Newly diagnosed with Pagets

Merianneb1

Hello there, I was recently diagnosed with DCIS and upon further examine was also diagnosed with Pagets. I found out the final piece last Friday and meet with my Dr this coming Thursday to talk about everything and come up with a treatment plan. But I have a question for anyone diagnosed with Pagets since I know it is rare. I am now experiencing terrible itching in the area. I have to wear a sterile pad or large bandaid to cover up the nipple area since everything aggrevates it so I don't know if the itching is a reaction to the tape on the bandage or actually the Pagets. It seems to have gotten much worse since having a punch biopsy last week. I am going to call my Dr today to see if anything can be done but in the meantime thought I would put this out there to see what others have experienced.

MBPooch

Hi Merianneb1 -

Sorry to hear of your diagnosis, I was diagnosed last October. Wish I could provide more insight but I never experienced any itchiness at all, not even after punch biopsy. This site is a great resource though for any questions you have throughout your journey or just to know that you're not alone. Hope you have gotten some relief and get some answers at your appt tomorrow.

Michelle

Katc765

HI. I was just diagnosed with Paget's yesterday. I've been dealing with the itchiness off and on for about a month now. I am meeting with my surgeon Thursday.

Merianneb1

I am sorry to hear about your diagnosis. Pagets can be uncomfortable. I have been dealing with the itchiness for about a month and also feeling like my skin is crawling at times. I have been using Benadryl cream to help with the itchiness. I am a little over a week away from my mastectomy and ready for this to be gone.

Moderators

Paget'sWe welcome you both, Merianneb1 and Katc765, and sorry you have to be here. You may find this page helpful to better understand Paget's. For example this is from this page:

Paget's disease causes the skin on and around the nipple to become red, sore, and flaky, or scaly. At first, these symptoms tend to come and go.

Over time, symptoms of Paget's disease usually worsen and may include:

• itching, tingling, and/or a burning sensation
• pain and sensitivity
• scaling and thickening of the skin
• flattening of the nipple
• yellowish or bloody discharge from the nipple

We're all here for you!

Katc765

I will have to try the benadryl thanks. Good luck with your surgery. I hope you have a quick recovery.

erika138

Hey everyone! My name is Erika, 37 years old. I was diagnosed with Paget's Disease of the nipple (right nipple) on Jan 9th, 2018. I guess it's stage 0. My mammogram/ultrasound came back normal. My MRI showed NO evidence of mass/tumor. ALSO I have the BRCA gene. Currently I feel as if I'm running around in circles, screaming "WTF" into the air. I'm having a double masectomy with reconstructive surgery on April 20th. I'm nervous, afraid, anxious, upset, pissed off, and tired. Also I feel so LOST. Thank you for hearing me out...input/suggestions are welcomed!!!

Moderators

Hi Erika-

Welcome to our community! We know it's a lot to process right now, just try to take it a day at a time. We have a really great surgery forum where you'll find tons of info about how to prepare for your surgery, what to expect, and get recovery tips: https://community.breastcancer.org/forum/91. You can also check out our reconstruction forum: https://community.breastcancer.org/forum/44.

You're not alone, we're all here for you as you go through this!

The Mods

MBPooch

Erika138 - I was diagnosed with Pagets last October at 45 so know exactly how you feel. Looking back at my experience it really is a whirlwind but getting the diagnosis and deciding on treatment were the hardest parts for me. My MRI did indicate a small amount of DCIS - 1cm directly under the Pagets so great news for you that the MRI was clean! I had a BMX on Nov 30th with direct to implant and my recovery was very easy all things considered. Final pathology showed no surprises and lymph nodes were clean. There was no further treatment needed. The first couple weeks are the hardest but I was truly amazed by how good I felt and hosted Xmas Eve dinner for 13 and went up North with friends for NYE. You got this!

Kelligirl5

I was just diagnosed with Paget's today. I had been dealing with what I thought was eczema for about 2 months. I woke last week with a very large lump on the other side right near the surface. They have done multiple mammogram pictures and ultra sound of both sides. They sent me to a surgeon because of the lump on the other side and were not concerned about the small irritated rash. The surgeon is fairly certain the lump is just a cyst but once I pointed out the irritation on the other side she immediately did a biopsy. Mammogram and ultra sounds did not show any other concerns but I'm scheduled for an MRI next week and then a consultation. I'm just trying to gear up for what to expect in the next few months.

Moderators

Hi Kelligirl-

We're so sorry you find yourself here, but we're glad you've joined us. The first days and weeks after a diagnosis can be difficult, but just know that you're not alone!

The Mods

Bellwood

I was diagnosed with Pagets on March 12... needless to say, my life is now in a whirlwind. My oncologist and I have a plan of action with a lumpectomy on April 3rd with rad to follow about 4 weeks after surgery. The waiting is truly the worst. Some days I almost forget I have this, other days I think of nothing else. I am hoping to sail through this detour in my life and move on. This site is wonderful, thank you to everyone that takes the time to post their experience

Mnmcmil1

I think I might have Pagets disease. I've been having intense itching for almost a year. Next came the tingling/ burning/yellow discharge in my nipples. I went to a few doctors and had an ultrasound/ chest x ray done...They both came back negative. I had a punch biopsy done last week and my results are negatve . My doctor says its eczema.

I dont know what to do

Kelligirl5

Has anyone been diagnosed with JUST Paget's Disease? No underlying issues? So far I've had a Mammogram, two ultra sounds and an MRI. The MRI shows a small spec of something on the other breast but nothing where the Paget's was already diagnosed. Went back for an ultra sound today to see if we could biopsy the spot that showed up on the MRI but they can't find it. There is a slight chance it was actually a lymph node. Now I have to go back and have them find it on the MRI and take the biopsy that way. Curious how that even works and really hoping its nothing but I've yet to find anyone who has had no other issues outside of the Paget's?

Glynn93

Hello

I’m having a mammogram on Wednesday as suspected Paget’s ☹️

So sorry for your diagnosis it’s a terrible worry for myself at the moment can’t imagine how your feeling.

If your uncomfortable discussing I understand I just wondered what your symptoms for Paget’s were?

Best wishes

Merianneb1

I am not uncomfortable posting about my experience or symptoms. Mine actually started out about a year ago with just some dry skin in the nipple area and some cracking. I didn't think much of it to be honest. The skin would crack, peal and then heal again. Occasionally it would bleed but since it healed up I was all that worried. Then last November I went in for a physical and asked my Dr about it. He said it looked like excema and suggested using a cream on it and protecting the area. He also did a breast exam and scheduled a mammogram. During the mammogram it was discovered that I had DCIS but no one seemed to be to concerned about what was happening on my nipple, the assumption was excema. I had a needle biopsy and then an MRI to confirm the DCIS. I then meet with a surgeon about the DCIS and brought up the issues on my nipple. She suggest possible Padgets but thought it was no likely since it was considered rare. She went ahead and did a needle biopsy of the area and call me the next day shocked that it came back as Padgets. I have to say after the needle biopsy my symptoms got much worse. The area did not heal at all and pretty much bleed continuously and looked really angry. I had a bilateral mastectomy about a month later. All of the pathology after surgery indicated that neither the DCIS or the Padgets had spread beyond the area effected so I did not require chemo, radiation or even hormone treatment afterwards.

Glynn93

thanks you so much for your story, I’m glad your ok and you seem very brace to talk about it 💖

Mammogram tomorrow I’m dreading it to be honest I’m worried. Probably a normal reaction.

I have had itching and I mean bad itching on my left nipple for about 2 months I went to my gp last week and he has referred me to the Breast surgery clinic he also advised me to keep nipple covered/dressed and try to avoid a bra temporarily. He prescribed some cream to sooth the itch until we know what is causing it. The last couple of weeks I have started getting large veins around the nipple and through it too. It has become sore and when touched feels tender/ painful

Thanks you

Gingermiss65

Hi, I had Paget's of the Nipple, as well, along with DCIS and IDC. I don't know if I had so much itching. The nipple area did tingle. If that makes sense. I think for me clothing rubbing against it may have caused it to tingle more, rather than itch. It didn't bleed that much either. A few drops here and there on my bra. I hope you have an easy treatment and recovery. I didn't have the usual just removing the nipple area, as I had more than just Paget's. I had to have a mastectomy. Good luck to you. You can message me if you like, if you need to talk.

Shaz40

Hi .. I am 53 and recently diagnosed with Pagets on the right side. I originally sought advice for an itchy red nipple in 2015 and worryingly it's taken 3 years to be finally diagnosed following a biopsy. Mammograms and ultrasounds have not shown up anything. I went in for a lumpectomy a week later and suffered an infected seroma that then burst through scar and meant two '5 hour' visits to A&E. Attended my follow up meeting with specialist who informed me that she could not get clear margins without causing my breast to be unstable so have been recommend right mastectomy with immediate flap reconstruction using my own skin and fat. I have a sentinel biopsy beginning of Sept. I am struggling to come to terms with everything and scared because over a three year period 3 breast specialists told me it was eczema despite me querying Pagets. My latest letter states 43mm High Grade DCIS with involved margins over area of 6mm. Fearful of next result for lymph nodes. What a scary journey this is.

Merianneb1

I am sorry to hear you have had such a struggle. My breast surgeon originally thought I just had eczema but then did a biopsy of the area and it came back clearly Padgets. She was shocked but I am grateful that she did the biopsy. I also had High Grade DCIS so I went ahead and had a bilateral mastectomy with no reconstruction done. The final pathology report came back that all of the cancer was encapsulated and had not broken out of the cell walls so I did not require any further treatment. I wish you the best of luck with your future treatments.

Shaz40

Hello - I am new to this site and recently diagnosed. Itchiness of the nipple was my main symptom and unbelievably when I saw a breast specialist three years' ago I was told that Paget does not itch! I have spent three years using a safe moisturizing cream and cotton inserts to make myself as comfortable as possible. I had three main symptoms...redness / itching and a retracting nipple.

Elijahgirl

Hello ladies, it’s funny being on this site. Last month I had a prophylactic bilateral mastectomy due to a gene mutation and to immediate family members who just recently lost their battle with cancer.

They did a pathology report and I had Pagets Disease in both of my breast but just in the nipple.

My oncologist said I was the first patient that he had that had surgery first and then was diagnosed. He also said that not only is Paget’s disease rare but it was also rare to find it in both breast.

Have any of you gals just needed surgery and not radiation?

I had NHL in 2010 it was caught early but I still went through chemo and radiation. I know that they are two different types of cancer, but it seems most people with Pagets also received radiation.

I am hoping that since it was only in the nipples that surgery will be enough. Looking back I had several of the symptoms like itching and bloody nipple discharge.

I had the surgery to try to prevent getting cancer only to discover I had it anyway.

Sharrazan

About 18 month ago I had a scratch on the side of my nipple from a playful dog ! I have never really worried about this although from then until now it has remained red.

Last week I noticed a small amount of blood from what appeared to be a couple of pin prick type marks, and now I cant sleep or think about anything else having read about Pagets disease.

All I can think about is, if it is, I have wasted almost 2 years assuming it was just a scratch !!

Must stop googling, has anyone else feared the same regarding something similar.

I have got to find the strength to get an appointment as I am a total wreck !!! I am beyond terrified

Good luck to each and every one of you - you all are so strong ! x

cassandralyly

I am not sure if I have Paget because it looks like breast eczema which lasts for about several months. I am going to vist GP. I do not know what to do to make sure if I have Pagets or it is just breast eczema.

I am 29 years old. I checked the Internet and it shows that it is normally diagnosed from women after 50.

I do not know. I am worried to visit GP. What is worried me is also GP may say it is just eczema even if I have Pagets. I am really panic.

Could anyone give me some suggestions, please？

cassandralyly

Hi there. I have itchy skin for about 5 months. I have not visited GP. But I will.

I do not know what to do because I think GP may say it is eczema.

How could I make sure what disease I have?

MelissaDallas

Ask for a dermatologist referral. They can do biopsies too

Merianneb1

I would get in to see you DR ASAP and push to have a biopsy done on that area. When I was diagnosed I read far to many stories online about women who had very similar symptoms and it was brushed off as eczema because Padgets is "rare". But you are your best and only advocate. Mine was biopsed only after a mammogram already showed I had DCIS breast cancer. Ironically my breast cancer surgeon was skeptical at first the rash was Padgets but did a biopsy just to put all our minds to rest. She called me the next day at home with the results that it was Padgets. Now I don't know if this is always the case but my Padgets did get much worse after the biopsy but I was already scheduled for a mastectomy before that diagnosis came thru, but it did prompt me to not delay the surgery.

I will be honest and admit I ignored the rash for many months before I finally brought it up with my Dr during my annual physical. In my case it went way beyond itching skin. The nipple area would crack and bleed, I had to resort to keeping it covered in band aids and waterproof band aids in the shower. It would then heal up but a week or so later it would crack open again, each time never completly healing.

cassandralyly

thank you for your suggestion, I will see GP today.

Hope everything is going to be fine.

Hope all the women and their loved ones are healthy.