Nov 4, 2017 07:24AM glennie19 wrote:
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.
Posted on: Dec 8, 2012 05:13PM
During the summer of 2011 I began to experience flaking on my right nipple. I showed it to my gyn at my yearly check-up, and she recommended using some hydrocortisone cream on it, and getting a mammogram. The flaking continued off and on, and I finally got a mammogram about six months later. The mammogram showed some calcifications in the nipple, so I was sent back for a diagnostic mammogram and U/S. Both showed unusual changes, however, the radiologist was not concerned and recommended returning in six months. However, at that point it had started to weep clear fluid occasionally, so he suggested seeing a breast surgeon.
Two months later I went to see the surgeon, who recommended a biopsy. It was the summer of 2012, and we were preparing to go on vacation. I decided to put it off until I returned from vacation. I came home and saw the surgeon again in September and had the biopsy. I was diagnosed with Paget's Disease of the breast as my primary cancer. No secondary cancers were found. The entire nipple/ areola complex was removed two weeks later, followed by seven weeks of radiation.
At this point (December 2012) I don't know if I'm going to do any reconstruction, but I might. Paget's comprises only 2% of all breast cancers, but I would be interested to chat with anyone else with the same diagnoses.
Posts 901 - 930 (1,103 total)
Nov 4, 2017 07:24AM glennie19 wrote:
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.
Nov 10, 2017 06:28AM Lala-44 wrote:
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 xox
Nov 10, 2017 08:04AM glennie19 wrote:
You probably had a punch biopsy, which should core down thru the layers of skin to get a good sample.
The treatment for Paget's is either mastectomy or lumpectomy with radiation. they will have to remove at least the nipple area and a "clear margin" around it. I also had underlying DCIS but surgery was the only treatment needed for me.
Mine was itchy and flaky on and off too.It came and went,,, but every time it came back, it seemed worse,, but it would still go away. I thought I had some nipple discharge at one point. I let it goes for months, intending to mention it to my GYN during my annual (summertime) but on Memorial Day weekend, the flaky area cracked open and bled, and I knew I could no longer wait.
I had a mammogram, ultrasound and MRI,, NOTHING showed up,, only the biopsy showed Paget's. I decided on a mastectomy because I didn't want to do radiation and I figured with my breast size, once they took off the nipple/areola area and a clear margin,,, it would be really weird looking. Like an upside down plate on my chest. As it turned out, I had underlying DCIS, that no one saw on imaging,, so I'm glad that I had the MX.
I was also told by 2 doctors, that it "doesn't look like Paget's". Well they have studied worse case pictures,,, not early pictures!! There is no way to tell except by biopsy. And I can tell you, in my case, it definitely came and went. And I know of others that it did that too.
I'm glad you posted here, as I always check this thread. I hope I helped with your questions, and feel free to PM me or post more here.
Please keep us posted with your results. Wishing you all the best
glennie (4 years since MX, BTW!)
Nov 10, 2017 08:16AM Lala-44 wrote:
thank you so much for replying glennie. I knew something wasn’t right when it just wouldn’t F-off. To the untrained eye i understand how it could look minor but for me it definitely isn’t normal. I’m terrified of chemo and the fact that it’s been 6 months already is making me freak out even more. Can’t belive i have to wait a week! The flaking looked like grains of salt if that makes any sense and it was alwayssss In then exact same Spot and nowhere else on nipple a spec of red on the side and it felt slightly tougher until skin came off then was smooth. I’m just sick of having to moisturize and care for one nipple!!! Makes no sense. If it were eczema it would be on both :( is pagets invasive? My fear is underlying DCIS also despite clear Mri 2 months ago...
Nov 10, 2017 10:17AM glennie19 wrote:
Lala, Here's a link to an article on Paget's, in case you haven't seen it. As far as I know, Paget's itself is not invasive, but it is very likely that there can be underlying DCIS or IDC. Have you had a mammogram? DCIS is easier to see on a mammogram,, the calcifications show up in a line,, as they line a duct, but again imaging is not perfect. That's why your choices with Paget's is either a MX to remove the whole breast (in case of underlying disease) or Lumpectomy with radiation to zap anything else that may be in there.
I know you are scared,, but try to take deep breaths and find a way to relax while you wait for your results. Hang in there.
Nov 10, 2017 10:51AM Lala-44 wrote:
glennie you are a doll. Thanks for the link, i had already read that one a few times...my concern is possible DCIS since it can be missed on an MRI but not so much IDC as i m sure all the other tests and ultrasounds should have picked it up since it’s not as easily missed but you never know! Have not had a mammo because I have breast implants and it wouldn’t Be as clear. Also i am 34 with very dense fibrocystic breasts so it wasn’t recommended but depending on the biopsy maybe if needed I’ll have one done. I don’t have a great feeling about this.
Nov 10, 2017 01:29PM Lorri70 wrote:
Hi lala44,hopefully you won't be hanging round here too long, the waiting is absolutely the worst part the not knowing if you have it or not, it's very hard to diagnoise. I was diagnoised october16 just before my 46th birthday.I had a bright red rash on my areola quiet small it would itch like mad at times and other times would be fine, my own DR thought it was a fungus referred me to the breast clinic the DR there mentioned Pagets but said it looked nothing like Pagets and thought it was ezcema. I had mammogram and ultra sound all were clear then the biopsy showed Pagets and 3 cm of DCIS my treatment was removal of nipple I'd to have a 2nd lumpectomy cause I didn't get clear margins. I was terrified of chemo as well. I was devastated about the whole thing but I was thankful I only had Dcis.
My treatment was 20 sessions of radiation, if you have only Pagets or Pagets along with DCIS you would have lumpectomy andradiation. I'm fine now a year on and next month I'm going for consultation for nipple reconstruction I'm really looking forward to having this and ending this chapter of my life take care and post here for advise or a moan anything really I found this site invaluable
Nov 10, 2017 04:14PM glennie19 wrote:
Lala,, good that the breast discharge was sent off also. Hang in there!
Nov 12, 2017 08:16AM - edited Nov 12, 2017 08:16AM by Lala-44
thank you so much ladies. Your support is heartwarming. I'm just uneasy because my nipple has been behaving weirdly for 6 months. I just don't get how everyone can say it's eczema when it's only on one spot on ONE nipple! Like how weird is that? Eczema isn't usually unilateral. I'm relieved that the breast surgeon finally did a biopsy as I don't want to wonder about the flaking anymore. It's so so minor and looks like grains of salt but it always reoccurs. To me it also feels like the skin there is slightly rougher like chapped lips. Once it flakes it gets smoother. Also is It normal that after the biopsy he Put IN a stitch and bandaged me up and told me not to touch it or wet it for an entire week until he sees me with results next Friday. I'm honeslty bricking it. It's a Friday at 2pm. God forbid it's anything, I'll have to go through the entire weekend because we all know nothing gets done until Monday's! Arghhhh just the thought of that makes my stomach turn :
Nov 12, 2017 12:01PM kmrbailey wrote:
Glennie, MBPooch - best of luck with your upcoming surgeries. Wishing you both a speedy recovery! I'm sure you're looking forward to getting through this next stage of the process. I did my second surgery at this time last year and recovering at the holidays was actually really nice. FWIW, I used the VitaMedica Recovery Support regimen leading up to and just post surgery. If you're concerned about healing, it may be something to ask your Dr. about. Although it's not a prescription, you should obviously always check with your Dr. before taking any vitamin regimen.
Lala, like the others have said, the waiting is the worst. It was worse than the actual diagnosis for me. I don't like the unknown. Good you got the biopsy and just try to keep yourself distracted (as much as possible) between now and Friday. Easier said than done, I know but we're here for you if you have any questions. You've got this!
Happy Weekend, All!
Nov 12, 2017 06:12PM kmrbailey wrote:
You're most welcome, Lala! As for me, I was having off and on flaking, itching, discoloration and soreness for quite a while but intermittently. I mean like at least 6 months, maybe more. I'm embarrassed to say that I fluffed it off, attributed it to being something hormonal or a result of a sweaty work out. In fact, I nearly forgot to mention it to my GYN doctor at the end of my annual exam in March 2016. It was such an offhanded mention – I thought maybe it was a pre-menopausal thing (I was 44 at the time). She took it very seriously. She said, "Well, it could be a skin thing – like eczema – but we won't know unless we get a biopsy." She ordered a mammogram, ultrasound and a biopsy. Still, I figured it wasn't anything and frankly thought the biopsy was overkill but went through the motions anyway. Mammo and ultrasound showed nothing but the biopsy came back as Paget's – much to my complete surprise. Five days later, I had my MRI which also showed nothing. I went for the mastectomy (June 2016) as I did not want to have radiation and I didn't want to be looking over my shoulder for it to come back. I had my sentinel node removed and it was clear. There was underlying DCIS so I was glad I went with the MX. My reconstruction surgery was December 2016. I'm lucky that I had no complications with either surgery or recovery. I now have mammograms alternating with MRIs every 6 months because I tested positive for a gene mutation on the CHEK2 gene (different than the BRCA1 and BRCA2). Otherwise, this is all in my rearview mirror!
Nov 12, 2017 07:19PM MBPooch wrote:
Lala - Hang in there!!! The not knowing is the absolute worse! Trust me, I googled like crazy as it gave me a sense of calm to know I wasn't the only one going through all this, yet it exposed me to lots of undo stress thinking I had all kinds of things I didn't. I noticed the flaking in one nipple over the 4th of July. It never looked like the pictures you see online and the symptoms were hardly noticeable, just a flaky nipple. Saw my Gyn mid July and got a mammogram that came back clear, she said to try over the counter Cortisone. Saw my Gyn again in August for my annual and told her Cortisone was not working and she sent me to the Derm in September. Tried prescription creams in September and finally went back on Oct 10th for a core biopsy. You definitely did the right thing having that done as it's the only way to confirm. At the time of biopsy he also gave me a steroid shot just in case the biopsy came back negative. I also had one stitch but was not told I couldn't shower. Wouldn't you know the steroid shot did wonders and my nipple looked completely normal. I did feel though that it always felt a bit rough even when it looked fine. Shocked to find out on the 16th that it was indeed Paget's.
I had an MRI after which did show something under the nipple as well as another mass in each breast. I think it's positive news that your MRI didn't pick anything up. There could still be DCIS but the odds of it being IDC are low. I happened to see an Oncologist first who was the one that ordered the MRI, I then had a follow up Ultrasound. Ultrasound techs said had I come in after the mammogram they wouldn't have noticed anything. They were able to zero in on the two small masses because of the MRI. I chose to do biopsies of all 3 spots as I had to know what I was dealing with. Thankfully the other two masses are Fibrodenoma and confirmed DCIS under the nipple. I was also paranoid that things had spread.
I'm in Chicago and my doctors work as a team so the oncologist, breast surgeon and plastic surgeon all work together with a nurse navigator. I've met with all and feel really comfortable with my plan. My double MX is scheduled for the 30th and as long as pathology comes back clean I will have a direct to implant at the time of surgery and no other treatment required. That is truly best case scenario.
Kmrbailey - your story gives me so much hope! Today is my birthday and I just turned 46. Seems so young to be going through this. Genetic testing also came back clean so hoping one year from now I've also closed the chapter on this book! So glad you are doing well!
Take care everyone!
Nov 14, 2017 06:08AM - edited Nov 14, 2017 06:10AM by Lala-44
once again, thank you ladies. Your reassurance is invaluable. I also sometimes think and wonder if the biopsy was overkill because if you would see it you wouldn't notice unless I pointed out to you exactly where it is. The nipple looks normal. The spot is so tiny and I mean tiny like a freckle. It flakes ever so slightly. What really got me wondering was when the creams and stuff weren't working at all not even one bit. After 6 months I got fed up and went back to consult the Dermo who after the 4th visit patronized me and told me to
“Moisturize your nipple and don't examine it anymore, don't even look at it. I know pagets I've seen 3,000 cases and it never comes and goes once it's there it's permanent. If you aren't happy with me would you like a second opinion with another Dermo?" Right then and there I should have said yes and told her where to go but I didn't. Instead I took her advice and left but knew deep down that something was off. When it's continues I went to breast surgeon one last time ( he saw me this summer) and he suggested the biopsy immediately. So here I am. I wouldnt be so shell shocked if I were older but I'm 34! I feel as though it's too young to start this bs stuff. Risks of recurrences are higher and of IDC developing down the line. I'm just very nervous for Friday. Can't imagine walking in there and him telling me it's pagets! I'll honestly freak.
Nov 14, 2017 07:10AM lou23 wrote:
Lala hope you get good results Friday, and I hope those who are having surgery this week all goes well for you.
Nov 15, 2017 04:01PM glennie19 wrote:
Lala, I am hoping for good results for you. That Dermo is wrong,, cuz mine came and went. the flaking would appear and disappear, cream or no cream. But as time went on, I did notice that the area of skin seemed to thicken a little bit.
Honestly,, what alerted me to the fact that it could be Paget's was a random email sent to me by a former co-worker, listing the symptoms of Paget's, titled something like "Did you know that breast cancer could appear like this? It's not always a lump" And I remembered that email, although it was several years later when my symptoms appeared. I told her that email was the reason I got it checked out.
And it SUCKS to be 34 and dealing with this. Sadly, I see younger women all over this board dealing with BC. It used to be rare to see it pre-menopausal,, but not any more. BOOOOOO.
15 days to surgery! Going slightly crazy getting ready.
Nov 15, 2017 05:28PM ashleyalyssa1991 wrote:
I'm 26 years old and am being sent for a mammogram and ultrasound of my right breast this upcoming Saturday.
About a month ago I noticed that my right areola looked very dry, scaly, skin was risen a little. Since then I've been having yellow discharge (seems to come and go). Over the past 4 or 5 days my breast seems to be hurting a lot, lots of burning and pain. No itching. Seems to be about the size of a quarter maybe a little bigger.
I tried treating with polysporin and hydrocortisone and warm compresses but nothing has seemed to resolve it.
I went to the doctor yesturday which he suggested to get these tests done.
He said if they come back clear he will refer me to a dermatologist to get a biopsy.
Never been pregnant and am not breastfeeding.
Any words of advice would be greatly appreciated! Pain seems to be getting worse, it's not directly over my areola, seems to be coming from within the breast...
Nov 15, 2017 09:34PM Lala-44 wrote:
glennie— sending you great vibes and best of luck on your surgery ! I’m sure all will go very well :) yes that silly Dermo said that and I knew right then and there that she didn’t know what she was talking about.. I’m glad I got this biopsy done. Now I’m just trying to keep busy until Friday.
Ashley— I replied to you on your other thread. So sorry you are dealing with this!!
Nov 16, 2017 07:08AM glennie19 wrote:
Ashley: sorry you are going thru this. Glad your doctor is taking it seriously, as your age can work against you when dealing with potential BC symptoms. (oh, you are too young for that) Ask if they can biopsy the discharge, if there is enough to get a sample. Hang it there and keep up posted.
Lala,,, one more day!!
Nov 16, 2017 09:42AM Lala-44 wrote:
glennie, good idea! The dr should totally biopsy the discharge too. That’s what they did for me... I wonder if the discharge would shed Paget cells? Yup, one more day for me. Not sure how to feel. I have an unusual sense of calm as though everything will be ok. It has to be, right?
What are you doing to prepare for surgery? And remind me again what type exactly are you having? Xo
Nov 16, 2017 11:37AM glennie19 wrote:
I think the discharge would show some cells if there are any,,, it's worth a try anyway.
I'm glad you have a sense of calm!! YAY!!
Having a prophy MX on Righty, tired of being lop-sided and trying to deal with truncal lymphedema, working around the remaining breast. Arranging people to walk dog, cleaning house, laundry, stocking up on dog food, etc.
Nov 16, 2017 05:21PM Lala-44 wrote:
good for you Glennie! I’d do the same. Always good to arrange for some help when you will be recovering, I find some meal prepping and freezing helps a ton to avoid cooking when you can’t :) I’m actually having abdominal surgery in January to fix a botched csection incision and it will be pretty complicated so I plan on doing the same for my recovery.
Gosh, the nerves are setting in again I feel like I may not sleep. Do you have any tips that helped you deal with the night before biopsy results? I think the unknown is worse than anything else..
Nov 17, 2017 09:22AM Lala-44 wrote:
biopsy results today at 130pm. I made the mistake of opening my bandage and having a look and I freaked! The nipple is peeling like crazy and looks terrible. I think he did the biopsy a few cm’s Off from where it should be. Not sure if that makes a difference... regardless I’ve never seen my nipple peel and bleed as much as it is now. Maybe it’s the product they put or the gauze I have no idea but something isn’t right. I’m so nervous right now. Don’t even know what to do with myself :
Nov 17, 2017 10:53AM glennie19 wrote:
OH, wow, Lala,,, hoping for the best for you. was it a punch biopsy?? Or some other kind?
Nov 17, 2017 11:01AM kmrbailey wrote:
Sending you lots of positive vibes for your results, Lala! It's normal to be nervous...and regardless of the outcome, know that you'll get through it! I remember looking at my wounds shortly after my mx...it was shocking, to say the least. You'll be amazed how your body heals though. I honestly can't believe the difference between then and now. Do let us know how you make out today!
Nov 17, 2017 01:55PM - edited Nov 17, 2017 01:56PM by Lala-44
so I have my results!!! It's keratosis Pilaris which is a type of benign skin condition kind of like eczema. I am so relived. If you would see my nipple though you would freak! It's peeling like crazy and even bleeding from the cracking and peeling. Sometimes things really aren't what they seem! I feel very relived and will be relaxing and sleeping for the first time in a week tonight! The breast surgeon told me to go back to Dermo as it is a"skin problem and not a breast problem." Pagets has been finally ruled out! Thank you to you wonderful amazing, inspirational women for keeping me company these past months. I wish you all nothing ut the very best and hope you all heal quickly. I will come back on to check on how your surgeries went etc. Be well XX