Pagets Disease
I was diagnosed with Pagets Disease of the nipple early Oct and had a Mastectomy on 25th Nov. I was wondering if any others have had the same diagnosis as I understand it is not common.
Forum Discussion
- Hi Sue, I was just reading up on Pagets disease of the nipple, and as you said, it is very rare. This is a good site, as there is likely to be someone here that has the same as you and will make contact with you. Do you have to have any more treatment other than your mastectomy? Wishing you a very happy and healthy 2012. Love Chris xx
- Hi Sue, I was just reading up on Pagets disease of the nipple, and as you said, it is very rare. This is a good site, as there is likely to be someone here that has the same as you and will make contact with you. Do you have to have any more treatment other than your mastectomy? Wishing you a very happy and healthy 2012. Love Chris xx
- Thanks Tanya for your reply, I did a search and found two that have had Pagets . I have made contact and had a reply which is so like my diagnosis. Thanks for your help this is a great site. Love Sue
Great that you have had a reply already. I see another post from earlier today from ymeynotme that is Pagets too just incase you missed it!!
Tanya xx
Hi Sue F. Thanks for sharing. I am probably now the 3rd other woman with this diagnoses on this site. I just learnt the term this week gone by. A rash on my nipple and surrounding area that never cleared after first visiting a dr. three & a half years ago. Three doctors later and three topical creams later it would appear that finally I have some answers. Biopsy complete & results on Wednesday. Mammogram today in about 8 hrs. Fear the worst as images on internet mirror my own breast nipple & aerola area. Could only google it all completely once Dr gave me the term :(. Thanks for reading.
Hi Sue F. Thanks for sharing. I am probably now the 3rd other woman with this diagnoses on this site. I just learnt the term this week gone by. A rash on my nipple and surrounding area that never cleared after first visiting a dr. three & a half years ago. Three doctors later and three topical creams later it would appear that finally I have some answers. Biopsy complete & results on Wednesday. Mammogram today in about 8 hrs. Fear the worst as images on internet mirror my own breast nipple & aerola area. Could only google it all completely once Dr gave me the term :(. Thanks for reading.
- Hi Kahu. I had a very itchy nipple for about a year before a rash appeared on the nipple and surrounding area. I left it hoping it would go away, but eventually mentioned it to my Dr who treated it with an antifungal cream for 6 weeks. There was no improvement so he sent me for a Mammogram and Ultrasound, both of which showed nothing abnormal. Fortunately he was not happy with this and sent me to a Dermatologist who straight away said it could be Paget's disease. A biopsy was done and a week later I returned to be told yes it was cancer. Of course this was a big shock even though I had googled and thought it was possible. I was booked in with a Surgeon the next week who then did a Mastectomy the following week. It all happened so quickly and my family and friends were really good, this all happened late Nov 2011 and I was lucky not to have to have chemo or radiation. I am now used to my new normal, though my body minus a boob took a while to adjust to, and now i am back to my usual activities and enjoying life. It is amazing how we cope so keep as positive as you can despite what is happening to you at this time, and all the best to you. Sue
Hi Sue hope you are doing well and coping OK. I too, have had a week of tests after having what I thought was an infection in my left breast. Will have another scan and ultra sound in three weeks to rule out paget's. Crossiing my fingers and toes.!!!!! At 57 and menopausal, not sure why I would get an infection like mastitis? I have had antibotics and will continue for 18 days all up, half way through and seems to be clearing up, I still have a tingling feeling under the nipple and a pulling out and down sensation, has anyone else had a similar experience? I am trying to stay positive, but it is a big worry. take care Deb xx
- Hi, My name is Kylie and I'm 38yrs old. I've just been diagnosed with Paget's disease of the nipple and high grade DCIS. Also suspicious lymph node showing activity. I have no breast cancer in my family history. I only found out I have the above conditions as I was having difficulty feeding our newborn baby girl as my nipple and milk supply wasn't normal. We have two other daughters aged 2 & 5 which I breastfeed successfully so my gut feeling was something was definitely wrong. I was shocked to find out via a punch biopsy by a dermatologist that I had Paget's as were my GP, lactation consultants, OBYN etc. after exhausting antibiotics, cortisone creams, natural therapies, reduced feeding on my R side over a 3 month period. This has absolutely rocked our world with our young family. So far we have done ultrasounds, MRI's, biopsy of the lymph glands, full body & bone scans plus the removal of my R nipple and half the breast. The original ultrasound and MRI only picked up imaging of the Paget's and missed the DCIS 8mm. I'm struggling to find out information about Paget's especially for my age group and what other women have done as their next step. One surgeon we have consulted highly recommends the 'wait and see' regarding possible return of DCIS on either breast (or Paget's on L) with yearly imaging check ups and 3 monthly ultrasounds on lymph whereas another surgeon strongly recommends preventative measures to avoid possible return with a dbl mastectomy and reconstruction. Any advice would be greatly appreciated. Thanks, Kylie
- Hi, My name is Kylie and I'm 38yrs old. I've just been diagnosed with Paget's disease of the nipple and high grade DCIS. Also suspicious lymph node showing activity. I have no breast cancer in my family history. I only found out I have the above conditions as I was having difficulty feeding our newborn baby girl as my nipple and milk supply wasn't normal. We have two other daughters aged 2 & 5 which I breastfeed successfully so my gut feeling was something was definitely wrong. I was shocked to find out via a punch biopsy by a dermatologist that I had Paget's as were my GP, lactation consultants, OBYN etc. after exhausting antibiotics, cortisone creams, natural therapies, reduced feeding on my R side over a 3 month period. This has absolutely rocked our world with our young family. So far we have done ultrasounds, MRI's, biopsy of the lymph glands, full body & bone scans plus the removal of my R nipple and half the breast. The original ultrasound and MRI only picked up imaging of the Paget's and missed the DCIS 8mm. I'm struggling to find out information about Paget's especially for my age group and what other women have done as their next step. One surgeon we have consulted highly recommends the 'wait and see' regarding possible return of DCIS on either breast (or Paget's on L) with yearly imaging check ups and 3 monthly ultrasounds on lymph whereas another surgeon strongly recommends preventative measures to avoid possible return with a dbl mastectomy and reconstruction. Any advice would be greatly appreciated. Thanks, Kylie
