Paget's disease

Hi everyone, I’m 32, no family history of breast cancer. I suffered from a tingling itchy nipple for 12 months. I thought it was eczema and I ignored it. My Partner encouraged me to go to the Doctors and I was referred straight to the Breast clinic. They were great and took a punch biopsy but re-assured me it was unlikely to be anything other than contact dermatitis or eczema. I went back for my results alone expecting to get some cream and be on my way. When they asked me to take a seat in a room with a box of tissues i knew the news I was getting before 3 of them came in the room. I was diagnosed with Paget’s disease wed 20th Jan. I struggle to get that moment out my head. Mammograms/ultrasounds and further biopsies later - early indication is I have DCIS and also IBC lump close to my chest wall too. I have no option but but to have a mastectomy. So much information thrown at me at once and my Partner then arrived. I’m remaining positive but Wednesday will be the day they tell me date of operation and confirmation of the cancer in my breast and treatment options. So much to take in. I am going over my options but feel right now I don’t want reconstruction at all - I just want the cancer out of me and to get well. I guess I won’t know about radiotherapy/chemo until I have the pathology of my breast and lymph nodes. Anyone else offer advice or likely treatment?
Also, I’m thankful for the Paget’s as without this I wouldn’t know about the cancer within my breast- however why is it we get smear tests from the age of 25 for cervical screening yet no mammogram screening until in 50’s? What’s with that? Surely this disease is now so prevalent among younger women they should recognise to catch it early gives everyone the best chance?

Hello, Em6619,

I read the title of your post, which caught my eye as my late grandmother had Paget’s during the 1950’s when they had few treatment options other than surgery, and cancer treatment was not as advanced as it is now.

I agree totally with you about breast screening starting at 25- indeed, when my daughter attended my intitial diagnosis appointment with me, the Consultant actually advised that she started having mammograms from the age of 25 [I was 51 at diagnosis five years ago] so perhaps it is something currently being considered by the medics.

I cannot give you any specific info regarding treatment for Paget’s- I had a lumpectomy, full lymph node clearance, 3xFEC, 3xTAX, followed by rads, for Invasive DCIS, but I thought I would send you good wishes for your consultation on Wednesday.

 I think you will feel a lot more settled once your Treatment Plan is in place.  It may not seem like it at present, but you do get through it.  BC is one of the most researched cancers, and nowadays we all benefit from the fantastic medical advances, compared to decades ago when surgery was the only available treatment.

I see you are only in your thirties, and I believe there is a Board on this forum especially for young women diagnosed with BC, where you could also get support.

Take care.