Paget's Disease of the Breast
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Glad it went well eyegal. I remember the first time I removed my bandages after lumpectomies, was the first time I cried. Not because it looked terrible but just that it made it seem real. I pray for good results for you! I went to my Dr app on Tuesday to go over my results that I thought were completely benign and was a little surprised at the report. Said rare bland immunoreactive cells are seen. Pathologist says if symptoms progress they recommend rebiopsy. Left feeling a little defeated. So I guess more waiting on my part to see how things go. I was thinking that Paget biopsy was cut and dry, not sure what to think now. Let us know how your results turn out.
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Hi eyegal just checking in to see if you got your results. I hope you did and they were B9!!
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I saw the surgeon on Tuesday, but unfortunately got no definitive answers. The pathology report diagnosed Sebaceous Hyperplasia of the nipple, but the doctor does not feel that would account for my symptoms. The path report also stated that in the sample there was "no breast tissue present". I didn't get the report until after I had left the doctor's office, or I would have asked him what that meant. It seems to me that there would have been some inclusion of breast tissue in the sample, rather than just the skin of the nipple...
The doctor felt he needed to confer with a colleague about my situation ( a breast specialist in Philadelphia) before he made any decisions about further testing/treatment. He said he was leaning toward getting an MRI since my mammo had reported that the significant density of my breast tissue may mask any tumors. I am supposed to hear something back by Friday, end of day. So, the wait goes on. Still itchy and still sore...
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Well eyegal sound like we are in similar situations. My pathology report stated if symptoms progress to re biopsy. My symptoms have got worse but my next app. is not scheduled until September. I decided I can not wait that long and just made a app. with a new oncologist for a second opinion. Its not that I do not trust mine, I just would feel better waiting after a second opinion. My mam. also read dense breast tissue that could be hiding tumor. Good luck!!
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Hi girls! Just wanted to say that I am thinking of all of you!!! Hoping for definitive good news for all! Have a good day and hope that the sun is shining where you are!
xo Danielle
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Thanks Danielle
I just got a call for a App. with a Oncologist in GI. I thought I could take a break for the summer, but I cant get it off my mind and just need some reassurance. So I will go in next Thursday and see how it goes. Hope everyone is enjoying some sunshine!!0 -
it is a shock when the "good breast" turns out to be a Naughty, Naughty Girl. I too had that happen. The DCIS recurrence and Paget's were in the left breast (the "Bad One") but what a shock to find out there was previously undiagnosed DCIS in the right breast! Glad I had them both removed!
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good for you, Smitty! Taking care of you and deciding you can't wait until September. I changed oncologists when the one said my flaking nipple was "Related to the radiation" even though the nipple was fine for FIVE YEARS after the radiation. Sending you positive thoughts!
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I was "lucky" that my left breast was mostly numb anyway from my 2005 edition of Survivor: Breast Cancer, so my punch biopsy recovery was not very painful. It was done in breast surgeons office with needles to numb the breast. The most painful part of the procedure was having to keep my arm up over my head during the whole thing. Everyone was wonderful and couldn't have been more caring, one doctor held my hand and said I could squeeze her hand if the biopsy hurt too bad. But it didn't hurt too bad and what was I going to do, crush a trainee surgeons hand? A career ending injury caused by me because of that bastard called Breast Cancer? I don't think so!
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Eyegal, Friday has come and gone. Did you hear anything? Hoping for good news.
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Smitty,,, can't blame you for not wanting to wait. Keep us posted.
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Thanks everyone! It took me a while to get the nerve for a second opinion. From the day I walked into my Drs office I did not feel comfortable, but I had elected to drive 2.5 hours to go to the cancer center and felt like going some were else would seem like I was being extremely picky. What sealed it for me was that after my last mam. and ultrasound the radiologist came in and said you have Pagets and treatment will be a mastectomy. Well my Dr was not happy she had told me this and strongly disagreed. He said he has seen Pagets many times and it is a ulcerated inflamed sore. Mine is very dry and thick mounds. There is no longer any distinction between the nipple and areola. I pushed for the biopsy. My Dr called me and said results are that it is dermatitis. GREAT! A week later I go to app. and get my path report and abnormalities seen, toker cells and rare immunoreactive cells seen. Pathologist suggest rebiopsy. Dr says he does not think its needed and set up app. for 6 month scans. Left feeling extremely fustrated! Gave it a week of trying to get my mind off of it, but every time you change your clothes you are confronted with something that is changing daily and does not look right. So broke down and made a app. with a new Oncologist. His nurse was so sweet. She said honey this is your health and your body, you should always get a second opinion if you are not comfortable and you do not have to explain it to anyone. Got off the phone and cried. In all of the months I have been going to app. I have not felt any kind of compassion or understanding until that phone call. Maybe the new Dr will agree with my other one, and I am fine with that. But at least I will have piece of mind with my decision. Have a great weekend everyone and thanks for the kind words as always!
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I'm so glad you made that call. That nurse was so kind to say that to you. And she is right!!
Take good care of yourself and keep us posted.
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I went to see the new Oncologist last week and I am so happy I did.
What a difference. He was so kind along with his staff. First thing he did was take me off my HRT and put me on Tamoxifin. He talked with me for over 2 hours about my pathology reports and future treatment and tests. I felt like such a weight had been lifted. He wants me to go back to my dermatologist and see what she suggests as far as the Pagets testing goes. So my app. with derm is in a week. I am just not feeling like I am in a rush anymore. Not having a Dr I trusted for so long was causing me to draw my own conclusions on things and driving me nuts in the process. This is my new lesson in life, be your own advocate. Wish I would of done this the day I walked in and felt uncomfortable, it would of saved me a lot of stress!!! Have a great week ladies 0 -
I am glad that you find such comfort and trust in your new doctor! (:
(: Danielle
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That's great Smitty!!
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Hi Kylie. What do you mean that your nipple and milk supply was not normal?
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Hi All,
I've just read this entire thread. I see so many similarities in initial symptoms to what I'm experiencing right now....I'm tempted to call my doctor and just request a biopsy. She currently is scheduling me for a mammogram, ultrasound and MRI....wondering if those are even necessary when I'm showing only dry flaky skin on my right areola....will all of these tests even show anything...and if not, why should I trust that I don't still have paget's? She managed to squeeze some fluid out of the dry/flaky area at my appointment yesterday, which concerned her, until she moved on to my left areola (no issues with this one) and managed to squeeze some fluid from it as well. She put both fluid samples on a slide and has sent it off for testing.
SO, my question for you all is: have you ever heard if it's possible to test the fluid that comes out of the lesion/dry flaky skin area...and actually get positive results (positive for cancer I mean)? Also, did any of you, when you first noticed the issue with the areola or nipple feel an odd sensation in the shower? It feels like the hot water is actually entering INSIDE by breast...also, the itchiness I feel seems to be on the inside of my breast and not on the outside (scratching the outside doesn't help).
Any and all responses would be so appreciated, thank you! Also, just wanted to tell you all that you're very inspiring to me.
Jenn
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the tests may or may not show you have Paget's. I had all those tests and they were all negative. Only the biopsy was positive. If all the other tests are negative, you will probably still want a biopsy. And yes, I believe that you can see cancer cells (if present) in the fluid. I actually had some nipple discharge before I saw the doctor, but he couldn't squeeze any out when I was there. If he had, he would have sent it off.I did have itchiness on the inside. I don't recall that water sensation that you described, but it did feel like an itch that couldn't be scratched.
Keep us posted.
glennie
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Hello all. Sorry for the delay in reporting back. I have finally had my breast MRI (it took a very long time to get an appointment). The surgeon called me last night to say that it shows suspicious masses in both breasts. They aren't large (5mm and 6mm), but he feels that additional biopsies will be necessary. He feels that I should be seen at the Breast Center of the UNC Hospital, about an hour away. So, once again, I am waiting for an appointment and more tests.
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Thanks for the update. Sorry to hear about the results and the need for more tests.Keep us posted. Waiting sucks!!
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Hey everyone,
I've read all the posts and I just wanted to know your opinion on my case.. I'm 25 years old. I've had a flaky, itchy, sore nipple for 9 months.. I first went to a dermatologist which indicated a cream for 2 weeks. That same week I went to my gynecologist, the whole nipple and areola were affected, he indicated some anti fungal medicine, some cream, blood work and a sonogram. The blood work came back fine, the sonogram showed some cysts and an inflamed milk duct. He said everything was fine and indicated some more anti fungal, antibacterial soap and creams.. The nipple and areola got better.. I was going in every 2 weeks and he indicated more blood work, to change my bras to 100% cotton, etc.. The nipple is certainly better as to when I went the first time, and there was a moment when I thought it was finally over.. However, about 1 or 2 months ago its comed back.. My nipple is itchy, flaky, it bleeds bc when i take off the bra the crust that forms from the discharge get pulled away.. It burns inside and sometimes it hurts.. Its only affecting the nipple now, tonight I can see it its a little swollen even, and I can see a noticeable change in the areola color, it has becomed darker. My mom is urging me to see an oncologyst because there's a history of breast cancer in her side (2 aunts have been diagnosed), maybe take a biopsy.. But I've read and I've been told that Paget's usually affect menopausal women, I'm not sure if I should be too concerned.. But at the same time this doesn't feel right and that scared me....
Thank you
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Hello doli, and welcome to Breastcancer.org. We're sorry that you're dealing with this worry, and although no one here can diagnose what may be happening with your breast, you can learn more about Paget's Disease: Symptoms and Diagnosis at the main Breastcancer.org site, including recommendations about seeing a breast specialist for appropriate testing.
Best wishes,
• The Mods
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doli, if it doesn't feel right, go see an doctor and get a biopsy. Put your mind at rest.
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Hi friends, I'm new here, and basically have an instinct about my right breast right now, and just wanted to talk a little, if you don't mind. I'm 69, almost 70, and active, fit, happy and loving my son and his family so much, rejoicing in my two little grandsons. OK that's me. Here's about my breast. My right nipple has been sore now for about 10 days. I went to my gynecologist yesterday after reading about Paget's disease on the internet, and expressed my concern. She is a lovely person. She told me a) she had never diagnosed Paget's. b) She looked it up on the spot for photos to share with me, and we looked at them together, and they were very visible on and around the nipple. Quite dramatic. Very different from my nipple, which appears normal, but is sore intermittently throughout the day. c)she looked at my nipples and did a manual exam of both breasts. She observed no difference between my breasts and detected nothing on the manual exam. My last mammo. was in September of 2013, and was fine -- I've had them yearly, always fine. My mother had breast cancer, a mastectomy, and survived. My older sister had an in situ tiny cancer on her breast, had it removed, and is fine. But I feel what I can describe as unusual sensations in my right breast, not exactly pain at all, but like an ache at times. Nothing in the other breast.
I know early detection is key. I realized later that the photos she showed me were of more advanced Paget's, which, if I have it, I would like to avoid getting to--would want it addressed as early as humanly possible. She ended the appointment with me saying she felt sure it was not Paget's. Told me to come back in a month if not improved.
I have no itching or scaling or discharge or bleeding. It's just rather sore.
I live in a city with excellent medical resources. But don't want to go to her hospital affiliation for a surgeon, if I want to get a biopsy, if this continues. I jump to biopsy, because it seems this is the only way to get a definitive diagnosis. I would want to go to the best hospital and surgery staff in the city, instead of hers, which, though fine, is not probably the best. I am in a quandary as to what to do. My instincts tell me something is wrong in the right breast. I know this may sound hypochondriac-like, but that's not my style.
I have so appreciated reading so many posts here, and have felt so proud of the women here I'm reading about. May I ask if you have any thoughts for my situation?
Thank you for any responses. Take good care of yourselves, dear ladies.
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Not sure what to tell you. It seems like everyone I know (including myself) had a rash, or skin irritation of some type either on the nipple or the areola. Mine looked like flaky dry skin in a circle on the areola. I also had 2 doctors tell me they were SURE it was not Paget's. Mammo's, ultrasounds or MRI may not show anything, but since your last mammo was almost a year ago, can you get it early this year since you have symptoms? It would be somewhere to start.I always believe in trusting your gut, especially since you have a family history, but it's not always easy to get the doctors to cooperate. Best of luck and keep us posted.
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Thank you so much for replying. In the time since I posted originally, I tried to figure out the best next steps, since I'm due to go away for two months in two weeks, to an area not full of excellent medical facilities. So I finally called the Dr. I saw yesterday, spoke to the nurse, explained my instinct feeling and the increased soreness etc., and asked her to ask the Dr. to give me a referral for a punch biopsy. She agreed, and I have an appointment next Tuesday for this to be done in the office, not under iv anaesthesia. It'll involve a needle (inject the Lodacaine to numb it) into the nipple. Yow. I hope I don't faint or something. So I think the results of this biopsy will point to the next steps, if any. Thank you for listening, and for writing. I really hope you are doing very well.
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you won't faint. You'll be laying down on the table. I'm glad you were able to follow up so quickly. Will hope for the best and please post again to let us know.
Glennie
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Hi Glennie,
Thank you. I had a surgical biopsy last friday, I am now waiting for the results.. Let's see what happens..
Good luck violaeliza..
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hope you hear good news soon!
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