Paget's Disease of the Breast
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thanks Lou , I'm happier today, went to see the dr yesterday, the dr said they were a bit flat but he felt they were fine he took a photo and showed me and they actually looked good, I'm having my other breast reduced to match then a 3D tattoo after that.
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Oh that's good news Lorri, hope all goes well
Regards Lou.
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Hello
Hoping for feedback, recently I been terrible itchy breast ( left ) and I tried all kinds of anti cream for it. Also try different laundry just Incase after a month went to my pcp dr and she says doesn’t anything except a brown patch around my nippe . I did a mammogram which came back normal. She gave me a prescription for a steroid anti cream but it’s not working and told me to make a appointment with a dermatologist.. so they can scrape the area. Why? I don’t know? Any suggestions? Ideas? Help?
Thank you
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Hi Smmy Joe, Sorry than you have this problem, it's good you are beeen referred to a dermatologist hopefully they will do a biopsy as this seems to be the only way to diagnose Paget's. The problem is Paget's is rare so they tend to treat you for everything else first.
Best of luck Lou x
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Hello
I’m back again.. I went to my drs again because I couldn’t take the itchy and also the pain . My breast started now has pain in it, it comes and goes ( very sharp at times) .. my doctor decided to do a biopsy and today I got the result and came back negative for Paget . Which is good , but here’s my problem, she wants me to take cream for
Sebaceous hyperplasia of the breast , well I looked it up and I don’t have any rash or pimples and never had!! I told her why is giving me this when she knows I don’t have a rash or pimples? She couldn’t answer that except keep my appointment with my dermatologist. Also they were making me a appt with a breast specialist. Which I have one this Tuesday. In the meantime I still , I still have pain, itchy , and swollen breast., and no answer . ,,, has anybody had this happen ? I’m 52 yrs olds and my mom had breast cancer . I never smoke or drink .,,
Thank you
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Hi, good news not Paget's I hope they find out what the problem is, it's very frustrating not knowing.
Good luck
Lou x
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I was called in after a routine 2 year mammogram after sand like calcium deposits were noticed. I was sent to a breast surgeon who asked if I had any other symptoms. I mentioned dimpling of the nipple that would flake and never quite heal. I had asked 2 other GPS about this to be told it was dermatitis and nothing to worry about. Turned out it was Pagets of the nipple. I am 66 yrs old, and decided that I did not have problems with body image and that if anyone else had problems that it was theirs not mine. I had decided not to have a reconstruction because of those reasons.
Within 3 weeks from diagnosis, I had a mastectomy with sentinel node removal. Pathology reports showed they got all the cancer and no other treatment was necessary.. How lucky was I ? For anyone diagnosed with Paget's I hope you're prognosis is the same as mine. Good luck
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Just wanted to follow up since I know how frustrating it is when people don't. After a clean mammo and ultrasound, my MRI came back showing 7cm of DCIS. I was dx'ed with Pagets due to a dermatology biopsy. Long story short, had a mastectomy, and the pathology revealed 1.5 mm of IBC. So Pagets is out the window and I'm being treated for stage 1. Thank God no chemo. I'll find out about radiation on the 30th. The margins were tight for the IBC... 1mm. Good luck to everyone and prayers!
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Hi all,
I was recently diagnosed with invasive mammary cancer. It has both lobular and ductal features and is still very small. In evaluating my options, my physician ordered an MRI since I have very dense tissue. The MRI has come back and shown another area in the nipple. Based on my own research, I'm thinking this is probably Paget's disease. I've had a couple of minor symptoms that I just blew off at the time, thinking it was dry skin, but with this other area of cancer, it's probably not dry skin. I am scheduled for u/s tomorrow to evaluate it further.
Assuming this is Paget's disease, can anyone give me information about what to expect my options to be? I've really been leaning towards a lumpectomy, and still would rather avoid a mastectomy, but also want to make sure I can live with the results of the surgery.
Surgery wise - if they remove the areola and nipple along with another lump, how disfiguring will that be? Can it be immediately reconstructed, or would that come after radiation? I'm not a vain person, but I also know that I won't handle being disfigured very well. I know that's shallow, but its very troubling to me.
Please don't give me advice that I need to have mastectomy instead. I have enough people pushing their opinions on me, when they aren't in my shoes or in my life. I haven't ruled it out as an option, I just want to thoroughly understand my other options before making a decision.
I go back to the surgeon on Tuesday. I really want to be prepared with a decision, so we can get on with treatment and get past this chapter of life.
Thanks so much to all.
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Hi Robin, fingers crossed for you that it's not Paget's .
I had a lumpectomy first it didn't look too bad strange without a nipple and a bit square.and flat in the middle, I could have had reconstruction after radiotherapy.
Hope all goes well for you.
Regards Lou.
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Robin, just thought I should mention, Paget's doesn't usually show up on MRI it's a biopsy that usually reveals it.
Lou.
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Hi Robin, hopefully you won't have Paget's disease and like Lou Said it won't show on a MRI only a biopsy. If it is Pagets you as far as I know need to wait for reconstruction, I had 3 cm of DCIS and Pagets I had lumpectomy in October 2016, and 20 sessions of radiation in January 2017, my breast was square with a scar radiation definitely shrunk it more I had nipple reconstruction in February 2018, the surgeon rounded it out its still slightly square from a certain angle and nipple is a bit flatter than I'd hoped, however if I'm wearing a t shirt no bra there is definitely a nipple there to see, the surgeon said he could go again to round it out more but I said I was happy. I am getting the other one reduced in the next few weeks and when that ha s healed a tattoo on Pagets side.the surgeon said radiation worked for a long time afterwards and he recommended I wait at least 6 months after radiation to have reconstruction.im delighted I had that done, it's certainly far from perfect but they weren't perfect to start with 😀 my scar is fading very well and I certainly don't feel disfigured (well not any more) feel free to pm m
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Lorri70 - I was wondering about reconstruction as well so I'm glad you posted!
Robin - I was diagnosed with Paget's in March and actually they never found anything else on the mammogram, ultra sound and MRI. The only reason we know is the biopsy. If I had not repeatedly asked about the eczema on my nipple while being seen for a benign cyst I would have gone on for months without knowing. I have pretty bad eczema on my hands so really just thought it was the same. The lesion itself at the time was so tiny no one even noticed it was there. I just knew it itched like crazy. Even the surgeon missed it(although we were focused on the opposite breast) until I pointed it out and she got up close and personal! Every single test I have had says results are normal yet here I am missing a nipple!
I had a lumpectomy and SN Tuesday and I'm still waiting on pathology. The assumption is DCIS right under the nipple since we didn't see anything else. I was to stressed out about surgery in general to even consider reconstruction but now that I'm on the other side for now I may reconsider. As Lorri70 said it's a bit squared off now, literally looks like someone took a bite out of it. I was hoping it would round out a little more but doesn't sound like it will. The no nipple doesn't bother me at least for now as much as the squared off shape. In a shaped bra it looks completely normal and you would have no idea anything happened. Of course I am still waiting on radiation so I know it will shrink a bit more. This one was slightly larger to start with so it's actually pretty even now. I'm also on a weight loss quest so I know they will shrink even more as that happens. So maybe next year I'll look more into reconstruction if I can muster up the nerve for more surgery!
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Lou, Lorri, Kelli -- thanks for the info and the reassurance!!! Blessings to you all!
I had a u/s of the area yesterday and now they want to biopsy it. Since I already have another small cancer to be removed, I am hopeful that they can do the biopsy while doing the other surgery and if the pathology is positive proceed on the additional surgery as well.
Knowing what to expect appearance wise is so vital to my mental state. It's just my personality. If I know what to expect, I can deal with it (or at least deal with it better
.Back to the surgeon today! Thanks SO MUCH!
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Thanks to you all! Indeed, the spot in my nipple is thought to be a benign adenoma. The lesion will be removed when I have lumpectomy and tested, just in case.
And thanks for letting me know when to expect to look like after the lumpectomy. So appreciated guys!!!!
Best to all!!!
Robin
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Hello everyone - newbie here, so if I've posted in the wrong forum please advise.
Im scared to death researching about the one and only symptom I have. I've been having an itchy left nipple and occasionally right. It's been going on since Novemberish of last year but I had so much going on that I didn't put to much thought into until a week ago. (My sister passed away and we moved across country)
I have breast implants. I'm trying not to be in denial and trying to tell myself it's not Paget's but I keep going back and looking and researching and crying. I'm 31 years old and it started shortly after I fully weaned my son off the breast. My nipple doesn't looks scaley or dry. I don't have a discharge or a sore. When I look at my nipple it looks no different than before. My breasts look different after breastfeeding because of stretch marks but nothing out of the ordinary. They ache from time to time but nothing serisous. I have an appointment on June 13th. Ultimately I want to be realistic. Any insite on the matter would be much appreciated. I'm just so scared. I finally have a child that I never thought I would. I'm tired of crying myself to sleep and being so scared.
Thanks all!
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Hi, try not to worry, not been scaly and no discharge sounds good, your breasts do change after breast feading , hopefully all will be good, Paget's is not common fingers crossed all will be well.
Wishing you well Lou.
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Thanks, Lou! I was able to get in sooner, this Thursday!
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Mrsl30426 - Hoping its nothing for you to worry about! I do remember having similar issues maybe for a few months after breast feeding(years and years ago!) It's possible its just hormone changes for you as your body adjusts. I think it can take up to a year for things to go back to normal. Hopefully the doctor can quickly put an end to your fears and you can get back to normal life by this weekend!
I was diagnosed 3/31 with Paget's. It started as a tiny little spec on my nipple(directly on the nipple and did not include the area around it at all!) that I thought was eczema since I had severe eczema on my hands and a spot on my leg. Thinking back now I realize that the intense itching was quite a bit different than just really dry skin. It was intense and burning and progressed with time.
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Thank you Kelligirl for your response. I'm trying to stay positive.
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hi, my mother-in-law was just recently diagnosed with Pagets disease of the breast - she has been having issues for about 4 to 5 years and is now being diagnosed - she is 84 and does not want any surgery - we are being supportive - but personally is that wise - she drives and overall seems healthy for 84 - can still live alone and do everything for herself - not much info except to have surgery - how quickly can this spread if not treated
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Hi, I'm not sure how quickly this spreads but my Grandma died of Paget's she didn't have surgery, she never told anyone she had a problem until it was too late.
It isn't advisable my gran had a long painful death.
Perhaps you could go with her to discuss the options and what help she could have. I don't know if they would do radiation therapy without surgery.
Hope all goes well.
Regards Lou.
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Thank you, we do want to go with her. But she said no, he husband passed away 9 years ago. We have given her information that we have pulled up ( she has no computer or internet service ) she does not want anyone else to know - she wasn't going to tell us. So right now she wants to be treated as if nothing was wrong. I am waiting for her next couple of Dr's appointments to see what she has to say. I agree with you about a painful death. Do not wish that for her. But even at 84 she is in her right mind and can drive herself to the Dr's office, so we do not know when her appointments are. If we push the issue she gets very upset.
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I'm very sorry to hear this there really isn't much you can do perhaps try to advise her tell her the success stories of us that have had the op and are now well maybe would she read a bit of this thread if you showed it to her or maybe print it off for her
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I'm having my operation on the 12th July to reduce and lift my breast to match other one I don't know wether I'm delighted or afraid I'm certainly worried in case it doesn't look ok I've every faith in the dr but I'm still worried
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Hi Lorri, hope all goes well for you, best of luck
Lou.
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I had my reduction on Thursday it was really tough worse than the other operations. It took 2 hours then long recovery time felt sick and sore I had to have morphine I'm home now and taking lots of medication stomach feeling sick from medication but it's all done now please god it'll be all worth it
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Glad it's all done for you, road to recovery now.
I go in hospital Friday I'm having a knee replacement.
Take care Lou. X
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Thank you Lou best of luck with your knee replacement on Friday let us know how it goes
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Hi Rachel, sorry you have this worry at the moment. It wouldn't hurt any thing to have a second opinion and it could put your mind at rest.
If they are unsure the only way they seem to diognose Paget's seems to be a biopsy, good luck and let us know how you get on.
Kind regards Lou.
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