Paget's Disease of the Breast

I have fibro too so it's probably why I'm so exhausted all the time. I have just ignored this diagnosis for years. I'm not letting the docs put me on anymore drugs. The side effects always outweigh the benefits.

I am pretty sure my BC is back. I have all the same Pagetoid signs and symptoms as at first. Feeling hopeless. Using finals as an excuse to keep my head firmly in denial.

Thank you for your note. I am even more confused and concerned than before. So my unltrasound and mammo came back clear. Over the weekend though the nipple became worse with a blister and discharge. It still itches and the breast is still shrinking. The doctor did give me a referral to breast specialist but says theres nothing to worry about. How can that BE!!??

Cass: fingers crossed for you.  Hoping it is not a repeat.

Lou: I am confused too. With lumpectomy, it seems like they always do rads.  You don't know what else could be lurking in your breast,, because most cases of Paget's have something underlying in there. Like I had DCIS. Perhaps you should print off a few articles and take them along to your appt?  In the bag for your op tomorrow.

Momnorth:  glad you are seeing a breast specialist. Why can't they analyze your breast discharge? That makes no sense.  My BS tried to squeeze out discharge on me, (no luck) but it would have been looked at if he could have. Hopefully your specialist will order a biopsy.  And there are a lot of doctors who want to calm the patient by saying "oh it looks like nothing. Nothing to worry about".  Well, I'd rather have the truth than platitudes.  Two doctors told me "oh i'm sure it's not Paget's"  and it was. Dang it,, you can't tell by looking at it. My mammo and ultrasound and MRI were all clear too.   Hope you get your appt quickly. Keep us posted.

Hi ladies. I've been experiencing itching on my left nipple for a couple of months know to the point where I've scratched myself raw. Creams don't help. However I don't have any leaking or blisters. My question is do you have to have other symptoms besides the itching for it to be pagets?

Hello,

My right nipple has very itchy patches on the edges of the areola which can get very red, weepy and raw. I can't wear a bra without nipple covers due to the weeping & sensitivity in that area and it's been getting very uncomfortable to sleep on my right side. This has been going on for about 4-5 years or so from what I can remember - I'm only 19 years old! I've been prescribed steroid creams and antifungal creams through the years to try and clear up the patches, due to already having eczema issues. I even moisturise 1-2 times a day with the right kinds of moisturisers to not make the 'eczema' flair up. The patches seem to improve, though not really in line with when I've been using the creams, but always reappear and yet only really on that side and in a similar place.

Reading up on Paget's disease, I know it's super unlikely for my age, while at the same time it'd explain my issues and why they have persisted. It's a scary thing to think about and my anxiety levels have shot through the roof, though reading other people's stories have provided some comfort. Following shooting pains in my right breast and other twinges, as well as this flaring up again, I've made an appointment with my GP. Hopefully I can explain the situation and try and push for further checks, specifically a biopsy to put my mind at rest.

Hello everybody, I went for my mammo and ultrasound today. They couldn't do the mri because my doctor wrote the referral wrong. The rad tech could feel the lumps but they wouldn't come up on the mammo or the ultrasound. Weird. The implants were in the way. So the rad doc came in and tried. He was so funny. He told me that it's time to get the implants out so that I can start feeling better. Then he says, you've had your fun with them, it's time they go. So anyway I need the mri. But my insurance won't cover it. Oh well. They are going to charge me less than half for paying cash. So all of this anxiety and waiting for nothing so far. It was a great feeling though tactically have a doctor believe that the implants are causing the fibromyalgia like symptoms. Most will never acknowledge that bit of truth. Neither of the two docs I've seen seem a bit worried about me having pagets though. This seems to be the case from what I've read from everybody else.

Hi Everyone,

I've been reading through this board, and am hoping someone might recognize some of the symptoms I've been experiencing. I'm 28 and have had an issue with an itchy right nipple for about three months now. Some days it is itchier than others, but the nipple itself is always super sensitive to the touch (sorry for the super-detailed descriptions here!). This nipple has always had a crack in the center and a small piece of skin sticking out of it. I feel like that is now the source of the itching, but am totally guessing. I've also had an achy feeling in the side of the right breast and in my armpit that comes and goes. The ache almost seems hormonal to me - flaring up right before my periods and then calming down again.

I visited my gyno in March about the nipple itch and she sent me for a mamma/ultrasound. She said that it didn't look like Paget's or IBC because the breast/nipple were totally similar to my left side. No lumps either. It's still that way…no noticeable changes. The radiology place only did an ultrasound and found nothing suspicious. They focused the little ultrasound tool on the nipple for a while and still didn't see anything.

Anyway, I told my gyno that it's continued to itch for another month, and she wants to see me again. I've been putting hydrocortisone on it, but it doesn't seem to do anything.

Just wondering if my symptoms flip a light bulb switch for someone. Anyone experience something similar? My Mom swears she had an itchy nipple when she was younger, but said it eventually went away. No history of BC in my family.

My pre op today and been told I have to go to the nuclear medical centre for a nuclear injection. Now that's something new to me, feeling a bit apprehensive. Think it's used to trace to my lymph nodes during operation. Has any one else had this?

I also want to say that it seems that if there's no family history of BC then they seem to treat everything differently. Having family history can make the difference in whether insurance will pay for certain procedures or not. Lack of family history seems to make the docs not take symptoms very seriously. Never mind the fact that 80% of women with breast cancer have no family history. It almost makes me wish I'd have lied on my questionnaire and told them that everybody in my family hashad it so they'd take me serious.

Pirina:  i would get the MRI !! Get the doctor to write a proper report.

ComeLordJesus, We are all here for you. It sounds like you have a good plan with genetic testing and a second opinion. Please keep us all posted.

Thank you Moderators and Glennie19. I am happy that I am posting on here. I am going to inquire about the kinds of BC my family members had, that is a very good point glennie! I appreciate the encouragement and kind words. I have my second opinion appointment tomorrow and I will keep you posted. Praying for all of you xo

Hi Karen, mine never showed up in blood tests. It never showed up on mammograms nor ultra sound nor MRI scan. Can you not bring your appointment forward? You really need a biopsy to put your mind at rest.

Good luck Lou.

Just wanted to thank you all for your posts. There's so little information on Paget's online so it's been comforting to read about your experiences. I had a punch biopsy done last week after a diagnostic mammogram the week before. Mammogram showed thickened skin on areola only. Waiting for the results. I'm in my mid 20s and my mom died of bc in her mid 30s. If nothing else, this experience is forcing me to take my risk level more seriously. Prayers to you all