Paget's Disease of the Breast

glennie19

If I am reading this correctly, you are hormone negative and HER2 positive. Herceptin is usually given for HER2 positive patients. You may want to look around on the forum for HER2 positive people and talk to them. I was ER+ PR+ HER2 -,,, so mine was the opposite of yours.

Since you didn't have a mastectomy, are they talking about doing radiation? That is usual with Paget's/DCIS when you do not have a mastectomy. Also, if they are suggesting chemo, do they suspect something else is going on? Like IDC? You didn't mention lymph nodes? Did they do a sentinel node biopsy? What were those results?

ilaam

[update - surgery done - good news]

Hi all, so I finally went into surgery more than 3 weeks ago. Everything went OK : mastectomy for right breast + augmentation in both breasts. I find the result really beautiful and both breasts are even.

Now the serious things: I saw my dr 2 weeks after the surgery and happily, he told me that :

- every thing was taken off, clear margins, clear lumph nodes, just DCIS no invasive and the cells were unable biologically to go anywhere else.

- we did the right thing to remove the whole breast because other small areas of dcis were found and didn't show in MRI.

- this story came to its end, that it will remain history and I won't be worried about it .

Reconstruction of nipple/areola will be done in three months as well as prospective touching up although for now there's no need for that. No further treatment is needed as well. I hope I will never ever have to deal with that again. So that's it, I wanted to share the good news with you

glennie19

Very good news!!! Glad to hear this!!

Operaeva

Dear Illam, that was woundeful news!!!

I'm on my second day after mastectomy left with direct reconstruction with implant. In a lot of pain and somewhere worries... But your message here have me hope!

A bit nervous about the surgeon telling me he saved a small ring of my aerola to be abel to do nipple rekonstruction better. I truly hope this is safe with pagets....???

We'll see what patologist and onc specialist says later....

The took away hole nipple and surrounding aerola and also the whole breast and it's ducts of course under the complex.

/Eva

ilaam

Thank you all!

Operaeva, I hope you're not in too much pain. Everything will be ok soon. Glad that my message gives you hope

I really don't know about keeping a ring of the areola. My case is different as I had a previous surgery to remove the whole nipple areola complex and that's when they found DCIS. The pagets was already expanded on part of the areola and it was visible through the skin discoloration. Almost one month later, I had the second surgery to remove the whole breast. In your case, I guess getting clear margins should be reassuring. You'll probably get other answers here. Anyway, I advise you to forget your worries for now and focus on how to get better and get used to your breast after your mastectomy. That's not easy, I know, but you should try at least.

I hope you get good news as well, keep usupdated and I'm here if you need to talk/have questions..

pdj

(update)

Hi Everyone,

I had a meeting with doctors team today regarding treatment after surgery (results were paget/DCIS). No treatment, just monitoring and check-up every 4-6 month.

Huge to all.

lessharp

Pdj, that is good news! I'm sorry you had to go thru it all again...but glad to hear it was not invasive!

Langer

Hi everyone,

I was diagnosed with Paget's disease of the nipple yesterday. I'm going for an ultrasound and mammogram on Monday, then an MRI scan on Friday next week.

I have a planned vacation to Florida for 2 weeks then get back to results and surgery options. Not sure what is going to be removed yet. In total shock about it.

I've not been told what the options are yet but I'm really worrying about it. Have not slept.

I'm 32 and in Bristol, UK. x

lou23

Hi Langer, so sorry to hear your news, you must feel very worried at this time. For me the waiting is the worst part. I live in Leicestershire the hospital here was very good for me even though they hadn't seen pagets before. Enjoy your vacation and I hope all goes well for you when you return. Keep in touch. X

Operaeva

Sorry for your diagnosis Langer! I just want you to know that we are all here for you.

I' m 41 yrs old. Pagets pos biopsy feb-16. Neg mammo+ ultrasound + mri - which I'm thankfull for.

Although I chose to have my hole breast removed. Mastectomy with direct recontruction 3 days ago.

DCIS is seen with radiology in about 40-50%. Mri, though, is very sensitiv to invasive cancers but still not very sensitive for in situ (DCIS).

Pagets is beeing primary treated with BCT (breast concerving therapy) + rads or with mastectomy. My onc recommended a sentinel node too.

ilaam

Hi Langer,

I'm sorry you have to deal with that. I am 25 and went through this couple of months ago. Now I'm done with it and I got rid of Pagets/DCIS and I'm doing very well.

All cancers are not the same. I couldn't think like this when I was diagnosed at first. Pagets only or Pagets with DCIS is a very curable disease and its treatment is very simple when there's no invasive cells. Options are often : Lumpectomy + rads or mastectomy whith nothing after.

Unfortunately, we have many misconceptions about cancer that's why we get shocked when we get diagnosed. If I knew the lot of things I know now about breast cancers types I would not be that sad in the beginning and the shock would have been much softer. My onc (very experienced one) always told me not to worry and that this is not the bad cancer we hear about, this is totally curable. He said: "we remove the cancer and than you forget about it". I hope this recomforts you.

hugs

gmjdaj

Good Morning Ladies....! I have been having a itchy nipple since January. No crusting, no inversion, no discharge and no rash just itchy. I went to my OB who ordered a ultra sound in Feb which was clear. I went back and he basically laughed at me. I waited and now I went to my primary cause my insurance needs referral. She had me get a mammogram and refereed me to a Breast specialist and Dermatologist. My mammogram which I had yesterday was also clear. She said the breast specialist might not see me I am waiting on a call back from them. I have an apt with the dermoptoligist on May 11th. I just want the itchying to stop and if it is something I want to deal with it early. I am only 30 and have 2 babies.

Maya15

Hi gmjdaj, from my experience the dermatologist is the way to go. It's a very good sign that the mammo and ultrasound showed nothing and means it's likely something benign. But you still need to know what it is. I am young too (36) and I was so thankful that my dermatologist took me seriously. I did have crusting and discharge. The itching could be something like eczema, but best to have them do the tests to rule out anything more serious. My dermatologist first did a culture test looking for infection. When that was negative she did a nipple biopsy.

gmjdaj

Hi Maya15, My regular doctor said that is the best route as well. I just want to know what it is, I am kinda driving myself crazy. Thank you

PugetPaget

hello all.

I have a question for the group.

Little background- I just turned 57 and my mom had breast cancer at age 52. Last fall I had an isolated event of discharge from the left breast. In retrospect about the same time I noticed a small growth of tissue on the same nipple and itching. Work was really busy and I didn't give it a second thought. Saw my GYN in January. She did a breast exam and didn't notice the growth. I forgot to mention it. I left with her reminding me to get my mammogram. In Feb I had a mammogram and remembered to mention the discharge, itching and nipple change. They did view after view and during some of the "squeezier" ones quite a bit of discharge was expelled. The radiologist talked with me afterwards mentioning the C word and her concern that this could be Pagets and that she didn't want to miss anything. She referred me to a breast surgeon for a biopsy. I saw him 5 weeks later. He said he was sure that it was just a papiloma and scheduled me for an US and Ductogram the next week. He said that it absolutely wasn't Pagets because there was no erosion of the nipple. No papiloma was seen and again the radiologist stuck with her original thoughts saying that there IS erosion and weeping on the nipple. I am going back to the surgeon on the 29th. I'm hoping that he does a biopsy so that we can definitively determine what is going on.

My question- did any of you have these types of symptoms- small adenoma looking growth on the tip of the nipple, itching and discharge with no skin changes on the areola, no scaling or other eczema looking changes?

I'm wondering if this is just the very early stage of Pagets.

Hopefully a biopsy will be done next Friday and I'll have a definite diagnosis.

Thanks in advance. I admire your courage and love and care shown for each other thru such a tough time. Love to you all!

Maya15

I didn't have erosion of the nipple or any changes to the areola, just flaky skin with a discharge. My gyn didn't suspect Pagets and didn't refer me for mammogram/US (I am too young for routine testing). But she referred me to a dermatologist who was suspicious. That led to a biopsy of the skin on the nipple that diagnosed Pagets. Since your mammo didn't find anything, there's probably nothing to worry about, but you should have the biopsy to find out what it is. If you have no luck with the breast surgeon, I would recommend seeing a dermatologist, and tell them what the radiologist was concerned about.

Langer

Thank you Lou. It's so reassuring to hear other people have been going through what I am going through and coming out the other end ok! I am nervous with the wait but going to have to try and push it out of my mind so that I don't ruin the holiday. I'm going with a group of wonderful people through, so I know they'll distract me.

I'm at RUH in Bath and they are amazing there. I know I'm in good hands. Hope everything is going well for you now

Thanks for the support. X

Langer

Hi Ilaam,

That has made my morning reading your message and hearing you're doing well! Super reassuring, so thank you. I slept like a baby last night after doing some reading yesterday (the night of the diagnosis day, I woke up at 3am having a panic attack which is a new experience for me)

Looking forward to chopping the bastard off and moving on with life. Ha ha! Thanks again for the support. Xx

Langer

Hi PugetPaget,

I've just been diagnosed with Paget's and had no scaling,eczema or other symptoms besides a discharge/bloody nipple that wouldn't heal over, and slight occasional itching. It looked so normal that the boobie expert man at the hospital gave me steroid cream thinking I had dermatitis. There was no erosion or change to the shape! Two weeks later I went back as it obviously didn't heal, and he performed a biopsy. A week later, here I am with Paget's and going in for mammogram, ultrasound and MRI next week for further investigation. I think Paget's can be different for everyone. Not everyone will have the exact same symptoms (from what I've seen using Google images!

Glad you're going for the biopsy. (Take some painkillers just before you have it done, when the anaesthetic wore off, it wasn't too nice) Saying that it was very quick and painless during the procedure.

Really hope you get some answers soon. (And hope it's nothing serious) Let us know how you get on. X

Langer

Hi gmjdaj,

I'm 32 and my partner and I were going to start trying for a baby towards the end of the year. We may still do if I'm all cured by then.

I had no typical Paget's symptoms either. Just a crusty discharging nipple that wouldn't heal over. Kept sticking to my bra and ripping the nipple. This started last December. I had occasional slight itching but nothing else. I went to the doc who referred me straight to the breast unit at the hospital. I was given a steroid cream at first as they thought I had dermatitis. Obviously I didn't have the typical symptoms of Paget's. The biopsy is magic. Within a week they had finally found out what is wrong..and day before yesterday I was diagnosed with Paget's. Good luck with the appointment. Let us know how you get on.

Operaeva

I want to stay in contact with all of you, and are very thankful for this community!!!

Ilaam: Do you have a permanent silicon implant? How is your feeling and look? How is the pain/discomfort?

I'm still at hospital with pain, drainage and the strap over my thorax keeping implant down... But gradually improving.

gmjdaj

Langer,

I will have an apt with the dermatologist and then also yesterday the breast specialist called me after they got my results and even though my ultra sound and mammo were normal they still want to see me. Which honestly I am happy about. I will push for the biopsy. How does the biopsy work? I did put cortazone cream on my nipple and its not itching right now.

Thank you for all your help.

Langer

Hi gmjdaj,

When you go in for a biopsy, they clean the nipple area with an alcohol solution (you're lying down on the bed), then the surgeon will inject the area with anaesthetic so you won't feel anything. I couldn't bear to watch what he was doing as I'm squeamish, but from the look of my nipple a few days later, he made a little incision with a scalpel on the bottom of my nipple and took three small samples of tissue from underneath my nipple. (I felt him do this three times as wasn't looking! Ha ha!)

He then put a stitch in to close it and put pressure on it for a minute before sticking a dressing on. I refused a paracetamol when the nurse offered it but regretted it 20mins later when it started stinging! Make sure you take some painkillers.

The whole process was pretty quick. A week later I went in for the results and was diagnosed. They are really good about it all.

Is your nipple raw on top and sticking to your bra etc? (Mine was just slightly wet and would bleed after getting stuck on my bra...until I started wearing dressings) It just started getting worse over time. Only slight itching and the steroid cream they gave me didn't heal it (obviously).

I hope that yours is just dermatitis. Fab news on the all clear of the mammogram and USS. I've got a mammogram and ultrasound booked for Monday. Not looking forward to the mammogram as my boobs are really sensitive (and I have implants!) Is it painful?

Maya15

gmjdaj -- my experience of the nipple biopsy was similar to Langer's except they basically took a "slice" off the top and I didn't need stitches. It was painless while they were doing it but be warned there are lots of nerves there and it was excruciating after the anesthetic wore off. Pain was gone within 24 hrs though.

Langer -- I won't lie, the mammo was painful for me. Because I already had biopsy proven Pagets they took a bunch of extra images. BUT you just have to keep in mind it's of very short duration and once they're done the pain goes away straight away.

Langer

Maya15,

Oh noooo. My boobs have always been so sensitive and I'm just about to have the monthlies so even more so. I might have to get some extremely strong painkillers this weekend. My nipple is so sore too. Guessing they'll take more for me too as I have just been diagnosed with Paget's too. Oh pants. :'-(

Thanks for letting me know so that I can gear myself up for it. X

lou23

Pugetpaget, did they do a biopsy for you yesterday? I hope they did it seems that some times this is the only way to diagnose pagets. Hope all goes well for you.

gmjdaj

so just reviewing my mammo and it said that I have fibroglandular tissue behind the retroareolaon both sides. What could this mean? They said my mammo was normal.

PugetPaget

To all-

Thanks so much for all your replies and insight. It is really interesting how different and unique Pagets has been for each of you.

My followup appointment with the breast surgeon is this coming Friday, the 29th. Thanks so much for the information about what the biopsy procedures were like for you. And especially for the tip to premedicate- always a good plan, lol but I wouldn't have though of it.

I'll let you know how it goes. Thanks again!

Langer

Good luck PugetPaget! You're very welcome. Seems I'm only a few steps ahead of you so if you have any questions along the way, feel free to ask. x

ilaam

Hi Operaeva,

Yes I have a permanent silicone implant; The feeling was kind of strange in the beginning but now I'm getting used to it. Although it's been only a month, I don't feel that I have a heavy object over my chest. The implant is getting soft too. I can move my hands easily in all directions. No more pain at all. I can tell that in my case the pain was intense only during the first week (post operation) the second week I used analgesic too and mostly to prevent pain (paracetamol) and then I didn't need it anymore. During the week 2 and half of the week 3 I haven't had real pain but it hurts when I lie down on bed or get up mainly because the muscle is stimulated. If that happens to you you can find a way/position to get up without pain. I had two drains in the reconstructed breast, I removed the last one in day 7 after the surgery. Now everything came back to normal and I sleep on both sides. I had a biopsy on my safe breast nipple and believe me it's the only thing that slightly hurts me now. I only I avoid raising heavy things.

The look is ok too. We can judge the look 3 months after the reconstruction. But now it is good. The dr told me to start massaging it softly in circular moves from week 3. It is normal to have some inflated areas in the beginning. In my case I had small edemas between my breasts and in the outer side of the reconstructed breast. When they were gone a beautiful shape has showed up so don't worry now if the borders are not regular. The reconstructed breast doesn't move like the native one when I move. I hope this will be re-established soon. It is also kind of numb, but now I can start feeling the skin especially in the borders. With time skin nerves will regenerate and the feeling will be better, not like before but it is not bad when we get used to it The nipple reconstruction will improve the look. Let me tell you that now when wearing a bra the look is more than perfect.

Take care, hugs