Hi I have never posted before but since being diagnosed with the above on December 23rd 2009 I have been reading the posts on here and I am amazed at how brave and how young most of you are. I honestly did not realise that BC affected so many young women. Now I know how ignorant I have been about this awful disease. I am reading mostly about lumps being found in the breast but mine started with a couple of pimples around the nipple area, not sore or cracked or weeping, so went the docs and he gave me some anti-biotic cream he thought it was eczema. After a month went hospital, had a mamogramme it showed nothing and I was told it would settle down. - (all this was 18 months ago) - Had a routine Mamogramme in Sept.'09 once again results came back normal. Went back to my doctor in November and asked to be referred once again to hospital as by this time my nipple was starting to thicken. This time a biopsy was done and some cells were found, I had a masectomy on 30 December '09 and I can’t help thinking all this could have been avoided if the early signs of Pagetts disease had been detected on my first visit to hospital. Not enough is publicised about this particular disease wich apparently only affects the nipple area but is invasive I wondered if anyone else had heard of it or had been treated for it.
Dear martinibianca
I just wanted to say how much I agree with you with regards to your concerns of the hospital not recognising the symptoms of Pagetts Disease. I myself had invasive lobular breast cancer. My GPs refused me access to further investigation (3 times over a 4 year period) saying my symptoms of armpit swelling, armpit thickening and armpit lumps were the remains of a viral infection. I put myself into the system when I reached age 50 and was diagnosed with invasive lobular breast cancer at an advanced stage. It strikes me that if you are slightly outwith the norm you can find yourself in a bad place. I fear that many Health Care Professionals do not appear to be sufficiently trained in recognising anything other than a breast lump.
You may consider campaigning re Pagetts Disease if you feel that would be helpful to you and for others in the future.
Wishing you well.
Love
Jeannie
i also had pagetts with DCIS…
i went to my GP in January 2009 with my right breast. nothing was there, but i did have itching of my nipple. At the time i did not realise this was a sign, but i had no cracking.
Then in march my left nipple started to crack and weep. I tried alsorts to solve it because my GP said my breast were fine. I’m only 39 and he was looking for lumps. So i returned to my Gp in August 2009… and He checked me over my left breast was swollen on the outside… And he decided To do a full blood count, But i do believe that would not of been done if i was not type 2 diabetic. He gave me anti-biotics and asked me to return once i had finished them for results of blood count. It showed high progestorone… So i was refered and they found DCIS… i had mastectomy/recon in October 2009… and watching on nipple
Hi I have just been diagnosed with pagetts. I had surgery chemo & radiotherapy 18 months ago for DCIS stage 3. 6 months after completion of radiotherapy my nipple started to weep. A cyto scrape revealed nothing. A few months later a punch biopsy was carried out. this showed nothing - neither did a mammogram in August 2009. referral to a dermatologist and a further deep nipple biospy showed up as pagetts.
Has anyone else had Pagetts after dcis, is there a recurrence of dcis and is a mastectomy recommended. Any further information would be appreciated. Help I thought all this was behind me.
LyndseyP5