like or other type of changes on the skin or aerola. and as said that itchiness started 3 years ago; since then i can only wear bras which are cotton inside. it seemed like an allergic reaction. it worsens during my periods. i am premenouposal and am 50.  does anyone lost aerola colour? are ur symptoms (itchiness) worse during  menstruation?

Thanks in advance 4 ur replies.

I had paget's disease of the nipple two years ago now I  think I have it in the other nipple.

Dear Amanda,

Thank you so much for your info I will go on there and see if they can help.  Since posting I have found another breast care nurse who has been extremely helpful and I am arranging some counselling so hopefully this will help. 

Regards

Desley

Hi again

I just went on there and did a quick search on Pagets and it came up with over 350 matches so it might be worth a go.

Good Lcuk,

Amanda x

Hi Desley

I am so sorry you haven't found anyone in your situation to talk to and feel so alone.  There are wonderful ladies on here but it seems so far no one with the experiences that you are looking for.  

Have you tried the American breast cancer.org site? (www.breastcancer.org) 

The population over there (and there are many women from over the world on the site) may mean you can find someone with similar experiences.  

I can't offer much help on the radiation as I am yet to start that - sorry.  I wish you the best for your journey and hope you find some other people to chat to as well.

Amanda x