Paget's Disease of the Breast
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Thanks Lou: I too have let it go far to long.......breast cancer runs no where in either side of my family, which we are all finding very curious.....fingers crossed for you...Monday, right? Plz let me know, I go Tues at 2:30pm....Have a blessed day
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Catherine and Lou, hope the results you get this week will be better news. Let us know. I just figured out how to add this to my favorites, so I'll check back for some updates from you both.
Stasia
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Hi, good news for me, MRI showed no other cancer so having a wide local excision next Wednesday and go from there. Catherine I hope you get good results tomorrow, and Glennie I hope your tests went well and results are good.
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YAY for good news, Lou!Hang in there, catlaw,,, keep us posted after your appt tomorrow.
Stasia: sorry you have to wait so long,, it sucks to wait. Hang it there!
My colonoscopy went fine and showed NOTHING. Awesome news! Thanks for asking.
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well, the itchy nipple came back again with a vengeance. So glad I did not cancel my appt with the dr last week! I'm almost positive I have Paget's in the early stages. So weird it comes back and it's always in the left nipple. I will have such relief when I meet with the dr next week. I hope they can do the consult and testing all in one day.
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I have been in hospital the last few days withpyelonephritis .After my MRI with contrast I got a water infection that went up to my kidneys. Just hoping to be well enough for op on Wednesday.Hope you get on ok Stasiam.
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oh no, Lou! So sorry to hear this. Hope this clears up quickly.0 -
Lou... Hope you can heal quickly from this! You don't need this on top of it all.
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I saw a surgeon today and she felt it was dermatitis as the rash wasn't very noticable to her and she said Pagets would have my nipple more decomposed. She prescribed me some 2.5% cortisone cream and sent me to ultrasound and 3D mammogram. The radiologist looked at them, did his own ultrasound and told me it's clear. So I'm to use the cream for 2 weeks to see if it clears up. If it doesn't then she will consider a biopsy. I'm relieved, but i know from the above posts that sometimes the ultrasounds and mammograms can miss Pagets.
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stasiam: it could be dermatitis,,, but really you cannot tell by looking at it. Nipple does not need to be decomposed. Mine didn't look that bad. Use the cream as prescribed,, and if not better,,, insist on a biopsy. As far as I know,, that is the only way to tell that it is Paget's. I do not wish to scare you,, but my mammo/ultrasound and MRI were all clear.
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Glennie: I was so excited to know I was clear, but then I also know that Pagets can be missed. Some of the photos on the internet of early Pagets look like mine. I also hope the radiologist was good. I'm still really uneasy, but I need to relax, I have freaked myself out over this for weeks. Tonight I spent all evening reading this whole forum again! We have a very busy April so I'll keep on the cream for 2 weeks, then off and see what happens. If it comes back ill schedule a biopsy. I just need to breathe. Hugs to all on here and thanks so much for the information!
Stasia
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Sounds like a plan! Keep us posted0 -
Hi all I am out of hospital and hoping they will do my surgery on Thursday as planned , but I am still on antibiotics so its debatable.Stasiam good news but like Glennie says the only way to test for Paget's is biopsy. My mammogram ultrasound and MRI were ok, and I also had not got a decomposed nipple. If the cream doesn't work you must go back, better to be safe than sorry. Hope all goes well for you.
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Hi lou,, glad you are out of the hospital. They might do surgery or want you to wait until you finish the antibiotics. I'm sure you are anxious for the surgery to be over with, but don't stress if they want to wait. They may decide it is better for your body to wait. We are here for you. Take good care of yourself, get lots of rest and eat well!((hugs))
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Lou. Hoping all goes well for you.take time for yourself. Will be thinking of you.
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Like many other breast cancers, Paget's is very treatable, especially when caught early. Often times there is DCIS with Paget's, but DCIS is also a very treatable cancer. It is not considered invasive, because the cancer is contained in the milk ducts. Standard treatment for DCIS is a lumpectomy and radiation, although some women opt for mastectomy.
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Hi. I just joined today, March 25, 2015. Tomorrow it will be a year that I was diagnosed with Paget's. All of you are right--it is a rare cancer and a very sneaky one, at that.
I also had an adenoma on my left breast which had to be excised as well.
My journey through all of this has been convoluted...I was diagnosed with Paget's on my right breast and then had a biopsy of my left for the adenoma. I was sent to a surgeon who proceeded to tell me it was basically skin cancer and she would take care of it. I asked her if I needed an oncologist and she said not now. She did send me for an ultrasound guided biopsy on the left breast. I left her office rather confused and worried. .I had my lumpectomies on both breasts on April 28 and two days later, the surgeon called with the news that they did not get to clear margins for the adenoma and by the way, path showed I had DCIS in my right breast where the Paget's was. We were stunned...no mammo or ultra had found the DCIS...not until they cut on me did they find it. So--now I went to the oncologist and had a flurry of tests...the surgeon had told me it would be another lumpectomy and then more excision on the the left. But, thanks to the onco...I had an MRI which found multi-focal DCIS, and then a stereo-tactic mammogram--my DCIS was high grade and multi-focal, and necrotic and grade 3. I had to have a mastectomy...
I am still dealing with the emotional piece of all this...and now I am thinking how will I know if I have DCIS in the other breast? Since neither a mammogram, biopsy, or ultra-sound found the DCIS in my right breast...how will I know?
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ModBod, with your history, you may be able to get regular/yearly MRIs done. It is certainly worth pursuing.
Thinking of you!
The Mods
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Modbod: calcifications can be a sign of DCIS and they show up on mammogram. Now that you have had DCIS in one breast,, they should be very careful to look for calcifications in the other one. And I vote for trying to get yearly MRI's too. I get my mammo once a year and 6 months later I get the MRI,, so every 6 months I get one or the other. I am less than 2 years out,, so not sure how long this will continue.0 -
Hi all, I have had my operation this morning and home now, just got to wait until 13 th now for path lab reports to see if I need any more surgery or treatment. Fingers crossed for good news.
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Fingers crossed for you, Lou,, but geeeez, that's a long time to wait. Can't they see you next week?0 -
no this is the Uk , NHS, that's normal.
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ahhhhh, got you.. I've heard that from others in the UK too. Hang in there!!0 -
Thanks for the response. Yes, I think I am a good candidate for an MRI, too, but I have received such poor care from the surgeon to the onco, that I do not know to whom to go next. I am so upset. It is like my medical team just wiped me off their radar...I also have truncal lymphedema, which the surgeon totally dismissed...and I recieved no care until I went to another surgeon who sent me to an LE therapist; and I also have a brachial plexus injury which the surgeon totally dismissed as well...she was so not interested in me. It has been a very, very disheartening journey.
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My BS dismissed my concerns about LE too. I got my MO to send me for LE therapy. Dang, you have had a rough go. I hope you can find some more supportive medical people.0 -
Hello ladies,
I have been reading all these posts... I have not been diagnosed yet. In a sense I am lucky (Sarcasm here) that I went to a new gyn almost two years ago. He was terrible! Insisted that I have a hysterectomy due to bc in family, my dad at 51 and my sister at 35. Gyn doc didn't even talk about tests, just insisted I HAD to have hysterectomy. Long story short, I refused because of other health issue that would cause any abdominal surgery to be very risky for me. Anyhow, I then called PCP and told him what gyn said and that I refused. My primary was outraged on my behalf and told me he'd find another doc for me so I could learn more about the risks and get genetic testing. Tested neg for BRCA mutation, as did my sister. The breast specialist recommended mammos and MRIs yearly 6 months apart. Fast forward to the past several months. My first MRI was supposed to have been over the summer, but....in June my husband and I decided to have my brother move in with our family so we could help him during his battle with duodenal cancer. Then on August 8, my husband had a massive heart attack while at work and died. Then on September 24, my brother lost his battle with cancer awareness. So, needless to say, the MRI didn't happen. Sometime around halloween, my left breast, the whole thing but especially the nipple and areola, began to itch like crazy. I discovered an area of skin discoloration just outside of the areola. I made a mental note to keep an eye on it. The discoloration at some point disappeared, but the itching remained. At that point, I figured it must just be my sensitive skin even though I hadn't changed any detergents, soaps, or lotions. Then February 9, the discoloration returned. I kept an eye on it. I saw my primary doc on February 27, the same day I already had my screening mammo. Doc said probably skin thing and prescribed soap and said we'll see if mammo shows anything. Had that mammo, then diagnostic mammo and ultrasound, radiologists said just benign density changes, but repeat in 6 months. I told primary I wasn't comfortable leaving it this way. He agreed and back I went to specialist. He said probably a skin thing, but let's do MRI. Then come back in a month if symptoms remain and he'd have a breast surgeon look at it to see about biopsy. Had MRI, primary called with results, don't remember the words, but something showed up and radiologist said probably benign but repeat in 6 months. Primary doc said he's comfortable waiting, said go back to specialist. Have back to back appointment with specialist and surgeon on April 13. When making appt, nurse for specialist said doc thought it's Paget's. So that's where I'm at.
Reading all of your posts today has helped me so much. It gives me such hope that this might not be as horrendous as I originally feared. I'm trying not to get ahead of myself. It's hard tho, because I have two children, ages 7 & 8, and as a mom, I have to think and plan ahead. My brother was the last of my side of the family. My sister in law is going with me to my appts, but she lives 2 hours away, and is very busy with work and her family. So I don't know if she'll be able to help with the kids if needed. Plus the breast cancer clinic that I go to is almost 2 & 1/2 hours away. Argh....and if biopsy shows Paget's, I have to worry about who I'm going to get to take care of my kids while I have surgery, whatever that may end up being. And then how am I going to take care of all of us by myself while recovering from surgery? See, it's impossible to keep my mind from going too far ahead. I know I need to keep in the present and wait until I know more, but the mom side of me worries about what's ahead for my little family. Nuts.
Thanks for "listening".
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((((Mommyduck)))) Wow, you have had a rough road, losing hubby and brother. I am hoping for your sake that it is not Pagets or any other cancer. But I can see you are the type of person who wants to plan for the unexpected. Can't blame you there. I am the same way.This is not the time to be shy. Reach out to friends, neighbors, your church,, your hubby's former co-workers, your children's friends' parents. Is there a local BC support group? Try to make a list of who could help with what. Who could baby-sit? Who could bring food? Who could drive you to appt's? etc, etc. People want to help,, give them a task! Will your insurance cover a nursing assistant to come for a few visits to help with things? Can you hire a housekeeper (even if temporary) to do the house cleaning while you are out of commission? Lots to think about,,,
I think there is a thread under the surgery section about making preparations,,,, you may want to look over there for more ideas. Hang it there,, and please keep us posted.
glennie found one thread: https://community.breastcancer.org/forum/91/topic/699896?page=26#idx_751
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thank you glennie. I will check out the thread. I'm not sure about the nursing assistant, the kids and I have Medicaid since daddy died. So not sure how that works. I do know having Medicaid makes it easier as far as getting tests done and appts made, no referrals or pre-cert needed, so a huge time saver.
Lis
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ugh, typo, it's Lisa
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Mommyduck-
We want to welcome you to our community here at BCO. We're sorry for the worry that brings you here, but we hope you find it to be a supportive and informative place.
It sounds like you've had a really rough go of it lately, we're so sorry for all you've been through. We're hoping that your tests come back benign, and that you don't have to carry this around on your shoulders any longer. Please keep us posted on how you're doing, and please use these forums as much as you need to, for info or support or just a sounding board. We're all here to listen.
The Mods
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