paget's disease of the nipple

I have just had a partial mastectomy for paget's disease of the nipple....97% of cases of paget's disease have an underlying breast cancer...in my case I was misdiagnosed by a breast surgeon 8 months ago when i suspected that was what i had....he told me to put lucas paw paw ointment on my nipple and it would be fine.....I also had lumps in both breasts so he organized mammograms and ultrasounds but it was all just cysts. 8 months later my nipple was still peeling, flaky and going grey. So I went back to my GP and told her I strongly suspect I have paget's disease of the nipple. She said "Well it's not convincing but to be on the safe side I will refer  you to another breast surgeo" I got an appointment the next day and the breast surgeon said "It doesn't really look like it but just to be sure I will do some punch biopsies" She gave me a local anasthetic and did 3 punch biopsies...referred me for more mammogrames, ultrasounds, mri and more punch biopsies. a week later I had to undergo a partial mastectomy with nipple reconstruction. She was a brilliant breast surgeon and she got a plastic surgeon to reconstruct my nipple at the same time. I am still in a lot of pain as it was only 10 days ago and I had the stitches taken out this morning. But I am clear of any underlying cancer and now I have to radiation therapy 5 days a week for 5 weeks. My boob, once the scarring heals will look normal like I have had nothing wrong. I also have multiple sclerosis and I feel so blessed.that I have been looked after so well. Paget;s disease of the nipple is a rare form of cancer with 97% of caases having an underlying breast cancer.


This discussion is related to Paget's Disease of the nipple- should i demand biopsy?.

[japdip]

You are indeed fortunate in the outcome of your case.  This is an excellent reason that if you ever have doubts a second opinion is the best next step. Much better to be proven wrong than to neglect something serious. Best wishes for your continued successful treatment and congratulations on being persistant.    Regards ....

[FL_Bball_Mom]

I glad that you were taken care of and are now free from cancer.  It is a good thing that you kept pressing the issue!

I am a 41 year old female and what like to share with you what I have been experiencing to see if any of my symptoms are at all similiar to your symptoms.

My right nipple has been extremely itchy for about two years.  Sometimes, sometimes at embarrassing times, I have to slip into the side of my bra to scratch the nipple because the itching is unbearable.  Recently, I have noticed that my nipple has become painful, almost like a pinching sensation.  In addition, the area surrounding the nipple has become very itchy and almost rubbery feeling (but not discolored).  I also do not have discharge except for the normal milky type. Today, the nippled started to bleed so much that I had to put a bandaid on it.   There is a definite difference in appearance of the affected nipple compared to the left one.  The right one is dryer and darker in color all the way around and actually has a dark spot on it (almost like a freckle).  I have several times noticed that where the nipple meets the breast, skin flakes-off.  I lovingly refer to this as, "breast-rot."  I have used Cortisone ointment for months and it has not helped at all with the itching.  I have pretty small breasts and do not feel any lumps.  I talked to my Gyn last year about it and although he seemed concerned, the mammo and breast ultrasound did not reveal anything so I have not pursued any more (yet) with the Dr.

Ten years ago I was diagnosed with skin cancer (squamous cell carcinoma) on my neck and had an excision with no recurrence as of yet.  I'm not sure that this has any bearing but thought I would mention it.

I finally shared with my mother today what I have been going through and she informed me that my maternal grandmother had Paget's disease of the nipple about 40 years ago and had to have a masectomy (at the age of 50).   Do you know if this type of cancer is hereditary?  I am scrared to death.   I have two small children (ages 4 and 7) and my husband is such a worry wart.

I realize that you are not a doctor but can you offer any advice based on your experiences?   I am not asking for a diagnosis...just advice... so feel free to share anything you think might be helpful.  I am desperate for answers but do not want to seem like a hypochondriac either.  I have an HSA insurance plan (high deductible) so I am concious of the potential expense to obtain a diagnosis.

[simsima]

I have a similar case, 2.5 yrs ago I started developing such symptoms. My nipple became a bit pinkish, and scaly. No nipple discharge, no ozzing. Just crust as it is dry. I attached a photo for your ref. is it similar to what you had experienced?!!
I saw 7 doctors and they told me it is not paget's I did 2 biopsies and it came clean in addition to mammo and U/S. Yet I am still concerned. No changes in breast shape, size or skin or color. Appreciate your reply.

Could you see my post nipple disease and paget's where I had attached a photo.
Thanks again