Paget's Disease of the Breast
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Well i have been to the hospital and i have to have surgery again on the 28th April. The consultant was a bit confussed so seeking advice from his colleagues, it apears that after operating it showed Pagets on the skin near the areola and that was unexpected, not a clear margin. I had guessed this as i have a small sore just come up near my surgery scar. He seemed to think it was usually confined to the nipple and areola.Not sure yet if he will do Mastectomy or another wide excision.
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UGH for having to go back for more. Paget's itself is usually confined to the nipple and areola,, but frequently there is something else going on in the breast, like DCIS,, which is what I had.
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I don't have migraines that lost that long. That must be miserable! Mine is body aches, tiredness, poor sleep and foggy ness.
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Lisa/mommy duck: any news from your appt on Monday?
I have scheduled the biopsy of my nipple, either June 1 or 2. Since it would be a Monday afternoon appt with a wedge biopsy, I'm a tad nervous about working a 10+ hour shift the next day as I'm thinking I maybe sore? But if I can't get someone to work for me or trade a shift then I'll have to. Another nurse in our department has the day off already on Tues so I can't get it off without finding my own replacement. I wish it was sooner, but now at least I have a date!!
Keeping you All in my prayers!
Stasia
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Stas: I had a punch biopsy, not a wedge,,, but I was not very sore afterwards. Hoping you will be able to switch with someone, just in case. Sorry you have to wait so long.
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That is a long time to wait, I had punch biopsy also, it did hurt at the time but not after, hope all goes well.
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Glennie they say nothing else going on in my breast so bit confused as to what is going on, no one seems to know.0
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well, I finally called my GP and told the receptionist that I wanted a referral for a mammogram. I told her about my scaly areola and the 2 lumps and the breast implants. She made me an appt. for the next day. That never happens. I usually have to wait weeks to see the doc. I guess they take this stuff seriously. Then my doc got sick and my appt. was changed to this Monday. Stasiam, I can't believe you have to wait until June for your biopsy. That seems like a long time. I did some reading on google about breast cancer and fibromyalgia and what I found out was that people with fibro are 4x more likely to get breast cancer. They didn't know the reason why. Sorry, but I forgot my source of info. Fibro fog. LOL. The migraine has finally pass after exactly 2 weeks. Yuck. That was difficult having to work with that going on.
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I only have to wait because of my work schedule and the days that the Dr does surgery. I can't get a day off unless I find a replacement for my shift and no one is committing to working for me. And you can't have a day off if a co worker does. So it's limited. Uurgh. But of course now it's not itching anymore and doesn't look as red. I have a tiny spot that looked more red than the other and it's outside the normal "ring " on the nipple. But the itching was always intermittent. My MRI and ultrasounds are clear, but that common I have learned. What I have noticed in about the past 8 months is I'm a lot more tired that I used to be. I need more sleep and/or wear out faster. Interesting to hear the info about fibro and breast cancer. I'll have to google it. But... I got to go to bed. I'm tired and I even had a nap early today.
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it must be stressful waiting. It's to bad that somebody can't cover for you. I understand how you feel being worn out and tired all the time. Sometimes I take a 3 hour nap in the afternoon. In fact often. I just don't have the energy I used to have. I attribute it to my age. But then I see 80 year old women with more energy than I've got and think gee, I wish I had all that energy. I'm 46 and have 80 year old ladies running circles around me. As for the fibro and breast cancer. I wasn't really expecting to find link between them but there's some pretty interesting info that says otherwise.
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I will have to look for that link too,,, sounds interesting.Stasiam: my symptoms came and went too. The rash would appear and disappear in a few days, whether I put cream on it or not. It broke open and bled Friday night going into Memorial Day weekend and by the time I could get into see my GYN, it was Weds and cleared up. She did notice that the skin seemed thicker there, though, so at least there was "some" symptoms left. I think that sucks that no one will switch shifts with you. Bad co-workers!
Pirina: I wish I had more energy too!!
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I just turned 47 and I keep thinking it's my age alsoand I need to exercise more. But work wears me out. I've always switched for co workers when they needed me, but this is getting to be a busy time for people with kids graduating and the end of school. Oh well. I figure at least I have the appt set up. That's a relief right there.
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Well, tomorrow is my doctors appt to get checked out and get a referral for a mammo and sonogram and my breast implant has moved again and a part of it is covering up one of my lumps. I've done everything to get it to move positions so she can feel the lump. Gee wiz. These implants are nothing but problems. I'm guessing I'd better wait until it does move so the lump will show up on the mammo and sonogram. IDK. What a weird delema.
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I think you should make the appt anyway. Even if it moves,,, what if it moves back again before the next appt? Can they see the lump with the mammo even with the implant in the way? I don't know anything about implants,,, so,,,, sorry if that is a dumb question. I'm just thinking: go to the doctor anyway and present the problem to him/her.0 -
Yes, m going to go. She can feel the one lump and take my word on the other one. I'm not sure if the bigger lump will show up with the implant in the way. Maybe the doctor will know. Or I was thinking that I could hold off on the mammo/ultrasound until it moves again. I'll just keep the referral until then. IDK. I think it's the weirdest thing that this implant moves around. Somebody told me I need to have another surgery to have it put where it's suppose to be. No way. If I have another surgery I'm having them both taken out. They are nothing but problems. I don't recommend them for anybody. I've done everything to make it move. I've been jiggling my boob and trying to twist it out of the way. It's sort of hilarious. LOL
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**picturing you playing with your boob** LOL!!! Keep us posted after the doctor appt.0 -
Hope all goes well for you Prima, yes it made me laugh too. Glennie did you say your pagets was in your masectomy scar? If so what did they do about it. I have now been told there was a dcis, and because there wasn't a clear margin and pagets still there now on the skin, thinking possibly best to have a masectomy, big decision!!!
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No, Lou, mine was on the areola. I think someone else said it was on their mastectomy scar, but don't remember who. DCIS is pretty common with Paget's.
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I am new to this site trying to find explanations to my symptoms. There is not a lot out there that goes with them and no I have not lost weight nor on hormone therapy or drink a lot of caffeine. I have had a intense itchy nipple on my right side since the end of November. When I first mentioned to a PA she stated I probably had dry skin and to use lotion and cortisone on it. (I have never had dry nipples) but I did....no luck. The itch wakes me up at night and I have to remove myself to itch in private at work. Fast forward to last week....I asked my primary about this and told her that my right breast has shrunk about 1 1/2 cup sizes since December, that the itch is just as intense and I have small little bumps on my areola. There is no discharge are color change of the areola and the nipple is just bright red with one little skin tag type form on the tip. Well she said that she had no idea and was referring me to a breast specialist. A week later no phone call or appointment. I have called and they say it takes time. I also have MS which in fact makes my immune system low. Just impatient and worried. Everything I look at points to Pagets.
Has anyone had any similar symptom's or experiences?
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Hi momnorth, Pagets is so rare that nobody thinks of it first... I went for a mammo and the tech did not understand what was going on with my left breast's oozing bright red nipple. The tech that read the films gave me a clean bill even though the nipple structure was different from the right breast. The scaling in my bra led me to use bandages because the itching and scratchiness was so uncomfortable. Exactly 1 year after that mammo I went to an obgyn because I had a break from work and wanted to check it before returning. He immediately sent me to a surgeon and said it was cancer. The surgeon said she didn't think it was Pagets because it's so rare, she thought it was probably psoriasis but did a punch biopsy anyway. Much to everyone's surprise, it is Pagets, and 4 more invasive biopsies revealed DCIS as well in both breasts.
If you need a referral to go to a surgeon, beg your obgyn for one, and make the appt yourself! Get a biopsy so you can know for sure. Best of luck!!!
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So I went to my appts last Monday....not a good experience, had to put it all out of my mind for awhile because I was so peeved! Long story shorter.... first, as these things go, my "rash" was having a good couple of days leading up to the appts. I Saw the bs first, he looked at it and then asked why I was there. I explained. He said it's not Paget's. I Said, great, but how do you know just by looking at it? I explained that the rash will sometimes fade for a couple days, but always returns. He said mammo, u/s, and MRI were clear therefore not Paget's. He was an arrogant jerk! I wouldn't let it go tho. He got frustrated with my insistence on having proof that it's not Paget's. He told me that it's a skin thing, go see a dermatologist. And he left. Oncologist came in minutes later. He explained that when he saw me last month, he only suspected Paget's. He repeated what bs said. He then asked why I was so "upset" (btw, I was calm, cool, and collected, just insistent on getting concrete answers!). He Said even if Paget's, not a big deal. (Yes, those exact words!) said I obviously didn't have any underlying cancer according to all the tests. I said, wow, you don't find it odd that this particular Breast has increased density since last year's mammo? I Then began spouting off all of the info I have gotten from ACS and BCO websites about Paget's and about dcis not being detected on these tests. He then said he wasn't telling me to ignore my symptoms, by all means go to dermatologist and get biopsy. He Then said again that it's not a big deal if Paget's. By then I had enough, and I let loose! Not a big deal, really?!?! I said, ok, say it's Paget's.... I then have to decide what type of surgery to have, based on biopsy results and factoring in my high risk of breast cancer. Oh, wait, crap, I'm a widow now! I Can't just pencil surgery in. I have to first find someone to take care of my 7 & 8 year old children. Hmmm, not gonna be easy, my son has special needs and both of them have emotional needs as a result of daddy's death. I then have to find someone to help me at home while I recuperate after surgery. You know, those pesky kids like to eat, gonna need groceries.....etc.....
He at least had the good sense to appear like he regretted his words! Nuts!
I've been trying to find dermatologist, didn't have any luck yet, not one that takes Medicaid. My PCP's office called today. They got the office visit report from onc, wanted to go over it with me. Onc wants repeat mammo and MRI 6 months after last ones. And recommended see dermatologist for biopsy. She said PCP can do biopsy in office if I would prefer. what? (Then why, oh why, did I have to go see onc and bs?? I Didn't really ask her that) I told her that would be most helpful, thank you. So I go on May 1.
What a crazy roller coaster!
Thank you ladies for asking how my appts went. I Hope you understand why it took so long to reply.
Lisa
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OMG, Lisa,, what a run-around!! Those jerks!! I'm so glad that your PCP will do the biopsy! In the bag for your appt! And please feel free to remind them that you have a friend (ME) with Paget's,, whose MRI, mammo and Ultrasound were all CLEAR,, and yet,, not only did I have Paget's but underlying DCIS. Damn these doctors who think they know everything! They do not have crystal balls.0 -
Wow Lisa. What a horrible experience that must've been. I'm really sorry. What about trying female doctors? I've already decided that if I can help it I'm only seeing female doctors for female issues. I had quite the opposite experience today at my appt. my breast implant was still in the way of my doc feeling the bigger lump but she did feel the tiny one and also found another one on the bottom of the same breast ( left) sort of tucked up under and against my chest. . Then she noticed that the problem breast had sort of dimpled skin and sort of saggy. She without hesitation gave me a referral for a diagnostic mammogram, ultrasound, and she wants an MRI and she wrote a note on the referral to do any necessary further testing. Whatever that means. My insurance company has to approve the MRI before I can get that done. I asked her if I should wait until my implant moves again so they can see the lump that its hiding. She said no, to go home and make the appt as soon as possible. When I got home the phone was ringing and it was the mammo dept calling to make my appt. now I'm quite a bit more worried than I was before the appt. Having them call me before I even got a chance to call them I guess is what's worrying me. I had the doc feel my scaly skin around my areola but she didn't seem to think anything of it. That seems to be most people's experience from what I've read from you all. So my mammo, etc.. is on Tuesday the 28th. This ought to be a fun week..
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by the way. I just want to say that I really appreciate having this site and all of you to share things with. My family doesn't even know I have an issue. My husband knows about the problem but we don't talk about it ever. He doesn't even know I went to the doctor today. Thank you everybody for being here.
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Lisa, that is a run around! So your biopsy is May 1?
pirana, I also appreciate this site. I am only freaked out I have Pagets, but the knowledge, advice and comfort I have received from this thread is wonderful! Sometimes we can talk to kind "strangers turned friends" better than we can those close to us. Plus we all share in either having BC or the fear of BC that we can relate in ways others don't understand.
I don't know who it was on here, but they said they were checking their nipple every time they could. I chuckled to myself, as I do that also and so now I feel that I'm not as neurotic as I thought as others have been there, done that, and it's just not me. Gives me so much comfort and peace. I'm now in a holding pattern until my biopsy, so I just wait, look on the site, and check my nipple
Peace, hugsand love to you all!
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Here for you all with your tests. Hang it there. I know the waiting is hard.0 -
Stasiam, it's very hard to talk to family or friends about this kind of stuff. It's been my experience that most people don't know how to handle it and disappear quickly. My dad committed suicide 13 years ago and it was my first experience that everybody abandoned me, even my husband emotionally. At the time I was shocked and hurt but mow I realize that most people just font know what to say or do so they don't say or do anything. And Glennie, I'm going crazy just waiting to have my mammo and whatever else they are going to do. I feel really bad for people who are diagnosed and having to make big decisions. I've done some reading up on BC and I just don't like the idea of any of the treatment options. My gawd. They try to downplay hacking off a woman's tit and then radiating it like it's pulling a tooth or something. It's sort of comparable to a c section. Ya, a lot of women have them but it doesn't make it any less of a major surgery like people tend to make it. I'm feeling a little bit down about this whole thing. I am a realist and at this point I think I'd be a miracle if everything's just A ok with me. 3 lumps, scaly areola, dimpling in my breast. To many symptoms to add up to nothing. Ok. It feels better just to write about it. I have a question for anybody who knows. Did anybody have fatigue and low energy with their BC? I mean before any treatments were started.
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well, I have fibro, so fatigue and low energy are just part of my life. It could also be due to stress and the worrying.Yup, it is major surgery, no matter that they call it a "simple" Mastectomy
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I also have fibromyalgia. But... Lisa, your question is one that has been on my mind. A few years ago, even a year ago I could work a ton, take classes and run circles around others. If I had a bad fibro day it would crash. But since last June (about when the nipple itching first started) I have been having so many fibro flare ups. I've been spending a lot of money on acupuncture and just ordered a sauna. But this past month I realized that my tiredness is different. I am tired a lot and even if I sleep I'm still exhausted earlier at night. My husband thinks I need exercise. I have been telling myself that it's because I'm at my heaviest, I don't exercise and my vitamin d level must be low ( I live in WI after all). But then there is a nagging part of me that thinks this all leads up to Pagets. Tonight I was even going to google BC/Pagets/fatique. But then I got lost in the book I was reading...
Then I think if I really had Pagets my nipple issue would be more than the pin pointed area of redness that is just vaguely outside the lines and my nipple would continue to itch like mad like it did before...
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I have fibro too so it's probably why I'm so exhausted all the time. I have just ignored this diagnosis for years. I'm not letting the docs put me on anymore drugs. The side effects always outweigh the benefits.
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