Worried I have Pagets

Hi Sunday girl 

I am a young 53 who saw your question and felt I had relevant experience to comment. I hope my information doesn’t stress you but it sounds like you are pretty convinced you have Pagets.

i was diagnosed with Pagets breast cancer in March. I had a small spot on my nipple appear which was a little itchy. I went to my GP as I’d had DCIS (pre-cancerous cells in that breast 7 years ago). They gave me cream which didn’t clear it so referred me to breast clinic. I had a punch biopsy which was just like a pin prick. They did a mammogram and ultrasound but couldn’t see anything. I got the results 2 weeks later not expecting it to be anything but was shocked to hear I had Grade 3 Pagets breast cancer. I then had a stressful 2 weeks of tests to see if it had spread anywhere but fortunately not. Because of my previous DCIS they recommended a mastectomy with reconstruction which I had in June. 

So I send virtual hugs and hope the time goes quickly between hospital appointments as the waiting and wondering is almost worse than the diagnosis as you know what you are dealing with once diagnosed. 

HI Laurels 66

Thank you for your reply. You have been very helpful. My husband thinks im being negative thinking this is what I have but im not sure what else it could be. Like you said its the not knowing and waiting. I will keep you updated if that is okay.Thank you again and I hope you are recovering well x

Hi 

Try and stay positive and please let me know how you get on. Fingers crossed for you.

xxx

Hi ,

I have had a similar experience. 

Last August I went to GP and consultant with similar rash. I had BC in that breast in 2012(left side) so was sure it was back. Consultant was suspicious that it might be Paget's and did punch biopsy at the side of the nipple. The results came back negative and I was told it was ezcema. They gave me steroid cream but this had no affect. GP then suggested it could be a psoriasis patch since I have had scalp psoriasis for many years. He told me to apply the same ointment I use for my scalp and within a couple of weeks the rash went away.

I really don't know if this rash was a coincidence or not but a few months after this left-side scare I was diagnosed with cancer in the right breast. 

Hope this doesn't scare you too much but for peace of mind get them to examine both breasts. I wish I had so that the right-sided cancer would have been caught a little earlier.

I think my biopsy results took about a week to come through.

Hope I'm not making you worry even more but just had to reply when I saw your post.

Let us know how you get on. 

Sorry if I tagged the wrong Sunday girl in this post.

I meant to try to tag 

I think I replied to 

Thank you WeCanDoThis...its good to hear other peoples experiences and thank you for taking the time to reply. I will keep all updated and I also hope you are doing okay yourself xx

I had punch biopsy yesterday and go back 29th August for results. x

Hi Laurels66 

i have padgets and am considering a mastectomy with reconstruction would like to know more on what type of reconstruction you had and your experience.

Sunday girl - waiting for results is the worst feeling in the world sending positive thoughts , I’ve had 2 lots of surgery so far, mammogram and ultrasound both clear. I have now been told that  I have radiology occult disease which means that both these tests will not detect anything.  It looks like this is a common characteristic of padgets.  I have padgets,DCIS, and invasive ductal cancer I have asked for a mri as this is routine in other countries but this has been refused.

Hi

sorry only just seen this so don’t know if too late with reply but I had a DIEP flap mastectomy. This was with immediate reconstruction. A long op but I seemed to cope well (so they told me!) and was up and about next day - if slowly due to very tight stomach. The tummy wound was wider than I was expecting but pretty neat. Had op 6th June and probably took 8 weeks to feel ‘recovered’ - then I started chemo but Paclitaxel which seems to be one of the better ones - just had 3rd dose today. Hope this helps - have you decided what you will be going for?

Regards M x

Hi

thankyou for your reply I’m considering the same option and have been referred to another hospital that can do this so more waiting, my appointment not until the end of September. Do you have any advice on what I might not have considered? 

Hope the chemo is going ok how many sessions do you need? 

Regards K