Nov 25, 2018 01:17AM lou23 wrote:
Hi, oh dear I hope you get your results soon, the waiting is terrible !! Fingers crossed for good news for you.
Let us know how you get on.
Posted on: Dec 8, 2012 06:13PM
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 1111 - 1140 (1,145 total)
Nov 25, 2018 01:17AM lou23 wrote:
Hi, oh dear I hope you get your results soon, the waiting is terrible !! Fingers crossed for good news for you.
Let us know how you get on.
Dec 13, 2018 06:39PM Hopetihopeful wrote:
Just wanted to give an update. The biopsy showed "no signs of malignancy" , so yay! Good news!
It did take two weeks of a very strong cortisoid cream twice a day before it even slightly improved, but now it is all clear. The last of it cleared a couple of days before I got the biopsy, which almost felt like an act of spite.
I will definitely be keeping up with my self examination after this tho!
Thank you so much for the kind words while I was waiting, it really did help!
Lots of good thoughts,
Jan 23, 2019 03:10PM Ssl9281 wrote:
I have had an ongoing issue with my left nipple for the last 6 months that I am convinced is Pagets but I keep getting brushed off. I'm a 37 year old single mom. Since last June, my left nipple peels pretty much weekly (it always seems to be on a Tuesday which sounds crazy but it's true). After the skin peels, it becomes sensitive & itchy for a few days then goes back to looking normal. The center of the nipple does have a crack in it but no open sore or nonspontaneous discharge. My gyn said she didn't know what would cause this, this was August & told me to see a derm. I saw the derm and a breast surgeon (at my insurance) 2 weeks ago...very long wait due to being a new patient and my own dragging my feet. In the meantime, I have tried every imaginable type of cream to help this nipple but it keeps cycling on with peeling then looking relatively normal. The derm brushed me off saying it was dermatitis bc I am “active"...I made the mistake of wearing gym clothes to the appointment. The breast surgeon said that with pagets, the nipple would have broken open by now..I guess the crack doesn't count as open? The nipple is also sensitive sometime when I don't wear a bra...like when I sleep, just the pj top against the nipple can be painful but this is not all the time. Recently, the peeling skin has spread to the inner part of the areola as well. When it's not peeling, the skin is sometimes dry or it looks mostly normal. To me, the tip of the nipple seems to have some small cauliflower like bumps but apparently I'm the only one who sees this. Right now, the surgeon advised me to switch to the sensitive skin laundry detergent & all cotton bras and she may biopsy if no improvement when I go back in March. I really don't feel comfortable waiting that long seeing as this has already been going on so long. I am so frustrated and feel totally brushed off. I have no history of eczema and all this happening on just one side is very concerning to me and I want to deal with it before it spreads. I don't know what to do, no one is listening. Does this sound similar to anyone else's pagets symptoms? I really feel like everyone feels I’m crazy but something is not right. The nipple is also slightly more pink than the othe side but not all the time. Thanks for reading all of this
Jan 23, 2019 03:22PM Kissy72 wrote:
If you have a strong instinct that something is wrong, I would push for the biopsy now. I had a masectomy on 12/19 for Paget's with DCIS. I think Paget's presents in different ways. For me, I did not have skin issues until the past few months and they were very minimal. I had a change in nipple sensation, followed by a flattening of the nipple, and eventually nipple discharge. These symptoms unfolded over the course of years with me brushing them off as an unresolved issue related to breast feeding. I brought it up to physicians too I continued to get clear mammograms. Trust you're gut.
Jan 23, 2019 09:37PM MBPooch wrote:
Ssl9281 - I agree with Kissy72. Pagets does not present in any one way. My symptoms were much like yours. Constant peeling but no oozing, no bleeding, no itchiness. Most times it looked completely normal. I did the over the counter creams on my own, went to my GYN who sent me to the Dermatologist. Derm wanted to try 2 weeks on a steroid which of course did nothing. After those two weeks I demanded the core biopsy since that's the ONLY way to test for Pagets. I was not surprised when it came back positive. In the days following my diagnosis the dermatologist and oncologist could not believe it was Pagets. When my nipple was not in the peeling phase it looked completely normal. The only other symptom I noticed was over time the nipple seemed to be hardening, not as soft as the non-paget side. Trust your gut and find someone who will do the biopsy for you.
Mar 23, 2019 04:01PM Marie4plus3 wrote:
hi all. Hoping I can have some feedback. A little long. I have had itchy nipples for almost TWO YEARS. It started as one, then the other started and the first one stopped. Back and forth and now both. Gyn sent me to a specialist a year ago-which was a positive. Extensive films taken and all he said was that I had inflamed or enlarged milk ducts. I thought nothing of it. I BF’d 5 kids so whatever. Today after reading here some I did a visual inspection. What started as internal itxhing is now both but with a small circular patch on each Ariola. Now, another thing is about a year ago I had noticed lumps appearing in my armpits. THey would appear and then disappear. both armpits. painFUl. noW my nipple hurtsand is purple ish. I’m so over this. The specialist did say that I could return and have a biopsy but at that time I had no idea so I didn’t. Does it sound like Paget ‘s
Mar 25, 2019 09:05PM Texasborn wrote:
I had cancer lump removed last year and radiation. I now have a dimple in the very end of my nipple. Looks like a volcanic shape. No itching just a dark scab that feel off. I am going for a mammo and a dianogistic look next week. Does this sound like pagets?
Mar 26, 2019 02:22AM lou23 wrote:
Hi, sorry to hear you had a lump and needed radiation.
All I can tell you really is the only way to detect Paget's is a biopsy, it doesn't show up on mammogram ultra sound etc.
Extreme itchiness is the first symptom, usually a scab and discharge.
Apr 5, 2019 01:29PM sflow wrote:
I have been reading these posts with interest. I had IDC stage one 12 years ago and had lumpectomy and radiation and 5 years of Arimidex. All has been fine since, but a few months ago, I started experiencing pain to my other breast. It is more in nipple but also in breast. I visited 2 PCP's and received cream and a mammogram which showed no changes. I was refused an ultrasound because no changes. I am 69 and of course post menopausal. I made an appointment with a dermatologist, but I really have no peeling or outward signs of skin problem. Am I going to the right doctor--I have read about skin biopsy, but don't know if she would do a biopsy. Comments and advice welcome
Apr 8, 2019 02:16AM lou23 wrote:
Hi, sorry to hear your having problems with your other breast.
I'm not sure if a dermatologist could help, very difficult if nothing to see, perhaps breast care unit could take another look at you.
It doesn't sound like Paget's , and I don't think you could have a biopsy to find out if nothing to see.
Good luck, I hope you find out what the problem is.
May 12, 2019 10:59PM kmrbailey wrote:
Hi Sam, gosh that’s frustrating! I think all hospitals are different. For me, I had my biopsy done on a Tuesday and results by Friday afternoon. However, that may have been because I tested positive for Paget’s. My experience with my tests is that they were quick to let me knowwhen I tested positive for something but slower when it was negative. I don’t think they always realize that we are hanging by a thread waiting on news. Did you contact your doctor to see when you could expect to hear?
May 13, 2019 01:15AM - edited May 13, 2019 01:15AM by Dixieleedom
I went to my first pap the other day after 3 years.... I've had a dry itchy nipple for 5 years but thought possibly eczema since I have that on my arms. But after many many creams and no change I thought it might be time to check it out. My doctor referred me to a surgeon.... I'm pretty scared... only 28 years old with a 5 year old and 3 year old. My nipple has changed over the year it's flattened a lot. What should i expect? A biopsy first?
May 13, 2019 09:16AM MBPooch wrote:
SamAmomof3 - That seems like an usually long time to wait. I had my results within a week. Try calling the office for an update.
Dixieleedom - They may suggest you try a prescription steroid cream first. Next step would be a punch biopsy as it's the ONLY way to confirm. A mammogram and ultrasound will not detect Pagets.
Keep us posted ladies!
May 13, 2019 01:22PM MBPooch wrote:
I definitely would and push for the biopsy!
Jul 10, 2019 03:06PM - edited Jul 10, 2019 03:15PM by Spoonie77
Hi ladies - I've been reading up on your experiences the past few days. Thank you for sharing your journeys and how this cancer seems to appear so differently in many patients and the difficulties you've had in getting diagnosed. All this shared info has been very helpful. I feel like I have a better idea of what I may run into in the next few weeks. It also makes me feel better about my MO referring me to my SO (sur onco) for further treatment/dx, as she said Mammos/US would not be very helpful with the new nipple involvement. I saw that mentioned often by many of you.
Anyway, I'll try to make my long story short...
I went in for a "we need to see you asap" visit with my MO on Monday. This was a result of me sending them picts of a lump I found on my L nipple prior to the 4th of July and my ongoing nipple skin condition. During the appt my MO mentioned one of the possibilities may be Paget's when I saw her. This lump is on my breast that had a LX/SLNB/RADs and was treated for IDC & DCIS (upper outer quad) over the past year.
Ever since RADs ended, I had and was told by many on my team "normal" healing process for my nipple. It's now been 8 months since RADs ended, Oct 31 2018. During the whole time since, my nipple has peeled, flaked off and on, had a clear/white crust/ooze occasionally, most recently intense tingling the past few months, almost like a buzzing feeling. Off and on itching. Some days it's oily, some sticky, some drier than the Sahara, other days looks normal even. Everyone told me this was expected healing process after RADs with the level of SEs I had. So I put it out of mind and chalked it up to "my body will just have to work itself out and eventually my nipple will do the same".
Not until I found this 1/2 a pea sized "lump" on my nipple did I really THINK about the symptoms I've been dealing with up until now. Now, since last week my nipple hurts often, even swells occasionally, and seems to be redder than my other as well as flatter. Plus of course the lump. (I also wonder if the timing of this new lump is related to my first Zoladex injection which has a rare percentage of causing tumor flares, but that's not here nor there right now.)
I'm scheduled to see my SO on 7/22 and I trust her. She is amazing. But I'd like to go into that appt knowing what I need to ask for in order to get this crossed off of my list so I can get some peace of mind, if possible.
From what I can gather, I should be asking for a punch biopsy?
Does anything I'm experiencing sound similar to your own journey in pre-dx? (from my reading it does, but I wanted to ask)
Is there anything else that I should be aware of or ask for?
I'm concerned that maybe, if this does turn out to be Pagets, I may have another IDC or DCIS somewhere in my breast. Am I correct in what I've read stating that there is a link there? Or because the already removed a cancer from my breast maybe that was the linked cancer?
Uggggh. So much to process. And of course the waiting game begins all over again.
Any help or suggestions would be appreciated. Thanks in advance everyone and again, thank you for having this thread. I really did learn a ton that helped me, maybe not put my mind at ease, but at least let me know I'm not crazy or imagining what's going on.
Jul 10, 2019 04:14PM lou23 wrote:
Hi, sorry to hear about the problems you are having.
Yes definitely you need a punch biopsy, it seems the only way to diognose Pagets.
I also had the tingerling and oozing nipple but I had no lump, I had no other cancer.
I wish you well
Jul 10, 2019 11:08PM Spoonie77 wrote:
Thanks Lou. I'm just really feeling overwhelmed. Trying to stay positive but the idea, even a slim one, that perhaps I will now be facing BMX after just going through a whole year of treatment, is daunting. :/ I really hope my SO has a cancellation so I can get in sooner than the 22nd. Waiting is just so awful.
Jul 11, 2019 12:57AM lou23 wrote:
I am keeping my fingers crossed for you, Pagets is quite rare so hopefully it won't be that.
The waiting is the worst part I think and unfortunately in the UK it can take 3/4 weeks for the results of your biopsy !!
Try to keep busy, and keep posting here , it does help talking to people who have been in the same position.
Jul 11, 2019 08:09PM Spoonie77 wrote:
Thanks Lou. Unfortunately, I'm the purple squirrel and the zebra and the unicorn...the rare things are my usual. :/ But hopefully not this time. I've been having/dealing with crippling anxiety since having found the lump on my nipple and being now referred to my SO. Was able to get in for a urgent appt to see my Psych today. She added an extra anti-anxiety med to my other anti-anxiety meds and anti-depressants. Hopefully that will help my mind stop running and finally sleep too. I see my SO has ordered a 3D Mammo & US for after our appt on 7/22, w/o me even having to ask. That's encouraging. But I will definitely be asking for that punch biopsy too, as I have read all the experiences here about scans being clear yet biopsy saying otherwise.
Aug 15, 2019 11:18PM - edited Aug 15, 2019 11:21PM by Spoonie77
Just wanted to pop back in and share a quick update, a lot has gone on since July.
Basically, after undergoing a Limited Breast US (clear), Chest CT (clear), a head/neck US (which revealed a thyroid nodule and have to see a Endocrinologist in Oct for follow-up and a biopsy if the nodule grows), being evaluated by 4 different members of my team, plus seeing an Immunologist, and various labs being run (RBC and Abso Eosinphils elevated) the basic idea is that I'm dealing with a number of new issues, none of them are Paget's. Whew.
One, turns out I was allergic to Zoladex, which preceded the appearance of my new lump & new symptoms. Who knew that was possible! This allergy was the reason my nipple had new swelling, redness, extreme pain, and the lump to appear. This allergy eventually caused my neck to swell (great Hulk look-alike), hence some of the extra testing and being sent to Immunology. I may have something called Acquired Angioedema, thanks to the Zoladex. Time will tell.
Two, I also was dxd with Nipple Lymphedema, and nipple cording, which contributed to the extreme dagger-like pain, and the tilting/flattening of my nipple. I was so relieved to hear this news from my Cancer Rehab doc!
Three, even though my MO declined to do a punch biopsy, saying it was unnecessary, while my Cancer Rehab doc said I had every right to have one if I was going to stress over it. I decided to give my PT a chance to work and see what came of it. So far much has improved, especially the pain, although I still have a good portion of flaking, scaling, and fluid that comes and goes on my nipple. I'm okay with waiting a few months to see if what my MO says is true, that this really can/is still from RADs even though that ended in Oct. If there comes a time where I'm losing sleep over it again, I will be asking for that punch biopsy to cross it off the list.
Four, I think since my Breast MRI is coming up in OCT that's part of the reason I'm ok with waiting a bit longer. It seems like from what I've read that MRI has the best chance of any imaging to show Paget's.
Anyway, that's the update. Clear for now. Still waiting for other answers, but am thankful for the answers I did get and the peace of mind they've given me in teh meantime. Hopefully this might help someone else down the road, to say it's possible that there can be other reasons for symptoms that sound and act like Pagets.
Thanks again all for having shared your stories and journeys. It definitely helped me know what to ask for and to know what to look out for in the months and years ahead.
Wishing everyone peace and healing.
Aug 28, 2019 12:38PM vturner1650 wrote:
I recently had a punch biopsy done at the dermatologist office last week. I've had discoloration on both breast that started back in April, pain, Itching, and now a small amount of flaking skin on my left nipple. They told me that they wanted to check me for Pagets, but took two samples of skin near the areola and nipple but not actually touching. I thought to test for Pagets you had to take samples of the nipple or areola? So I guess my question is, has anyone had a skin biopsy for Pagets that they didn’t take from the nipple/areola?
Aug 28, 2019 03:17PM MBPooch wrote:
Hi vturner1650 -
Did the punch biopsy get any of the flaky/itchy area at all?