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
16 Replies
- Hi Kahu, Thank you as well for responding so quickly. The last month has been a huge roller coaster ride and I must admit I've felt very alone trying to comes to terms with my diagnosis. I have the most wonderful husband, adorable girls and beautiful family & friends. Like any disease friends and family can support and love you however unless you have been diagnosed it's impossible for them to really understand. I'm trying so hard to remain strong, positive and determined to look at the bright side however secretly I'm crumbling inside. Outwardly everyone is commenting how brave, strong and well I'm coping. Thank you so much like Sue for now being my personal champions and letting me know a mastectomy is a reasonable option. Best wishes, Kylie
- Thanks again Sue for sharing your personal story. My mind is just consumed 24/7 with diagnosis and what decisions need to be made. If there are any other woman who have this or had this diagnosis I'd love to hear your stories. Kind regards, Kylie
Hi Kylie, Firstly I just wanted to say Kylie that I am very very sorry to hear about your diagnosis and that it is okay to be scared as I know I was when I first learnt about my Paget's disease. I was pretty angry at first that 3 doctors missed it and I don't want much television so I had never heard of it. Then when I heard of it and googled the subject it would appear that a flaky itchy nipple was something that was quite necessary to have investigated. I think I found on the internet a couple of shows that had been aired on tv - so note to oneself was immediately to watch more tv & work less :). Anyhow I found great comfort in the support of women from this site and it meant a great deal to me. There were those nights when I lay there unable to sleep and I was very frightened. However I placed a great deal of faith in my surgeon, she was simply wonderful and my husband and I took the journey together. It was recommended that I have a mastectomy as I had Pagets and DCIS which was through the breast so the hope was that I would then have the lymph nodes tested to see if further treatment was required. I worked very hard to stay positive and whilst there were times that this left my side most of the time I said well I could have been 18 or 25 or 30 & this helped me personally. It isn't for all and it's a journey that everyone handles differently. I had the mastectomy, the nodes were tested & yes it was a scary time waiting for the results. I was personally terrified of the radiation. I thought I can do the chemo, I can do the hair loss, I will be sick but the terror of the radiation almost immobilised me. So I used the waiting time to focus on what I loved, my family, birdlife, nature & I read other women's stories and experiences and tried to make myself strong that way. The end result was that I didn't need the chemo or the radiation therapy. Yes I was minus a breast and I did not choose reconstructive surgery as I felt for me personally I didn't want to put myself through anymore than I had already gone through. Pagets is quite rare and at the time I wanted to know more and more as I think I wanted to take some control back but not too long before my op I went with it. I have read but please bear in mind that I am no expert that it is quite rare to get Pagets in both breasts & this gave me some hope at the time, it does happen I have heard but it is extremely rare - a bit like Pagets itself. Please feel free to msg me anytime & I will respond pretty much straight away. Sue F was a comfort to me and I can only hope that I will be a comfort to someone else even if just as a listening post. My thoughts are with you & your husband and your children. Hope I can help in any way. XX Kahu
Hi Kylie, Firstly I just wanted to say Kylie that I am very very sorry to hear about your diagnosis and that it is okay to be scared as I know I was when I first learnt about my Paget's disease. I was pretty angry at first that 3 doctors missed it and I don't want much television so I had never heard of it. Then when I heard of it and googled the subject it would appear that a flaky itchy nipple was something that was quite necessary to have investigated. I think I found on the internet a couple of shows that had been aired on tv - so note to oneself was immediately to watch more tv & work less :). Anyhow I found great comfort in the support of women from this site and it meant a great deal to me. There were those nights when I lay there unable to sleep and I was very frightened. However I placed a great deal of faith in my surgeon, she was simply wonderful and my husband and I took the journey together. It was recommended that I have a mastectomy as I had Pagets and DCIS which was through the breast so the hope was that I would then have the lymph nodes tested to see if further treatment was required. I worked very hard to stay positive and whilst there were times that this left my side most of the time I said well I could have been 18 or 25 or 30 & this helped me personally. It isn't for all and it's a journey that everyone handles differently. I had the mastectomy, the nodes were tested & yes it was a scary time waiting for the results. I was personally terrified of the radiation. I thought I can do the chemo, I can do the hair loss, I will be sick but the terror of the radiation almost immobilised me. So I used the waiting time to focus on what I loved, my family, birdlife, nature & I read other women's stories and experiences and tried to make myself strong that way. The end result was that I didn't need the chemo or the radiation therapy. Yes I was minus a breast and I did not choose reconstructive surgery as I felt for me personally I didn't want to put myself through anymore than I had already gone through. Pagets is quite rare and at the time I wanted to know more and more as I think I wanted to take some control back but not too long before my op I went with it. I have read but please bear in mind that I am no expert that it is quite rare to get Pagets in both breasts & this gave me some hope at the time, it does happen I have heard but it is extremely rare - a bit like Pagets itself. Please feel free to msg me anytime & I will respond pretty much straight away. Sue F was a comfort to me and I can only hope that I will be a comfort to someone else even if just as a listening post. My thoughts are with you & your husband and your children. Hope I can help in any way. XX Kahu
- Hi Sue, Thank you so much for responding your kind words and thoughts are greatly appreciated. It's really nice to hear from someone who has been diagnosed with Paget's of the nipple. The last couple of weeks I've been trying to research and find information on this rare cancer. With no family breast cancer history this was most definitely a shock. My husband and I are trying to be really positive. If it wasn't for our beautiful baby I doubt I would have discovered my cancer until quite possibly much later in life. With the discovery of high grade DCIS as well I think this really helps us with making decisions on what to do next. We feel when dealing with a rare cancer that no one has a lot of knowledge or experience with and being under 40 with a young family I think the stress and anxiety by just wait and see would drive me crazy. We have been lucky so far to catch cancer before it's invasive and if we can heavily reduce any return by having a dbl mastectomy now and avoid radiation/ chemo and never-ending testing. My biggest fear at the moment is imagining that in 2, 5 or 10yrs time I would need to sit our girls down for an awful talk and say 'if only I had removed my breasts at the beginning'. Hoping your life now is full of enrichment of happy occasions. Warmest regards, 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
- 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 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 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 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.
