Paget's Disease of the Breast
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34 in Florida, no history BC in family and mom had 6 sisters wow. Almost a month ago I noticed my left nipple was little red inflamed and tip was almost raw. Didn't hurt or itch and no oozing. I used some coconut oil and went to obgyn he gave my nystatin. Used for a week then saw my breast specialist (I had a benign fibroid in other breast so I am established patient) he gave me fast once over and said here's a new cream. I was upset at his two minute look so I went to my dermatologist. He agreed it was red and by this time, 1 week ago my areola was now a bit red. He said keep using the cream. I went back today because I don't see any change I am allergic to many steroids and think cream might be making worse. So he gave me a natural ointment and in two weeks will do biopsy if I want. He thinks dermatitis says he see a lot and mine is not horrible. I was at a wedding outside 90 degrees in silk dress a month ago no bra and wonder if I just irritated the nipple then the cream is just maybe too harsh. I am allergic to singular, Bactrian and prednisone. had a clear mammogram and breast MRI just last week as a follow up to my benign fibroid.
Just looking for comments or suggestions
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Thank you for your good thoughts! Test came back negative for Paget's, which comes as a huge relief!! Hope to deal with the skin condition at the dermatologist's office.
FLmom34, I see no downside to the biopsy if you have concern it might be Paget's. A relatively painless procedure and a week turnaround time for peace of mind! Hope all turns out well for you.
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Oh glad to hear its painless. I was worried
Thank you!!! Glad you are negative. 0 -
FLmom34: what is your allergic reaction to prednisone? Taking it orally as I assume you did, may have a different reaction in your body than applying it topically. Steriod creams are "cousins" of prednisone, but not the exact same drug, just FYI. If you think the rash may be due to irritation, have you tried a very benign cream like zinc oxide or Vitamin A & D oint to soothe the problem and see how it goes? And I agree with CCSS,,, get a biopsy for peace of mind if it is not better in 2 weeks.CCSS: congrats on your negativity!! Woot!!!
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I used a&d the first week before nystatin. Now I am using Topicort. My dermatologist gave it to me yesterday. I am really hoping it's nothing. I have had health scare after scare the last 6 months. I am glad my MRI was clear, I don't itch, no pain, no oozing but it's a little red for sure.
Yes I am allergic to oral prednisone. I just figured the last cream probably had some similar steroid topical stuff in it and maybe doesn't agree with me.
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CCSS89 so glad all was negative. My MO agrees I should be seen sooner than 6/29 so I'm waiting for a call to schedule.
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glad to hear a negative biopsy! Question... Why did it take a while to get the results? Did they not have pathology there to test it right away or is that normal to have to wait for the results of a biopsy? I have mine on June 1, doing a wedge biopsy in the OR. I was hoping for results that day, but I will have waitied 6 weeks for the test anyway, so what's another week huh?
Karen, yes, for peace of mind hoping you can move your appt up sooner.
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i have had to wait at least 2 weeks usually 3 for biopsy results.
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I live in a very rural community so everything has to be sent to the next town over and then mailed back again...that might have been the cause for me waiting a week.
But I did a punch biopsy right in the exam room. The procedure took less than 15 min. Hoping you'll get back a negative result too!0 -
I'm having a wedge biopsy in the OR under a MAC. I've had many surgeries in the past and I get nauseated with generals, so I hope the MAC is different. I'm hoping since this hospital is affiliated with a large one in St. Paul/Minneapolis only 20 miles away that I will get results quickly.
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I do hope so, the waiting is terrible, I'm in the UK, NHS!! Good luck, I hope all goes well for you.
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Stas: hoping you get your results quickly and that they are good ones!!!0 -
had my pre-op today so I'm ready for Monday. I'm thinking it will be good news because my nipple has not had any changes since I saw the Dr. In March. Now it's just one small red spot and I mean small. I would think it would have started to get worse or have the itching come back. It would go away and then come back over about 6 months. Isn't Pagets rather fast acting? Plus both my nipples don't look the same at any given time. And then some times my bad one looks normal. I'm so confused. My primary Dr. Thought I should have the surgery done for peace of mind and then what if the itching comes back? Of course I was crying like an idiot in her office doing all the "what ifs" and then based on my symptoms she verified I'm in menopause. But since I've waited 6 weeks now for this biopsy i would have to start over with getting time off work. I ended up finding a co worker to work for me the next day.
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Stas: I think it is worth the peace of mind to have the biopsy and get it over with. Then you will know for sure. Glad you got a coworker to switch with you. Will be thinking of you on Monday and please report in when you can!0 -
thanks! Even though I've had a lot of surgeries (17; knees and bad OB history), so I know what to expect and I'm a surgical nurse, I'm now getting nervous! It's just the unknown. Plus it's at noon so I know I'll sure be missing my morning coffee! I forgot to ask if they have pathology on site or not. So I don't know if I get results on Monday or if I have to wait. I'm just glad the wait is finally over and I will have an answer soon.
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It's almost over,,,, hope you get an answer on Monday. **thinking good thoughts**0 -
Hope all went well Stas, thinking of you.
Lou
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so had Mammo, blood work and waiting for ultrasound. Did anyone get a FX that way or strictly through biopsy
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biopsy for me,,, everything else showed up negative.0 -
thanks Lou. Results later this week. So glad I have today off from work, I'm so tired. I think my fibromyalgia makes it harder to bounce back from even a minor procedure. Plus I was weeding and pulling large amounts of tall grasses and moving rocks all day sat and Sunday so now I can't make a fist and my arms swells up and hurts all night. I was trying to work fast and hard to get it all done. Uurgh.
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Hello fellow members who are interested:This link below contains 2269 scientific articles of Paget's disease of the breast....hopefully you find this helpful to you.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3263015/
Anyone interested to find out if there are any clinical trials of this disease may wish to consider writing to the Society for Immunotherapy of Cancer (SITC) to see if there's anything in the works using immunotherapy to treat it. Might want to be included in their mailing list so you get updates on this? Here's their link:
P.S.
This VIDEO link talks about the use of immunotherapy in cancer treatment (current hot cancer treatment topic) and fascinating to watch.
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my dr called with my results. NOT cancer! I'm super relieved! It is some perivascular chronic inflammation and said it will flare up here and there and the hydrocortisone cream may not help. So glad I got it done. But most of all, so glad I found this forum and met all of you and learned so much from you all. I've spent since March being super worried and you all kept me company. Thank you all so much for your caring. I will keep all of you in my thoughts and prayers and check back to see how everyone is doing.
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Stas!! So happy for you!!!!0 -
What a roller coaster! I have finally been seen by two breast doctors. Since February my right breast has shrunk almost two cup sizes. Both doctors have stated they have never seen this but they are sure there is nothing to worry about. The second visit has ordered a MRI to be sure but now the insurance has denied coverage. She is fighting them to get this completed. My question is had anyone else experienced this? I had intense itching from November to May with a discharge at times and it seems to subsided from a steroid cream my primary doctor gave me. I just don't feel comfortable accepting the answer of nothing to worry about. My right breast is disappearing and they have never seen this. Just does not seem possible that there is no explanation. Any ideas out there? My mammo and US were both clear the breast specialist said. do I accept that this is nothing to worry about or move onto another specialist that may have seen this before. Neither doctor offered to consult with another doctor to see if they had seen this. So confused.
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Momnorth104, have you lost any weight?? I am thin to start with and went to about 110 and noticed my breasts looked so much more uneven. The breast specialist even said "WOW have you always looked like that?" I had lost weight and recently been told by my chiropractor I had mild scoliolis, (10 years at a sendentary desk job with poor posture) so those two explanations seemed to make the fact that I was pretty uneven sensible. Still, because of other issues, similar to yours, the radiologist ordered the MRI. Now, the MRI was clear just showing a benign cyst but I still have this nipple stuff happening. I have read here that Paget's can go undetected in the MRI so I went to my dermatologist and he did a punch biopsy in two places yesterday. Do you have a dermatoligist? If so, I would suggest going and first visit say, biopsy this. My breast specialist didn't even seem concerned over my nipple which I found annoying, but my dermatologist said "yes, we have some inflammation, thickening and stuff happening here." He is confident that its an infllamed/infected gladular tissue but I am a health anxiety fruit loop so better to be safe. I would keep pushing your insurance for the MRI, you should call too sometimes you can push them on phone. Or, get the othe doctor to also write the referral, then you have two to go to insurance with. In meantime, maybe see your dermatologist. Good luck !!!0 -
I got my results and benign !
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YAY FLmom34 !! So happy for you!0 -
So glad to have found this site and discussion board! Wishing all the best to each of you.
I have been dealing with a very itchy and sore nipple off and on for several months and haven't really given it much thought. I'm 48 and so many hormonal changes occur at this age I blamed that. This past round was 2 weeks of sore and itchy so I made a doctor appointment to find out how to relieve it. I ended up with a small amount of bleeding (drops only) and a small scab which came off just before my appointment. I have no lumps, no scaling or any of that. I have had sticky straw colored spots inside my bra at times which I thought weird but has been at random times and never days in a row so I dismissed it. Doctor noticed a small dimple on the nipple and consulted with another doctor. I'm off to have diagnostic mammogram and ultrasound in 2 weeks to rule out bc and/or Paget's. If both negative then a biopsy. I'm kind of concerned why in that order if they want a biopsy in the end. Do they actually suspect cancer and want to confirm vs rule out? I'm probably over thinking it
This is taking me by surprise as I was just looking for hormonal balance! And now of course I am looking at "the girls" with new suspicion and that breast does look a bit lopsided on one side of the nipple when I'm laying down.
I'm just posting here as an outlet. I'm a little scared but also believe that worst case is still a positive outcome for me as it seems early if it is in fact Paget's. Hubby doesn't seem to want to discuss it unless we have results. Sounds rude of him but I think is denial as both his parents died young from other cancers.
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Dear wantmymommy, Welcome to the community. We are sorry that you are having these changes but glad that you reached out for support. Actually we are thinking that you might want to post your story on this thread Nipple Dermatits versus Paget's Disease. Take a look. It is more geared towards those who are not diagnosed but concerned and may hold more support for you. The Mods
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I will, thank you!
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