Paget's Disease of the Breast
Comments
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Hi there! I am hoping for negative results for you!! You are so RIGHT to go with your gut and be an advocate for yourself. The punch test will tell for sure. If it is nothing to worry about then you will have peace of mind that there really is nothing to worry about! If it is something, then you have taken the right steps to start getting it taken care of. My doctors were SURE that I did not have Pagets--age, presentation, etc. I begged them to do the punch test during my lumpectomy. Unfortunately, my gut instinct was right. There is a very clear chance that you have nothing to worry about and as I said a moment ago-you will know for sure. Hugs and well wishes!
xo Danielle
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Hi everyone, I have been staying away from the boards for a bit to work on my anxiety associated with my "girls"
I have had two punch biopsies and a wedge biopsy. Radiologist felt like it was Pagets, first oncologist thought it was not, second oncologist was not sure and sent me back to the dermatologist who wanted to do a 3rd biopsy. Dermatologist called and told me it came back as some kind of dermatitis as well. She said she can not tell me for sure that it is not Pagets because the entire nipple as well as underlying tissue would have to be removed and biopsied. She also said what ever it is, is really to thick and advanced for a steroid cream to work on. Soooooooo?? Back for follow up at oncologist and he said, I would not worry about it because if it is we are already treating you for LCIS and you are on Tamoxifin so if it is Pagets we will catch anything before it gets to your lymph nodes. I think I understand his logic and am ok with it. I just wanted your opinions. Thanks ladies!!0 -
Wow, Smitty, that's a lot to deal with. Sending you a virtual hug.glennie
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Hugs from me, too, Smitty!!!!!!!!!!!!!!!!!!!!!! Thinking of you, friend!! (:
**Hope the bad weather here in our state is avoiding you! What devastation lately!! Blair, Pilger, Norfolk....):
xo Danielle
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Just a quick update. I went to the University hospital to see a specialist. She recommended an ultrasound based upon what she saw on the MRI, so I had that done. The radiologist did the ultrasound herself and immediately told me that they needed to do an ultrasound guided biopsy on both suspicios areas. I am scheduled to have that done at the end of this week. They noted on my paperwork that this was a BIRADS 4 on the ultrasound scale, which I believe most suspicious masses are rated as. Interestingly, they did not see any significant issues with the left breast, which was the one that is giving me all the trouble! So, I suppose I should move this discussion to another board since no one seems to be considering Pagets anymore. Thanks to everyone for their words of encouragement.
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oh my goodness! You go in thinking about one diagnosis, and now they think it's something else. YIKES! Hang in there.
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Hey guys,
My biopsy results came back negative for paget's, thank God. It suggest a dermatitis so they are starting me on a new treatment with a dermatologist. My oncologist wants to see me in a month again to see how its going.. Thank you for the good wishes and I hope that it all turns out good for you guys as well.
I send you hugs.
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yay!!! that's great, doli!0 -
GREAT news, Doli!!!!!!!!!!!! (:
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Hi,
I'm new here and a bit concerned about my daughter to say the least
I'm a Mom of a 22 yr old. In April, she showed me her right breast. She had discoloration on and around her areola/nipple. It was a darker brown than her normal skin colour and was about 1/2 inch thick from about 11 o'clock to 5 o'clock. Very irregular and not raised. She said it was a bit itchy, but not much. It did have some flaking, but again, not much.
She made a doctor's appointment at a clinic (we have no family doctor), and he told her it was excema and prescribed her some hydrocortisone. He did ask her if breast cancer was in the family. It isn't. He also said to return if the cream didn't help.
2 weeks later, it did look somewhat improved. I told her to make another appointment as I wasn't comfortable after someone mentioned Pagets disease and I researched it. Well.. she didn't want to return as she felt the doctor didn't taker her seriously, since she's only 22.
Fast forward to now, July 7th. Yesterday, she showed me her breast again, and the discoloration has spread considerably... I told her to call today to make an appointment!
She let me take a pic when she first noticed it, again after using cortisone cream, and again, yesterday. I've put them together to compare, and there is obvious spreading.
My questions are these: I'm going to attend her doc appointment with her, so I can speak up... she's a little shy.
1. How can I voice my concern enough to get the doc to refer her to someone else? I don't want to seem like an over-bearing mother who found information on the internet.
2. What type of doc should she see? I live in Northern Ontario... not a lot of specialists.
3. Any advice from anyone? please? Any other questions I can ask the doc?
Thanks in advance.
Lisa
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I would suggest someone who could do a biopsy of the area. Either a breast surgeon (could be a general surgeon) or a dermatogist could do a punch biopsy.Your concern: "Doctor, the rash is spreading and the cream isn't helping. I realize that she is only 22, but breast cancer is happening in younger and younger women all the time now. I have a friend (~me, glennie ) with Paget's and it only showed up as a rash on her areola. Please put this mother's mind at ease and refer us to someone who can do a biopsy." (I say biopsy, cuz I have Pagets, and it was not seen on mammogram, MRI or ultrasound, only on biopsy)
Now if MD wants your daughter to go thru those other hoops first, OK, but if all is negative, get a biopsy. It's the only way to tell for sure.
And my rash came and went also. Not to scare you, but it sounds similiar to mine. It got better, went away and came back. Repeat. Finally after almost a year, when the area broke open and bled, I went to the doctor.
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Glennie gave you some wonderfully solid advice. I ditto what she said (you can say two friends--Glennie and Danielle had Paget's). Mine also did not show on any tests. I begged for a punch biopsy when I had a lumpectomy for DCIS. Have to speak up and of course the hope here is that nothing serious is going on---if not---CELEBRATE. If a punch test shows something then something can get going to take care of it. All doctors were convinced I did NOT have Paget's--I just needed to know and glad that they listened. It's okay to not agree with everything they say and is absolutely okay to kindly ask for warranted reassurance. I think Glennie used some very kind but also in a very much "listen to me, this is my daughter" way!
A dermatologist can absolutely do this test and as Glennie said, there is no way to say Paget's or not without a punch test.
Warm wishes and hoping for the absolute best and that a punch test can put all at ease.
(: Danielle
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Thanks Glennie & Hoping...
**I was asked to move my post to the "worried but not diagnosed" forum, but I wanted to let you know that
I really appreciate you taking the time to answer my questions and give me some advice.
I'm trying to be optimistic, but I can't help but feel from time to time a sense of dread about all this
Amy hasn't yet gotten through to the doc's office on the phone to even make an appointment. She'll try again tomorrow morning.
I will definitely ask the doc the questions you've both mentioned. Wish us luck!
Lisa
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well, I'm glad you asked over here. I keep an eye on this one, but honestly this forum is so big, I never wander over to that part. I hope you will keep us posted.glennie
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I have a question for anyone that one may have had surgery or radiation and was diagnosed later with Paget's. I am a little concerned with appearance of my left nipple but it is difficult to determine if still just effects from surgery and radiation for DCIS which was located beneath this nipple. I am 7 weeks out from 33 radiation treatments, the last 5 being boost which were directly at nipple. My nipple has appeared slightly inverted since second surgery but the actual nipple (versus areola) appears almost yellow in color and quite dry. Some women seem to note redness in areola but I really couldn't say as surgical scar across this area and still evolving. I feel like it just looks a little different over the last couple weeks. This area has been very sensitive at times but surgeon said to expect this due to nerve regeneration and extent of tissue removed below the nipple. I should add my second surgery involved some skin removal as well due to superficial nature of DCIS in one area-DCIS multifocal. So really not out of the realm to think nipple may be involved. Saw the RO few weeks ago and scheduling following up MRI with next period to check on questionable area right breast. I did point dryness and discussed sensitivity continued inverted appearance left nipple. He advised restarting radiagel and continuing to watch. If I could compare to anything else the nipple looks and feels a little like first few weeks of nursing kids. Hoping just continued healing and not panicking.
Going to see OB/GYN in few weeks and like I said need follow up MRI in few weeks so I will have opportunity to have area rechecked but just wondering if anyone had Paget's diagnosis after other treatment.0 -
Mine was a primary DX. Maybe someone else?
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Bump0 -
Bumping for some new people.0 -
Hi, everyone. Anxiety levels in my house are quite high today. I had a freckle appear on my left nipple about 6 months ago, or so. I didn't think much of it because I just turned 39 and thought it was just an old age spot.
For about the last 6+ weeks, I have had an eczema-like rash on my areola of the left breast. It isn't responding to hydrocortisone or an OTC anti-fungal cream. Over the last week or two the nipple and areola are a darker red than the right and I have what appears to be a blister on top of the nipple. The doctor performing the ultrasound said she didn't think it was a blister, rather an inflamed duct. I have an itch that, honestly, isn't unbearable, but it feels internal like an itch I can't scratch. My gynecologist recommended a biopsy. Yesterday, I went for the mammogram and the ultrasound. Many, many pictures were taken and no masses were visible. Thank God! I was starting to feel certain that a trip to the dermatologist was the way to go, but just to be safe I have my biopsy scheduled for March 5. Well, out of nowhere this morning, I had clear spontaneous nipple discharge. ??? I am absolutely in panic mode again. *sigh* If anyone can offer some insight as to what may be going on, I would greatly appreciate it. Thanks in advance! 0 -
It is hard to say without a biopsy. However, let your doctor know about the discharge. My BS told me that the discharge could be analyzed,, so if you have more,, or if BS can squeeze some out,, that might be a good thing.I had some minor yellowish discharge but was never able to get it to the doctor for analysis.It's very good that your images were clean. However Paget's is a tricky devil and it is possible to have it w/o anything showing up on Mammo/US/MRI. **raises hand** I have been here, and I know waiting is very hard. It could still be nothing!! But it is very good you are getting it checked out.
Hang in there. And please keep us posted. Hoping for the best for you.
glennie
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Thank you so much, glennie19, for your quick response. After the discharge this morning, I decided to call around to see if could get in sooner with a dermatologist and am now scheduled for a punch biopsy on February 23. I will continue to pray for the best, while I prepare for the worst. I will keep everyone posted.0 -
Great,, glad you were able to get an earlier appt. The waiting and wondering is hard. Hang in there!!0 -
Hi 3Tara9, welcome to BCO.
It is very stressful going through the testing process but hopefully the discharge may just be from the inflamed duct but only the biopsy can settle the questions you have. Glad you are having it checked out and no masses visible, and that your next appointment not too far away. Hope the biopsy results are a B9 problem they can sort out for you.
All tghe best
The Mods
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3Tara9, Good luck! It seems like most of the time symptoms are benign... hoping that for you.
gennie19, was your Paget's and DCIS in the same breast? I had a DCIS recurrence, and had a BMX last January. Because the left nipple had been radiated 4 years prior and couldn't be saved during the mastectomy, I decided to have the right one removed, just so they'd look the same. Pretty shocked when pathology came back and I had Paget's on the "healthy" side. I had no symptoms before the surgery.
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jmb5: yes, it was on the same side. I had nipple symptoms,,, punch biopsy showed Paget's. I decided on MX,, instead of LX with rads, cuz I didn't want rads. DCIS discovered on pathology from the MX. Pretty freaky getting your "healthy" breast removed and discovering Paget's.
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glennie, yes it was definitely a shock. They said it was very early stage to not have symptoms. I never really asked a lot of questions about it, but have since thought of a few to ask BS some day. (I only see her once a year now.) I read that DCIS often shows up with Paget's, but there was no DCIS in that breast.
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From what I've read it is rare to have Paget's alone,, it is usually found with DCIS or something else "behind" it. Good thing it was found early before you even had any symptoms!!
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Hi everyone,
I'm new here - and haven't been diagnosed, but for the past 3 or so weeks, I've been having itching and tingling sensations in my right breast only. It's not an itch I want to scratch like a mosquito bite; it's kind of deep and if I do scratch the itch it's way more uncomfortable than just leaving it alone and trying to ignore it. The nipple has been reddish, extremely sensitive, and sore off-and-on, and the skin seems to be thickening a bit at / around the center. I also have spot of discoloration on my areola - it's losing color, not getting darker. And I feel like my right breast is heavier or thicker at times... I don't know how to describe it better. It's just more noticeable than my left.
I had mammogram (and nearly passed out from the pain when they did the right side!), and an ultrasound of both breasts as baseline since I'm under 40. Both came back all clear. Great news, right!? The doctor recommends cortizone cream, but that seems a little ridiculous to me. I know that biopsy is really the only way to get a true diagnosis. I just feel like since I don't have discharge, bleeding, crusting, flattening, inverting, etc. that maybe I'm being overly concerned. I'm wondering if anyone experienced similar initial symptoms? Or what your thoughts are based on this?
Thanks for your time and feedback.
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Had my punch biopsy of the left breast yesterday...strangely enough, the dermatologist found a spot she "didn't like" on my back and did a punch biopsy of that as well. I head back in to have stitches removed and to discuss the results on Monday, March 2. Waiting is the worst! Soon, grasshopper, soon, I must remind myself!
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Hang in there, Tara,, and keep us posted.
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