Hi, I’m new here and not really sure if I’m doing the right thing or not, but I’m driving myself mad !
I have a very small (2mm) area of ‘crust’ on my right nipple. Been there for approx 2 months now. GP gave steroid cream for 3 weeks to see if eczema and no response or change. I have now been referred to Breast Clinic and have an appointment next Friday.
My mum passed away aged 50 from secondary BC, and I am just coming up to 46. Other than the crust, slight dimple on the under side of the nipple and some on/off pain, I don’t have any other symptoms, but I have convinced myself it’s Paget’s disease.
Can anyone tell me their experience of the same sort of symptoms (good or bad). I’m worried because there isn’t much to look at and the GP couldn’t feel any lumps, she just wanted to be extra cautious due to my family history. I’m scared they won’t investigate and I’ll just get told it’s nothing (which obviously would be amazing if it is nothing).
Can I request a biopsy if they don’t do one or would that have to be private ?
Thank you for any help, I feel like I’m rambling lol
Hi @callie,
Welcome to the forum - we hope that you find it a supportive and reassuring place. I’m sorry that no one has replied to you yet, but hopefully someone soon will be able to share their experience with you and help answer your question.
If you’d like to talk through this with one of our nurses, or you need support, have any questions or even just want to chat, you can reach them on our free helpline 0808 800 6000. We’re here if you need us.
I was diagnosed with Paget’s disease at the end of January. I had initially went to my GP in November with a crusting which I had for a few months and a heavy feeling in my breast. I seen at the breast clinic the next again week & told everything looked benign (had a check & an ultrasound), I was 33 and had a lot of “young” comments. As it had only been a week since I had started using steroid cream, they asked me to keep using the cream & they would follow up with me in January.
I had a follow up call in Jan & as nothing had changed I was offered a biopsy. I was told at my biopsy that they still thought it was eczema but wanted to check. I think if I wasn’t offered a biopsy I would have asked for one or had it done privately - I felt there was something wrong.
Fingers crossed it’s all nothing happy to chat more
Hi @brox , thank you for replying, I really do appreciate it. I hope you’re doing well after your diagnosis, and treatment is going, or has gone successfully
Did the crust on your nipple change at all over time or did it just stay the same ? And did you have any other underlying lumps which needed investigation ?
My GP just kept saying she thinks it’s nothing (she was very good and I was thankful for the referral, I’m not knocking her at all) and I’m worried the hospital will do the same.
Having read quite a bit on Pagets (I know I shouldn’t ) it does seem to get missed on mammogram and ultrasound, biopsy seems to be the way to go.
Thanks again for replying, it’s made me feel a bit better prepared for next week, and that I need to see what they say about tests before I give them my own worries x
@callie you’re welcome. I remember searching this forum for the good and bad on it like yourself & I didn’t find much.
I felt it got a little better then would go back to how it was but looking back I actually think I was trying to convince myself it was healing. I had a bit of heaviness in the breast which only came up in the time waiting for my GP appointment.
I didn’t have any lumps. After my results I was told pagets normally indicates there is something else going on. I had a mammogram straight after the results which did show something. After biopsies of that area I was diagnosed with high grade DCIS (known as stage 0).
Hope all goes okay at your appointment. I know pagets is rare, fingers crossed it all goes smoothly Happy to answer any other questions you have
Hi @brox , I have had my appointment today and been discharged. I have had a mammogram and ultrasound and they have shown no areas of concern. I was examined and have been told my crusty nipple is probably a milk blister. I’m relieved that everything appears to have come back negative scan wise but I’m not convinced that’s what is going on with my nipple as I haven’t had milk or breast fed for 17 years ! I will give it a bit more time and hope it clears, if not I’ll go back to the GP and try to request a biopsy,
I just wanted to thank you for replying to me, and answering some of the questions no one else seemed to have the answers for, it made a massive difference to me
happy to chat more
) it does seem to get missed on mammogram and ultrasound, biopsy seems to be the way to go.
I will give it a bit more time and hope it clears, if not I’ll go back to the GP and try to request a biopsy,