Paget's Disease of the Breast
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Hi Amunya, welcome to our exclusive club.I had Paget's and Dcis diagnoised a year ago this month, luckily I had DCIS only but it was still a very scary time in my life. I found this website a god send to me in every aspect , supportive knowing I wasn't alone in this I logged in here many times a day.I'd an operation and a month of radiation I'm all healed now, and finally back in work .I'm a bit older than you 47 this month, I looked at your other post saying everyone was a lot older than you although I'm 46 at the radiation clinic I was the youngest by about 20 years. The first few days my dad 79 brought me and sat in the waiting room I could see the shocked looks on people's faces when I stood up to go for my treatment and not my dad I thought it was quiet amusing I wish you well use the web site for anything advise a rant whatever x
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Hi Amunya ,
Sorry you have had to join this group but welcome.
I hope you get the help and support you need at this very worrying time, wishing you all the best.
Lou.x
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Hello Amunya,
Sorry that you find yourself here in our "club". Let us know if we can help/answer questions/listen to rants!
glennie
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Paget's Diagnosis. To say I'm completely stunned is an understatement. Floored, yet had been researching these sites like crazy over the last few months. Just a feeling that something wasn't right but still felt like I'd been hit by a truck when I heard the actual words. Started the usual way, small scaly dry skin at the very bottom of the nipple, so small but never went a way. Never bled, never itched, just a pattern of redness then dry skin that gave me false hope that it was eczema as symptoms and appearance didn't jive with what I was seeing online. Knew something was wrong in July. Had a negative mammogram at the end of July that gave me some more false hope for a couple weeks. Went back in, was referred to a Dermatologist who did the usual ointments for 3 weeks. Finally had the biopsy on 10/10 with confirmed diagnosis on 10/16. Met with an oncologist yesterday and will have the MRI today or tomorrow. Super thankful to have a sounding board here, hoping to share some of my concerns and see what kind of experiences you all have had. My emotions have been all over the place, I am type A, big planner and not knowing MRI results and a game plan has me freaking out. I've also had a general ache in the left breast leading into the armpit area for months as well but always attributed it to working out or some kind of muscle strain. I"m 45, no family history and never thought it could be anything sinister. Now wondering if it's related as my Pagets was found in the left nipple. Has anyone else experienced breast ache/heavy feeling? Wearing a sports bra is even slightly uncomfortable. Those of you who have did your MRI reveal anything more? That's really my biggest fear right now. I already know I will do a double mastectomy with immediate reconstruction. I've had 3 benign masses in the healthy right breast and don't ever want to go through this anxiety again or forever be looking in the rear view mirror. I'm just terrified there could be more going on. Those of you who have done a DMX with immediate reconstruction how was your recovery? Feel like I've written a book here, sorry! Hoping MRI results will provide me more clarity. My husband has been A-Mazing, I haven't decided when or how I"m going to tell my two girls ages 13,16. I want to keep them in the protected bubble for as long as possible! Hope to tell a few of my closest friends tomorrow, hate that I"m keeping this big dirty secret.
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Dear MBPooch, Welcome to the BCO community. We are sorry to hear about your diagnosis of Paget's Disease but very glad that you reached out to our members. We hope that you will stay connected and active and benefit from the support and information that our members have to share. While you are waiting for a response to your questions you may want to check out information on our main site about Paget's Disease.Here is a link to further information on Talking to your children and teenagers.Please keep us posted and send us a PM if you need any help with navigating the site. The MOds
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HI MBpooch, welcome to this exclusive club that you never wanted to join, we are friendly and you can ask us anything as we've all been there. I'm your age I was 47 yesterday, I'm a year out of diagnosis now, I was diagnoised last October and had my first lumpectomy 4 days before my 46th birthday followed by another lumpectomy as we didn't get clear margins, I got all clear on 21st November last year I had 20 sessions of radiation in January this year.
I didn't have a mastectomy so can't advise you on that I didn't have an MRI, when I'd my lumpectomy they found 3 cm of dcis which never showed up on my mammogram or ultra sound.
I understand exactly how you feel, floored is a good description of your feelings, I also had a painful breast for a long time if my kids leaned against my breast maybe not sore but sensitive.My aerola was red raw and itchy at times my dr referred me but said was probably ezcema.
I'm a year finished now and it passed very quickly in the end, but it's a very scary time please post any concerns and we will try to answer, best of luck
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Hello MBPooch,
We all are glad you're here but sorry you've had to join us. I think we can all relate to that moment of diagnosis. Scary, overwhelming, uncertain…all of it. Like you, I had redness and dry skin for some time before I casually mentioned it to my gynecologist last spring. I thought it was another one of those "pre-menopausal things" that we experience as we get into our mid-40s. Fortunately, she took it seriously from the first moment. She recommended a mammogram, ultrasound and biopsy right off the bat. I didn't have to go the dermatologist route first as many here have. Even then, I just figured it would be psoriasis or something like that but I'm always a "better safe than sorry" kind of person. Mammogram and ultrasound showed nothing so I went in for the biopsy. One month shy of my 45th birthday, I received my diagnosis. And I was shocked to say the least. I hadn't allowed myself to consider that it was something bad. I think the fact that the mammogram and ultrasound were negative caused me to let my guard down. But faced with Paget's, I tried to learn everything I could about it. As you've probably found, there's not a lot out there. However, I did find this community – and it finally made me feel not so alone. The ladies here are a wealth of information and answered so many of my questions. I did have an MRI and waiting on those results was the longest time of my life (even though it was only 24 or 48 hours). My MRI showed that it had not progressed past my left breast. And while I could've gone the lumpectomy/radiation route, I decided to go with a mastectomy and reconstruction. Like you, I'm type A, like to be in control and simply didn't want to be looking over my shoulder. My daughter was going to be entering her senior year of high school that fall and I wanted this to be behind me for her big year. My pathology results revealed I also had DCIS. They removed the sentinel node and that was negative as well. My mastectomy was June 2016 and I was out of work for 7 weeks. Recovery for me was not bad – no complications. I had an expander put in and my reconstruction/lift surgery was in December 2016. I was only out of work 3 weeks after that surgery. Today I'm free and clear from Paget's. I started taking Tamoxifen but the side effects for me were bad so I stopped after 6 months. I also had genetic testing done which revealed a CHEK2 mutation so I do have some additional surveillance for breast and various other cancers but I now feel in control and am confident nothing will get ahead of me.
You've got this! I know it all seems overwhelming right now but just take it one day at a time. Happy to hear your husband is so supportive – that's so important! And you may be surprised – your kids are likely more resilient than you think. My daughter took it in stride and flipped into "let's kick some cancer @$" mode right away. It made me so very proud. Talking about it and sharing your fears and concerns either here or with your doctors, family and friends will help share the load and allow you to keep focused and sane.
We're here for you and do keep us posted.
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MBPooch, welcome to the club you never wanted to join. We are here for you.
Can't answer any questions about recon, as I didn't have it. I had a flaky nipple on and off for a while, until it broke open and bled Memorial Day weekend,, telling me that something was really wrong and I should see the doctor. Mammogram, ultrasound and MRI showed nothing. Nada. Zip. Only the biopsy indicated that it was Paget's. And the pathology after the MX showed I had underlying DCIS, that didn't show up anywhere. Go figure.
And it's not a big dirty secret. You should tell people when you are feeling up to it. Don't feel obligated to tell everyone. I didn't tell my Mom until AFTER surgery, cuz I knew she would just worry herself into a panic attack and end up in the hospital. Maybe that's wrong, but it is what I felt was right. You listen to your gut, and do what you feel up to doing.
glennie
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I am not sure if it is appropriate to ask a question here if I have not been diagnosed, so please let me know.
I am a 42 year old. In may I woke up and realized that I had dried blood on my nightgown and realized that it had to come from my nipple. At that time I noticed that the pigment seemed like it was coming off of the same nipple. The discharge lasted for a couple weeks. I went to my family dr and I was sent to a breast specialist who is a nurse practitioner. I mentioned the color change and she kind of blew me off. She told me the discharge was gone which was good and to come back in 3 months for imaging (I had a neg mammogram and US a few months prior due to a lump that turned out to be a cyst). My nipple has gotten worse. The pigment is continuing to come off. I went in for another mammogram and US that were both negative. I saw the Breast specialist and this time she noticed the change in my nipple and mentioned “a skin disease of the nipple" i asked if that was Pagets and she said yes. She said she could not tell me it wasn't that. She said typically Pagets would erode my nipple and that was not happening on mine. She mentioned a biopsy, but said it was too aggressive and could make my problem worse. She is having me do an mri which I will do next week. And then follow up in 2 months with her unless my symptoms get worse.
My question for those of you who have been through this, should I be more proactive? It has already progressively gotten worse in appearance over the last 5 months, not better. I’ve never had eczema or any other skin conditions. Would it be wrong to ask for a biopsy if the MRI is negative sooner than waiting 2 more months?
Again, please let me know if this is not ok to post this here.
Thank you for reading.
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Hi Littlemel - Welcome to Breastcancer.org!
We understand you're worried and need answers... but as you have not been diagnosed, the correct place to post your comment would be the Not Diagnosed but Worried forum. We can't move posts, so we'll leave it here for now, but feel free to start your new topic under the Not Diagnosed but Worried forum.
Until you get answers from other members, here is what we have on our main site on Pagets Disease: Symptoms and Diagnosis. Hope it helps!
The Mods
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Thank you so much lorri70, kmrbailey and glennie! Being able to share and search on this site has given me a bit of calm. One of the only things that's calming to me right now actually! I was originally scheduled for MRI next week but my oncologist put a rush on it and I was able to get in this morning which I am super relieved about. As scared as I am for these results I just need to know where things are at with this. The arm pit pain that I've had for the last 6-8 months has me fearful that something else was going on that caused the pagets or that the pagers has spread. My oncologist while I said it was fine for her to give me the results over the phone said she wants to present all my tests and lab results with a conference of people a week from tomorrow. While I'm thankful to have other eyes since this is such unchartered territory I don't like the idea of a week of no action. What are some things I can do in the meantime? I'm wondering if there's a node biopsy that might ease my mind and or genetic testing that can be done this early.
I do wish I had some clarification on the biopsy pathology. The only thing I've noticed on there through google that makes me nervous is that I'm Her2 positive. Does anyone know what P63 negative means? Should someone be able to tell me stage and grade and whether it's invasive or DCIS or is it too early. Also wondering if I should be meeting with a breast surgeon during this next week as well since I'm 100% certain I want a mastectomy regardless of any other findings. Thoughts?
Again, thanks for all your support ladies, it's gotten me through these past few days!
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Thought I would feel better after receiving the MRI results but if it's possible I think I feel worse. I was told there was malignancy found, 1 cm, under the left nipple, I knew that would be there as that's where the Pagets was diagnosed. Was surprised to hear about a mass in the healthy breast, also 1 cm but I think what has me the most scared is another 1 cm mass that is inflamed on the left breast, up higher where I have discomfort and armpit pain. I'm not trying to jump to conclusions here but doesn't inflamed mean it has to be inflammatory breast cancer? What else could it be? I have no other symptoms, nothing visual or redness of any kind just general discomfort. Any insight or feedback would be great. I'm terrified.
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MBPooch,,,, I do not believe it means you have inflammatory BC, especially since you do not have the other symptoms of it.
Inflammatory breast cancer (IBC) is rare. It differs from other types of breast cancer in its symptoms, outlook, and treatment. Symptoms include breast swelling, purple or red color of the skin, and pitting or thickening of the skin of the breast so that it may look and feel like an orange peel. Often, a lump is not felt.
There can be lots of reasons for inflammation in the body. I know an infection can cause inflammation, like mastitis. Now that they know about that mass, can you get a needle biopsy of it? Are they concerned about it? You had benign masses in the other breast before, right?
When will you see your doctor? We know you're scared. Hang in there and breathe. We are here for you.
glennie
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Thanks for the response glennie19! This weekend has been torture with my mind wandering to a lot of dark places. I have nearly convinced myself it must be IBC with how sore my upper breast and armpit area are and every ache in my body I fear is from the IBC spreading. I can't imagine how unbelievably excited I would be to hear it is anything else! How crazy it would be to have 2 rare masses. I just wish I knew what else could cause the inflammation seen on the MRI. I've had this feeling for months so thinking it can't be mastitis. I have had benign fibrodenomas in the right breast so feeling like that could be the case again on the right side. I have an ultrasound guided biopsy scheduled for Thursday which seems like an eternity since I'm sure to not get results till Monday. I am getting a second opinion from an oncology/breast surgeon team on Tuesday that's closer to my house. Both back to back appointments so I'm thankful for another set of eyes.
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Another set of eyes is very good!! Can you call your doctor for an over-the-phone explanation of the "inflammed" mass? Or hopefully you can gets some answers on Tues at your app't.
Hang in there and do keep us posted.
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I'm with Glennie. Another set of eyes is never a bad thing. The initial waiting for appointments and results is maddening. For me, it was my darkest time. So many unknowns and I felt so helpless. I think I died a 1,000 deaths during that time. It was a 2-3 week period but it felt like an eternity! My recommendation is to try not to google your symptoms and "guess" your diagnosis. I agree with Glennie - maybe you can call your doctor to get some answers on what the "inflammation" means or could be indicating? It may set your mind at ease. Do the best you can to get through these coming days. Distract yourself - live your life knowing there's nothing in this moment that you can do so just keep moving forward. We're here - let us know how things go.
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Hi everyone, it’s been about a month and a half since I posted for the first time. I saw the GP I had mentioned and was dismissed agai. When I mentioned my concerns about Paget’s, she actually laughed and said I was worrying about nothing. I switched to another GP and he has been fantastic. I explained everything to him, but at first (as usual) he wanted me to try a steroid cream, and come back in two weeks. I had my second appointment with him this morning and as soon as he saw the breast again, he saw that it was more inflamed and weeping more than before. Straight away, he referred me to the breast clinic to see a specialist. I can't believe the difference in these two doctors! He was so helpful and listened to all my concerns. I'm hoping that a diagnosis for whatever this is is in sight because it's been a worry, as you all know. Thank you all for your advice. I will keep you updated.
All the best
Nic
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Nic, so glad you found a good GP who listened!! When will you see the specialist?
wishing you all the best,
glennie
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Hi Glennie, I don’t know when the appointment is. They’ll send the date out in the post. Hopefully it won’t be too long a wait!
Thank you 😊 Nic
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Kmrbailey and glennie19 - my mind went to the darkest of places ALL weekend. The more I tried to educate myself the more upset I was getting. I am meeting with a new team of doctors tomorrow and have been talking with the Nurse Navigator, she has been amazing. I called her this morning to try to rationalize my fears and she said she'd just received the MRI results from their radiologist and would go over every detail with me over the phone. What my previous doctor said was inflammation was actually enhancement. WOW. How one word had me going from wrapping my head around my Pagets diagnosis to thinking I had IBC as well. I needed a major internet intervention this weekend! The other two masses would only need to be biopsied if I want to do a lumpectomy for the Pagets but I don't need to do that if I'm planning to do a DMX. Discomfort I'm feeling is location of the 1 cm mass that popped up (that could be a cyst or a fibrodenoma) but more likely it's the nodes reacting from the Pagets itself or the biopsy.
I definitely learned an important lesson in staying off google and WebMD. Looking forward to my round table tomorrow with the oncologist and breast surgeon so I can get a plan in place to get rid of the Pagets. Thanks so much for listening!
Nic - Wishing great results for you. Please keep us posted!
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Yes, beware of Dr. Google.
It's tomorrow, so I hope you got good answers at your app't today. MBPooch.
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Long day, met with Oncologist, Breast Surgeon and Genetic Counselor. Lots of info and only a couple questions left to be answered. Ultrasound on Thursday to biopsy suspicious mass on the Paget side. If malignant then I can prepare myself for Chemo after surgery. Double Mastectomy was an easy decision for me. Meeting with plastic surgeon on Friday. Had a routine chest X-ray and blood workup. If all that's negative no more scans needed. Have a crazy sense of calm knowing what's going on. Did take a xanax prescription though for nights, having a hard time turning my mind off!
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Xanax is good, you need your sleep. In the bag for ultrasound.
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I agree that the worst time was after the biopsy... the 3-4 weeks of constant testing and being scanned every which way possible. 5 biopsies (1 lymph, 4 breast), MRI, PET, ultrasounds, mammographies. I understood the necessity of having all of them done but it was the sheer amount of waiting and thinking too much and trying to stay away from Google that was the worst part. I'm of the mind that even if it's a bad diagnosis, at least you know what you have. Once I knew what I had, I could quantify it and make a plan. Once we had a treatment plan, I felt better knowing how I was going to fight it. That gives you strength.
Tldr: So my advice to anyone newly diagnosed, is to keep your mind busy and don't over-analyze until you have the test results.
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Amunya, I couldn't agree more! Last Thursday I had 3 ultra sound guided biopsies done and just got the results this morning. Such a long wait with a lot of unknowns and too much time on google. Was diagnosed with Pagets on October 10th and the last couple weeks have felt like months. Both suspicious masses were benign/negative and mass behind the nipple is DCIS and very small. I can't begin to explain the amount of relief I feel. Scheduled for a double mastectomy on November 30th with immediate reconstruction and hopefully no surprises in the pathology. Plan to get the house ready for Christmas and just recover, enjoy the season and count my blessings that I was diligent enough to catch this early.
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MBPooch: DCIS is common with Paget's,,, I had it too. Glad that you got answers, and that the other masses were negative. MUCH RELIEF!!
We can be surgery buddies. I'm having my Prophy MX done on Nov 30th. Looking forward to being completely flat and having the risk factors removed!
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Wishing you a super smooth and quick recovery Glennie! I've had 4 benign masses now on the healthy breast and honestly can't wait to have this done and be on the other side of this. Let's stay in touch!
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Hi everyone,
Thank you again for all your advice. Although I'm still new to all this, and have no diagnosis yet, I appreciate having you all to talk with. It makes me feel a little less crazy.
I got my appointment for the breast clinic in the post today. Its on Wednesday 15th November, which is sooner than I was expecting to be honest. Although it still feels very far away. I just hope I can get the time off work to go. The letter came with an information leaflet about the appointment, saying "We aim to carry out as full an assessment as possible during your first clinic visit, so you may be in the hospital for up to three hours." It goes on to explain that they may carry out a mammogram, ultrasound, biopsy and/or blood tests. I'm hoping the biopsy will be done, as you all said it's vital in diagnosing or ruling out Paget's. I'll update you all on any news.
MBPooch and Glennie, I will be thinking about you both on 30th November and wish you both a speedy recovery, keep in touch! Take care everyone!
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MBPooch: Definitely stay in touch!!
Nic: do hope you get answers at your app't. And I hope you have no trouble getting off from work!! Please keep us posted.
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hello wonderful ladies. Just had a biopsy to rule out pagets. Since June (6months ago) i have been experiencing an itchy nipple and tingly. At first there was nothing visible on it. So when I visited bs(s) and my Dermo several times i was told eczema and brushed off. MRi and many ultrasounds all normal. Nipple gets worse and starts flaking slightly on one spot and gets red. Finally bs sees it again yesterday and looks concerned and does immediate biopsy painful and i have one stitch. Results next Friday at hospital. I’m so stressed. All the surgeons and dermatologist kept telling me is “we doubt it’s pagets because pagets doesn’t come and go it’s always there.” If it wasn’t for this amazing site i would have believed that lie. My flaking comes and Goes but always comes back! I have tried every prescription cream possible at zero avail. It’s actuallly got worse. I’m 34. Have 3 small children and am freaking out. Can someone pls pls pls tell me
1. What is the treatment for pagets without any underlying IDC?
2. What kind of biopsy did I get
he froze me and then used a tool that looked like a scalpel. He also put in one stitch and told not to shower until i see him in a week. 3. What were your pagets symptoms? Mine is itchy on and off and tingling as if discharge is about to come out but doesn’t. The flaking is so slight but visible on side of nipple. Once i rub the flakes off a slight red dot appears then goes away and this process happens over and over again like Groundhog Day.
4. It’s been 6 months! What if it’s spread by now???
I also posted in the waiting for results form but i figured I’d get more responses here from people who can relate. I’m a nervous wreck. Haven’t slept and am really stressing
i really hope i can find some sound advice here xox0
