Paget's Disease of the Breast
Comments
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so.. I was talking to the surgeon at work who has done a lot over the last 20 years with breast cases.(I'm a nurse but I had gone to another hospital that had 3d mammograms.) I asked him about Pagets and told him that the mammogram and ultrasound were clear. He said its always clear with Pagets, the only way to tell is with a biopsy. Then I started talking about how even dICScan hide in dense breasts, etc. he looked at me and said that I sure know a lot about Pagets and BC. I then told him I was referring to myself and I've had a small rash and I am now using some cream. The cream has helped the itching, but the small rash is still there, but it's only been a week. He said if the cream doesn't clear it up I need a biopsy, which is what the surgeon said I went to but she said to wait until summer.I'm so thankful to have found this thread!
My other question.. Did anyone experience intermittent sharp shooting pains in their breast with Pagets?
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hmmm, I don't remember sharp shooting pains, but I suppose anything is possible. I did have the rash and itching. It's good to hear a surgeon say that you must have a biopsy! Not like some,,,,,who think they can look at it and tell.
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I keep saying it must be my fibromyalgia as I get weird pains all over, but this breast pain is just on the left; same side as the nipple issue. I'm not sure I can wait until summer... I'm not a patient person. But I sues it's about 2.5 months if I make an appt for the first day of summer! I should make one that I can always cancel if needed. Something in my gut tells me I'll be having a biopsy. I always have weird things with my health.
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I had a patient the other day tell me the only clue she had BC was that she had pain. Tender pain on the side of her breast. And Dr's were telling her BC doesn't hurt. Well, from reading on these posts, it can and my patient was persistent, thank goodness she was!! It took 3 mammograms to find her cancer.
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Hi Stasiam, I had sharp pain with my Paget, I think the biggest clue to Paget is, it always starts in the nipple , not surounding area nothing else does according to the Paget leaflets that I have been reading.Try to get biopsy sooner than later for peace of mind.
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Stasiam, I have fibro too, and I bet you can tell if this breast pain is different than your usual fibro pain.Lou said that she had pain too. So why not go ahead and make an appt for a biopsy? It will give you peace of mind if it is negative,,, and if positive,, well,, you can start the treatment road that much sooner. I dont know why your surgeon wanted you to wait until summer. If cream doesn't clear it up in two weeks,,, I think it's time to go back. And I have to tell you with mine,,, the rash came and went. Cream or no cream,,, it came and went. It was not until it broke open and bled that I freaked (on a holiday weekend of course) and made an appt to see the doctor. And that was months of dealing with the on again off again rash.
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question...the rash that all of you talk about, is it limited only to the nipple and areola? Or did it extend out beyond the areola? I didn't find many pics online of Paget's, so I d know what is typical for Paget's. My rash, for lack of a better term for it, goes beyond my areola by about a little more than an inch across and almost an inch and a half long. And my nipple and areola are much darker than the unaffected breast.
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Mine has only been on the nipple, it was shiney red patches, and did bleed and crust over, it did seem to come and go .
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Mine was on the areola, shiny red at times and it did crust over.0 -
I read that it doesn't always crust and bleed. Lisa, when do you go in for a biopsy? I found a lot of pictures on the internet by changing my wording in google and then clicking on images. There are pictures that range from the smallest of nipple rashes to total erosion of the nipple and areola.
I am worried about if it is pagets and the recovery time and once I get back to work. I've been having a hard time with my fibro and I'm wiped out an hurting most days. My work can be relentless and we only get a half hour break every day. If I'm working 10 hours or longer that gets to be to much. I've heard people can work through treatments, I just don't see how that could be possible. I should not get ahead of myself though!
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Don't get ahead of yourself is right! There will be time to plan if it becomes necessary. I've talked to many women on here who suspected Paget's and the biopsy was negative. So may you all be in that category!0 -
Thanks ladies. I looked for more pics online and finally found some different ones. I found some that greatly resemble mine. I had been confused, not understanding why MO thought Paget's since it's not just my nipple and areola. It sounds crazy, but it's a relief to see pics of Paget's involving more of the breast. Until then, I had worried about inflammatory breast cancer, which is very aggressive. Praying it's negative for Paget's or any form of cancer. Hopefully bs will do biopsy during appt on the 13th. Emailed his nurse to request it be done then, we'll see.
God bless you all
Lisa
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Lisa, I hope you can get it done on the 13th. Hang in there.0 -
well I used the hydrocortisone cream for 2 weeks. Nothing new in the nipple, looks exactly the same but the itching has stopped, but I expected that to happen. So now I wait to see if the itching comes back to see if I need a biopsy.
Lisa, keep us informed on what happens at your appt next Monday. Thinking of you for a good outcome!
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Hope all goes well Lisa on 13th, i have a appointment on 13th also and feeling very nervous, i will find out if i need more surgery Radiotherapy or Chemo, i'm hoping i won't need any !! Stasiam it might be best to have a biopsy any way, peace of mind. Good luck.
Lou.
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In the bag for you both on the 13th. Keep us posted.0 -
Nurse for bs emailed back, he will do biopsy on 13th if he thinks it's necessary. I will insist on it if he doesn't want to do it. It is such a no brainer to me... I mean it's such a simple thing to do in order to know for 100% whether or not it's Paget's. I don't understand why it is so difficult for some to get it done. It truly makes no sense to me. Regardless of whether or not a doctor thinks it's Paget's or an infection, why should anyone have to jump through hoops in order to get definitive answers? Stasia, push for the biopsy, like Lou said, peace of mind. Lou, good luck with your appt Monday, prayers for you.
Lisa
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I have itchy and scaly areola. Also a lump under each area where the scaliness is. 2 lumps total. I'm a bit worried but haven't seen a doctor yet. I have saline breast implants with a silicone sac. One broke about 10 years ago while I was pregnant. The doctor told me to just leave it until I was done nursing so it stayed for about 18 months. At first I could feel the sac and it was sort of hard. As time went on it became mushy and eventually I couldn't feel it anymore. I've never felt very well after this happening. I've been diagnosed with fibromyalgia. I'm guessing more like silicone poisoning. The doctor wouldn't let my husband in the room when he replaced the implant. After I woke up from the anesthesia a nurse whispered to me that she had something to tell me about the procedure before I left but I never saw her again before I left. I'm just wondering if anybody knows if the lumps and scaly area sound like pagets and if the implants could have anything to do with it. I really don't know what to do. I have been putting this out of my mind for several months now. I really don't like going to the doctor just to get the run around. I'm new to this site today so please bare with me. Thank you.
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pia, I'm not help in the Pagets area as I'm new also and wondering if I have Pagets. I do know about Fibromyalgia as I have had that for 17 years and it can be hard at times. That I can help you with!
I would go to a surgeon who is familiar with BC and. Pagets. I would not go back to the one who replaced your implant! Good luck!
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this morning I emailed my Dr and asked her if I have to wait for the biopsy as I'm kinda freaking out and feel like I can't wait a few months for an answer. She said I don't and we can go ahead and schedule. (Have not heard back yet about scheduling it, I'm thinking it will be in May as April 29 my dog is having "lar par" surgery and then with my work schedule). Anyway, she said she will do a wedge biopsy in the operating room as it's the best cosmetic outcome also. No mind my stomach is full of stretch marks and incisions, I'm not concerned with appearance. So I'm sure it will be under sedation but not a general with intubation. I'm thinking a wedge is good as it should get a good sample. But it also means I will need a driver home
but I'm super relieved! 0 -
I am new here today. I posted earlier but tried to edit it and it disappeared. I think. So here it is again. I have two rough skin patches around my areola with a lump under each of them. I also have saline implants with a silicone sac. One broke about ten years ago while I was pregnant and the doc told me to just leave it until I was done nursing. When it first broke the sac was hard to the touch. Then it became mushy and finally I couldn't find it anymore. It seemed as if my body had absorbed it. When I got it replaced the doc wouldn't let my husband in the room but after I came out of the anesthesia the nurse told me that she needed to tell me something about the procedure. I didn't get a chance to see her again so God only knows what she was going to tell me. I'm wondering if by any far chance anything like this has happened to anybody else. Also wondering if the lumps under the rough skin sounds suspicious to anybody. I've just put this in the back of my head for along time. I somehow found this site on google so here I am. LOL Any thoughts? I just don't want to go to the doc and get the run around for nothing.
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Thank you Stasiam28. And no, I'll never go back to the doc who replaced my implant. There's something shady about him. I just found out that it takes a specialist to replace an implant. Not usually the doc who originally put them in. He insisted on doing it for me for free. That should've been a red flag right there. Anyway, good luck with your situation. And sorry to hear you have fibromyalgia.
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Hi Pirina, wow what a rough time with that implant. That doctor does sound shady to me too. I don't know anything about implants concerning Paget's, but I can see that you would be concerned about the itchy and scaly areas. I had a scaly patch on my areola that came and went and came and went. Finally when it broke open and bled,, I went to the doctor about it. I did not have any lumps though. My mammo and ultrasound and MRI were all clean. Only the biopsy showed it was Paget's.Will you find another surgeon for a biopsy?
And I have fibro too,,,, how weird is that?
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Hi, I also have fibromyalgie that is weird.
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Yes glennie, I'd give anything if I'd have never gotten the implants. They've been nothing but problems. I've never had a mammogram sinse the one I had to have before the implants. Research says that implants don't increase a woman's chance of breast cancer but I don't know if I believe that. It's trauma to the breast and the only person in my family who has ever had breast cancer was my great grandmother who was hit in the breast with a board. I guess I'd better make an appt. with a doc. I can feel the lumps so they should show up on a mammogram. I just don't know anything about this type of stuff. Nobody in my family gets mammograms. As for the fibromyalgia, I was first diagnosed in Mexico. Then by 3 different doctors in the USA. I've just sort of ignored that too. Its hard to ignore the symptoms but I just pass them off as me being exhausted. I've read that it's really hard to get a diagnosis of fibro so I guess I have to believe that I have it if 4 doctors are saying so. Getting older and dealing with health issues is yuck. LOL I'm really sorry to hear about your BC and fibromyalgia. I think if I were you I'd have them both removed too. Mine have served their purpose so they can go. It's just daunting to even think about all the appts and procedures. I'm one who never goes to the doctor. Ok, thank you again.
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I just saw what Lou wrote. Yes it is weird. Research on what percentage of people with fibro get breast cancer would be interesting. Or visa versa.
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Wow, 4 of us here with fibro,,,, interesting!0 -
yes 4 of us with fibro and all with breast cancer/issues. That is very interesting. My guess is it has something to do with our immune systems working against us. The worst part of fibro for me are the migraines that can last up to 3 weeks with no relief. That's pretty difficult when I have to work whether I'm able or not. Does anybody else get migraines that last this long?
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I have really bad head aches that last for days.I used to have migrains but fortunately not had one for ages.
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No, I don't get migraines with mine. I have more of an issue with muscle aching pain and poor quality sleep.0
