Paget's Disease of the Breast
Comments
-
So I went for my biopsy today, and the breast surgeon actually refused to give me a biopsy. She looked at my breast and immediately ruled out nipple adenoma, which my radiologist thought it was. She said it was a "clogged duct", and "promised" me it was not Pagets. She said she would inject me with lidocaine and incise what I've been calling a secondary nipple growth on my actual nipple. I asked her if she would please biopsy the "mass" that was found behind my nipple, and she said, "It's just not necessary to biopsy that. I see 2 cases of Pagets a month, and I promise you, this is not Pagets. The mass seen on ultrasound is just debris from the clogged duct." I explained that I just wanted the biopsy for peace of mind, and she said, "There's nothing to biopsy". SO...I let her proceed according to her plan. She injected me with lidocaine, which hurt, but not too bad. She nicked the external lesion, or whatever you'd call it. It immediately started spurting pus, which she said further confirmed her diagnosis of blocked duct. I asked her why I had been experiencing itching and burning in my breast and she said that it was because the clogged duct was creating an infection response in my breast, which was causing these symptoms. So home I went with a bandage and a sore boob. Not really sure what to think, but I will watch it closely over the next few months to see if it recurs. I'm frustrated that they didn't biopsy it, especially since they were already in their with the lidocaine shots, but after asking her to biopsy it twice, and her saying no, I gave up.
Thanks to all of you who have communicated with me about this. I have been scared and nervous, and you all have been a great sounding board. If anything changes, I will be back!
0 -
Take care Hill. Keep a good eye on it. Take pics if it acts up, and maybe consult a dermatologist in the future. ((hugs))
0 -
Thanks Glennie, I'm definitely keeping an eye on it..I'm 47 years old, and haven't lactated in 12 years, and I thought blocked ducts were only for lactating women! Anyway, thanks again. Good luck to you, too. Stay well..
0 -
Sorry to hear that Hill, it would have given you Peace of mind if she was right, but definitely keep an eye on it. Wishing you all the best.
Lou.
0 -
Thanks a lot Lou...definitely keeping my eye on it!
Hill
0 -
Hi everyone, hope you’re all well. Just a quick update, I had my return visit to the hospital today, after trying the cream for the last four weeks (unsurprisingly, it didn’t make any difference).
I saw a different doctor today though, she was the head breast surgeon in the hospital. Not sure if that’s just a coincidence or not. Thankfully, she’s did the biopsy! I was so relieved that she did. She hopes to have the results in next week, just before Christmas, so I’m hoping to know by then. Like last time, there was no mention of paget’s, or anything else. She seems to want to wait till the results are in before discussing anything in detail. She only mentioned that there could be a possibility of needing surgery, or it could just be dermatological.
Just a couple of quick questions. They might sound daft but I just wanted some other opinions. For some reason, I was expecting her to take the biopsy from the centre of the irritation but she took it from the edge. I know it probably makes no difference but for some reason it surprised me. Is it common for it to be from the edge? Also, later on in the day, I wanted a peek at it because I’m nosy. She had mentioned there would be a spot of blood, but my plaster was covered in blood and when I took it off, it was still bleeding. This was maybe 6 hours after the biopsy. I had to put pressure on it to stop the bleeding before putting a new plaster on. Is that normal?
Huge thank you again to you all, your information and advice has been so helpful, and much appreciated x
0 -
Hi Nic, sorry the cream didn't work but very pleased you have had a biopsy, my biopsy wasn't took from my sore, I was quite worried at the time incase they had took it from the wrong place !! And yes it did bleed a fair bit.
That's good only a week to wait for results, mine was to take 2 weeks and it took 3 !! It was terrible waiting for the results but I knew what the result was likely to be as my grandmother had Paget's so I knew all the symptoms.
Wishing you well and let us know how you get on.
Kind regards
Lou.
0 -
Hi Nic,,, I can't remember exactly where my biopsy was done. Perhaps it is possible that they do it on the edge to see some "normal" cells and some "abnormal" cells. Just a thought,, don't quote me on this! And I honestly can't remember about the bleeding either, sorry that I'm not any help on this.
Glad you will be getting the results so quickly. Best of luck and do keep us posted.
glennie
0 -
Hi Lou and glennie,
Thank you both for your replies, I really appreciate them. Glad to hear yours was similar Lou, it did have me a bit worried. You could be right glennie, about the “normal" and “abnormal" cells, that makes sense.
I'm hoping the results will be that quick but I'm not holding my breath, I think it will take longer. I'll keep you all updated though.
Thanks again, Nic.
0 -
I'm convinced I have Pagets based on SO much research and 4 months of a sore on my nipple that hasnt healed with antibiotic,cortisone and anti-fungal creams. It matches perfectly all the pictures and symptom lists of Pagets. I am 65, have a family history of breast cancer. Have been taking ralaxofine for years as a preventative of invasive b/c. This nipple is now oozing serous material that is blood-ish. It crusts over in golden colored scabs that fall off leaving a raw looking red mark on the nipple...then the routine starts up again of scabs that fall off and grow back. I have an apt with my n/p in 4 days and plan to insist on a biopsy. I want to take faith in the statistics of how rare it is, but I cant match it up to anything other than Pagets. Had a negative mammogram in Sept, but find no solace in that since it apparently doesnt show up. Has anyone else been this sure of Pagets and been wrong? thanks..looking for a lifeline.
0 -
Hi Molly, sorry to hear you are worried about your symptoms, I think your right making sure you have a biopsy , I hope you are wrong there have been quite a few people on here that were nicely surprised they were wrong I hope you are one of them.
Kind regards
Lou.
0 -
Hi, Molly.
glad to hear you will get a biopsy. It's the only way to know for sure. There have been women on here, who were sure that they had Paget's and the biopsy was negative. I hope you are one of them.
do keep us posted.
glennie
0 -
Hi Ladies, Just diagnosed with Pagets today after long symptoms (2 yrs roughly) two biopsies were taken by my dermatologist. The one area which wasn't suspect to me also tested positive. My dermatologist went ahead and scheduled a consultation for 1/5 with an oncologist for me. I haven't had any diagnostic testing yet.. so that and waiting for the results will probably be worse than waiting for the biopsy results. Just wanted to say hello and look forward to any advise you can give. I'm 41, symptoms were a flaky, crusty nipple. Rather the bottom of the nipple, not directly on it. No discharge etc. Symptoms didn't come and go, were pretty much there always. Never progressed to anything worse in the 2 years.
0 -
Josie,
Sorry that you've joined our little club but we're happy you found us. You are spot on - the waiting is the worst. I'm someone who likes action when a problem is identified so waiting for testing and results was painful. And to be honest, I died a thousand deaths in that time. My symptoms were pretty nondescript and didn't get better or worse during that time. In fact, while I think it was going on for 6 months, it could've been much longer. And I nearly forgot to mention to my GYN during my annual exam. I'm glad I did! She went right into biopsy/testing mode Good luck in the next few weeks getting things going. Come back anytime if/when you have questions or need some support. Do let us know how you make out.
Take care,
Kristen
0 -
Your symptoms are exactly like mine. Please insist on a biopsy. I went through a skin biopsy and the doc found Pagets. I'm waiting for my Immunohistochemistry tests. My doc has suggested masecotomy but I'm going for a second opinion after the new year.
I had my non healing wound for 3 years. It started as I was breast feeding my son. The wound kept healing and coming back. It wasn't painful except when touched. Nothing oozed. I ignored it far too long. I'm only 30 years. I had an MRI and CT SCAN. The MRI revealed another lump 1.6cm on the inner lower part of my right breast......i have been scheduled for an ultrasound guided biopsy to test the lump.
I'm really scared of what the future holds for me.
0 -
Thanks ladies. Not a club I expected to join for sure. The scariest part for me is waiting to find out what's in there.and planning from there. Hoping because the appointment on 1/5 is in a surgical facility, they get the mammogram/ultrasound going right away. Fingers crossed for everyone and thanks for listening.
0 -
Hope all goes well for you girls, keep in touch
Kind regards
Lou
0 -
Josie & Moryn: sorry to hear that you are joining our little club. The waiting sucks! We are here for you if you have questions or need to vent!
Please keep us posted.
glennie
0 -
Glennie and Lou: Thanks for your concerns. So they're setting me up with a 3-D mammogram and ultrasound. No mention of biopsy yet. I was surprised. I assumed they would biopsy the nipple to find out if it's Pagets, then order those tests if it is. Even if they dont find anything on these tests I feel that I need a biopsy since this has been going on for 4 months. Any thoughts?
0 -
Hi Molly, I would feel happier having a biopsy I would push for it. Good luck.
Regards Lou.
0 -
Push for the biopsy. The other tests are helpful to see if anything else is going on,,, I had mammo, ultrasound and MRI,, and the only thing that said Paget's was the biopsy.
0 -
to Nic148: I came across this which might explain the cut they took: Conditions closely simulating Paget's disease of the nipple include eczema, erosive adenomatosis of nipple, Pagetoid basel cell carcinoma, Bowen's disease and melanoma. Hence full thickness tissue biopsy from the edge of the nipple is essential to arrive at a pathological diagnosis.
0 -
So as the patient we have no control! I am scheduled for a 3-D mammography and ultrasound this Friday. I called a b/c surgeon's office to see about getting a biopsy and was told that it has to begin with screening tests. And that a biopsy sometimes needs to be done in an operating room. And that the soonest I can get an appointment just for a consultation is over a month from now. I am regretting that I didn't just go to my dermatologist in the first place as I think he would have done the biopsy!
0 -
a punch biopsy on the nipple doesn't need to be done in the O.R. The person answering the phone doesn't always know everything! They are probably thinking of "most" breast cancers that involve a lump that need biopsying. That is more invasive.
You could still go to your dermatologist and also follow thru with the mammo and the ultrasound.
0 -
Hi mollyrose,
That makes sense, thank you for sharing that. The whole process has been similar for me, I had to see multiple nurses/GPs before I could even get an appointment for the breast clinic, and even then I still had to try different creams before I was able to get the biopsy. It feels like such a waste of time. I know the procedure will be different in each place but my biopsy wasn’t done in an operating room. I met the surgeon in an outpatient room at my local hospital, it was just like a GPs office, and she did the biopsy then and there. Good luck for Friday, hopefully they go ahead with the biopsy for you. Keep us all posted.
Take care, Nic.
0 -
Hi Molly
My experience was the opposite of yours. My dermatologist did two punch biopsies in the office, and then referred me to a breast clinic for mammogram,ultrasound and consultation (this friday i go). You can go to a dermatologist to have this done. I asked them when scheduling my visit.
0 -
Hi everyone!
Well, this is my first post on this site. I am a little anxious posting on here but since I have been "stalking" this site, and specifically this thread for quite some time now, I thought it was time for me to post. Over a year ago, I started to notice itcing and flaking of my right breast/nipple. I chalked it up to eczema (as I have had that almost my entire life, mostly as a child though) and just put over the counter medications on it but it didn't seem to make much of difference and no changes happened. I seen my OBGYN about 8 months ago (6-7 months after first signs) and he gave me a couple of RX's to try (steriod cream and anit-fungal cream). Well, those seemed to help, but never heal the site completely. I feel like it helps mask the issues but not heal it. In the past month, I have started to develope some pains in the nipple, sharp stabbing pains that come and go and random other random pains/aches in the same breast. I went to my PCP a few weeks ago because she is much easier to talk to and actually listens to be better than my OBGYN. She decided she wanted to do some tests. On Tuesday, I went for a diagnositc mammaogram / ultrasound. When I got there the tech told me that I would not get the ultrasound unless the radiologist seen something on the mammogram that she wanted to check out further. My doctor just submits both tests so that in the event that both are needed I do not have to wait for approval and avoid coming back at a later time. Well, the radiologist wanted to do the ultrasound. She performed the ultrasound herself. She went straight to my nipple and then my lymph nodes. She said all looked good on both the US and mammogram, but was going to send me for a biopsy of the nipple which is scheduled for tomorrow, Friday 1/5. I asked her some more questions about the mammogram and she said my breast both looekd healthy and good. But, I am not sure why she then wanted to the ultrasound? Was it strickly because of my symptoms of the nipple, even though nothing was seen on the mammogram? I asked her if the Paget's test come back negative, what do I do? She told me I would then go see a dermatologist and we would figure it out. Anyways, I am really nervous about tomorrow's appointment and that in about 10 days I may find out things I don't want to find out. I know that everyone has a "gut" feeling and I too have that feeling, but I also have a looming, doomed feeling. Like, I know that I am overreacting and I need to just be patient and wait until I get the results, but I can't help but feel like I am going to hear something I really don't want to hear and I'm really scared. I just came here to chat with others who have exprienced some of the same things as I am currently going through.
Well, I will keep everyone posted, but Happy New Years to each of you! I hope that this year brings happiness, peace, and comfort to each of you!
0 -
Hello LIndsay, let me say, you are not overreacting. It's a scary thing you are going thru and hopefully it will come out negative. Perhaps she was just being thorough,, doing the ultrasound despite the mammogram being OK,,, rather than having you come back again. Try not to worry too much about that, since she said that everything looked OK.
Hang in there. We are here for you.
glennie
0 -
Well my consultation was pretty uneventful. The surgeon felt a kidney bean sized lump at the 6 oclock position, where the one biopsy was taken. I scheduled the mammogram and ultrasound for next Friday. Hopefully the results come back quickly. Fridays aren't so fun anymore... lol.
0 -
Hang in there, Josie!! Keep us posted..
0
