Paget's disease

Hi Liz, Your welcome ! Have a lovely week. Kylie

Hi Kylie , I was diagnosed with my auto-immune diseases after the birth of my youngest child. I was 32 and I am now nearly 60. What I have is rare but the problem was my muscles were so weak I couldn't lift him . I had two other kids aged 5 & 7 at the time . I didn't know why but I couldn't feed the youngest from this same breast that is a bother now . It was like one had milk and the other didn't . I gave up and put him on the bottle. I mentioned this to my daughter before I had seen your post . I didn't enquire at the time and didn't mention this to surgeon . I will now so thanks so much for telling me this I will ask for more testing when I go tomorrow. Just hope he is receptive . Thanks again you have all been so helpful . Liz4

Hi Liz, It's really great that you have logged into this site as there are plenty of women here to listen, support and help with personal advice where possible. Goodness you certainly have a lot to deal with at the moment. Stay strong, positive and attack each day with a huge smile. Good luck with everything hope your next test turns our all ok. Kylie

Hi Liz, It's really great that you have logged into this site as there are plenty of women here to listen, support and help with personal advice where possible. Goodness you certainly have a lot to deal with at the moment. Stay strong, positive and attack each day with a huge smile. Good luck with everything hope your next test turns our all ok. Kylie

Hi Kylie,

I don't know how to answer your question as it is a personal thing. But I must say I am living in constant fear after removal of my right nipple, plus half of my right breat and 35 treatments of radiotherapy and now I have a fibroadenoma in my left breast which has come up suspicious for the last two years. I am coming up for 5 years in april and still worried all the time. I have a lot of other health problems too. I have multiple sclerosis, osteoperosis, diverticular disease among other things. I am on a Tysabri infusion every 28 days for M.S. which makes me prone to infection.

I wish you all the best and I hope you can come up with the best plan for you.

With all my blessings 

Liz xxx

Hi Liz4 My name is Kylie and I'm 38yrs old. Just over 6wks ago I was 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. The last 6 weeks has been constant appointments and tests ie: ultrasounds, MRI's, biopsy of the lymph glands, full body & bone scans plus the removal of my R nipple and half the breast tissue. The original ultrasound and MRI only picked up possible imaging of the Paget's and missed the DCIS completely. Really the only thing I can advise is trust your "gut" feeling and really push your GP's, surgeons etc to run as many tests/ biopsies as you require to find the answers. If I hadn't pushed I wouldn't have had a dermatologist do the nipple punch biopsy. As I was still breast feeding it only took me 6 days from Paget's diagnosis with drugs to stop the lactation process that I had both my nipple and partial mastectomy surgery which also discovered high grade DCIS. Unfortunately moving forward I can either play the wait and see game and do regular scans and check ups with all the stress and anxiety involved or seek peace of mind and remove both breasts and have a reconstruction. Hope this helps, Kylie

Thanks Sue . I was wondering if anyone here had other health problems when they were seeking diagnosis ? I have a couple of rare (ugh) auto-immune diseases . One of them involves the muscles causing weakness & wasting . I dropped a great deal of weight a couple of years ago and I thought it had stabilised but its going down rapidly again . I am supposed to have gastroscopy and colonoscopy to see if I have more issues going on. Have had so many cancer tests over the years I am worn out . My initial diagnosis has a high rate of cancer . I have the crusting again and odd shape to the nipple . I saw on the US site that an MRI was often used with Paget's . Should I push for that if he says it is all clear from the biopsies . If its rare and unusual to have it outside in then its bound to be me . Lol . Just want to have right things to ask as I have the feeling I will need to push this further . My GP hasn't even enquired what happened . I don't want gastro testing til I get this sorted sorry for the long post . Will let you know results later this month . Thanks .

Hi jk, That's how I feel . See surgeon on 24th march . Support is much appreciated. Lv

Hi again Liz4 All I can say is don't stop asking questions from your doctor, dermatologist or whoever, until you feel happy with what they tell you. To me, it sounds like they are giving you a real run around, which is not what you need. Hope you get some straight answers when you see the doctor in three weeks.

So good to hear that you are getting to see a surgeon. I agree that you should see whoever it takes until you get answers. Glad that you have found this site helpful, as I did too. Thanks for your update Take care Jill