Paget's Disease of the Breast
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Danielle, glad everything is going well. I have my 6 month checkup on March 20th. Will keep you posted, and hope to hear from you after yours.
It has been a brutally cold winter. I've had a lot of trouble dealing with the cold this year.
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Will watch for your post glennie! I will post after mine too - stay warm - only a couple more months left and hopefully warmer weather!
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I am 37 and have had to get mammograms and ultrasounds every 6 months for the last 3 years as they come back saying probably benign, which I do not pay them any mind because I know that means nothing. My left nipple has been an issue for 5 years!! It has been itchy in the worst way, but I was more concerned bc of vain reasons, as I am scratching like CRAZY! It is very embarrassing. I blew it off for a year until it started getting very scaly, burning and so sensitive. My problem is this: I went to my gyno who gave me to creams (mind you I thought the itch might go away with rubbing alcohol, neosporin, Vaseline, lotion, OTC anti itch cream and lotions and used all the above)! Gyno creams didn't work. My primary care gave me a cream. None of the above has worked so after more cream my gyno referred me to a dermatologist who said its not a dermatological issue, but gave me 2 creams as a departing gift... Didn't work. Gyno then sent me to a breast specialist who said she was 100% sure if I covered my breast while tanning and used primrose oil with OTC lotion it would stop. Again didnt work, although she assured me to the extent of 100%. Spent a year not tanning. Lost faith but the itching and scaling were INTENSE so I changed gynos who gave more cream.. I bet you can guess.. Right ..didnt work. She referred me to a surgeon who said there's nothing to biopsy, so by this time I am over doctors. The only thing in this world I want is for this itching and scaling to stop. But I left it alone for another year by this point it's right at 5 years. I had spent 3 years from doctor to doctor with no relief. My pcp left the practice and I didn't care for the new doc and found the most amazing NP who said do not ever give up on your health and although she gave me cream (LOL) she also got me motivated once again to care. I've had my mammo, showing the same as always and I went for an MRI and thank the good lord it was normal. I go Monday for a biopsy because now along with itching and scaling I noticed as I was undressing at the gym I had large yellow areas of discharge streaked with blood. I get large blood spots and my nipple is sticky and gross when I scratch it. I am a little worried but I keep thinking I can't have Padgets it's me there's NO way. Deep down I known better it can happen to anyone. Up until now no cream lotion or anything has work to help. Also, my nipple isn't introverted it sticks out ALL the time and that's not a symptom! But I will hopefully get great news from the biopsy Monday and thank you all for reading and all the info you provide. You are all amazing women for fighting and winning!! You ladies are true heros!
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Wrenn everyone has opinions I guess but my story was similar to other experiences on here so I shared. I did not make my post looking for negative opinions. I will not get back on here and deleted my post but since we are giving our personal opinions here is mine... you like like a very elderly lady so you probably do not understand tanning even without the worry of cancer.
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Hi Glennie. Thank so much for your concern.
Follow up Ultrasound done today. But before I elaborate on that, I should say that I have another health issue that has come up. I have had extreme pain in my left ovary the last two weeks, some bloating and pain in my upper stomach to the left of belly button every time I eat, so a CT scan was do and it revealed a small (less than 3 cm) simple ovarian cyst on my left ovary. My Doc sent me to a GP for consult (seen him yesterday). He says "Let's wait 2 months and see. If it is problematic and continues to cause extreme pain over the course of the 2 months, we can remove the left ovary." I said if it starts attacking like it did Saturday, it is crippling and I cannot wait. The pain was so bad my husband had to help me limp to the car. He said "okay, be sure to document the pain and call me if you want to have the surgery." Since I was there to consult about the ovary cyst, I also brought the problem with my left areola pain, redness and swelling to his attention. I told him since the time that my primary MD ordered the first breast Ultrasound in Jan, and after taking and finishing the Cephalexin she prescribed for me on 1/31/14 for 10 days, the swelling and redness subsided on about day number five of taking the meds, but now it is back and seems more sore than before. He looked at the nipple and areola and then squeezed to see if any fluid came out. Then, he pinched together the areola skin over the affected red area so as to size up the lump and said "how long has this been here?" I told him because my breasts are full of cysts, I have no idea how long. He said "this has got to go. Make sure I get a report of the Ultrasound being done tomorrow." I told him I would have the radiologist be sure to include him in addition to my primary (who initially sent me). Todays ultrasound showed no change compared to the area of concern on the last film, so Radiologist says he's going to tell Doc to refer me to a breast surgeon for a surgical biopsy to remove the lump for testing. He said some previous cysts were not seen, but there are new ones to replace them. So now I wait to have biopsy and results.
Does anyone know how bad an excision to remove a lump from the areola is......I am wondering how bad it is to have a local as oppose to being put to sleep....can anyone answer that? I cannot stand the thought of having a something removed from under the areola. Very sensitive area....
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glennie, yes it is! My oncologist did have the final word and said no further treatment is needed. What a relief. I had a DIEP flap 5 weeks ago and definitely didn't want to compromise it after all I'd been through.
Renee, did you end up having a biopsy? How are things?
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jmb - No biopsy yet. The GP was not in yesterday, so the nurse has yesterdays ultrasound report waiting for him to view when he comes in today. He is going to get me set up with a breast surgeon an get back to me. I do not want to make any false calls, but I'm scared that I too have Paget's. Just beneath the reddened area on the areola where the growth is, there is a teeny tiny blister looking thing that appears intermittently. I can see a little yellow pus spot on it, but it is flush with the skin of the areola and it is so faint. It is really strange how one minute you see it, and the next it's gone.
I'm so sorry for all you have been through. It just breaks my heart to hear the different stories on here about having been through what you all have been through. I keep thinking that I am not strong enough to get through any of this, but I guess we surprise ourselves sometimes.
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Renee, I wish I could give you some info on Paget's, but I had no symptoms at all. My oncologist said it was caught really early so I had no symptoms and there was no cancer in the breast. Had it not been for the cancer in the other breast and removing the nipples, I might not have caught it for a long time.
I hope this turns out to be some weird rash or eczema, but if it's not, you'll get through it. It might suck at times, but you'll get through it. My faith has helped me a lot.
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Thanks, jmb. I hope it is just some sort of non-life threatening skin or milk duct infection. I am so happy that I found this site because there is not a whole lot of real life patient experience with symptoms and reviews for Pagets of the Breast.
On occasion I get pin prick feelings that feel as if somebody is sticking me under the areola with a needle. I screamed at the first ultrasound because it felt like the technician stuck me with a needle on the sore red areola spot. She was simply getting ready to remove the marker from the mammogram that had just been done.
Today it is more red and swollen than ever before. I have no bra on and even my pajama top hurts when it rubs the nipple. To date, I have not experienced any of the hallmark itchy or flaking skin that can be related to Pagets.
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the local will numb it up, but you will feel the needles as they inject the numbing agent, so that part is not pleasant. They probably wont want to knock you out for "such a minor procedure". ( sarcasm)
Hang in there, Renee and keep us posted. Hoping that it is just some weird thing and NOT Paget's.
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Glennie - Can always use a little sarcasm to make light of things :-)
My GP called and says he has me set up with the breast surgeon for a consult on March 11th. He is also going to get an anitiotic for me to pick up later today just to help the swelling in the mean time. Said that they will most likely knock me out if I prefer, as they may want to get as much of the growth area out as possible. I do not have the strongest stomach lately, so probably would be best. Again, the waiting is the worst part. Once I find out what's what, I'm going to ask my husband to take a drive down South to see his 90 year old Mom and take me to play 18 holes of golf while we're there.
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Numbing for the punch biopsy was not bad at all, nor was numbing for the core biopsy.
What was worse was numbing right before surgery to place a wire (guided by MRI) to make sure the surgery resected everything the surgeon wanted to take out. The injections of lydocaine were beneath my areola. The first few weren't bad. I was at Dana Farber, and the person doing them was a medical student or intern or something I can't quite remember. She explained that it was her experience that the slower the injections are made, the less it burns. She was certainly right. Although it was a *very* sensitive area, only a couple of them really burned.
For the surgeries (partial mx and later SLNB), I had sedation and local anesthetic only. I really didn't want general anesthesia if I could avoid it. The surgeon was concerned that the procedures might be too physically traumatic, but the anesthetist assured me that, should I appear to be in discomfort, that I could be placed under general anesthesia after surgery started. It wasn't needed in either case.
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Bet you are glad your surgery is over. I am scheduled for conservative lumpectomy for my Paget's in a couple of weeks and still have to have a core biopsy this week. Sounds like this biopsy wasn't bad at all. That's good news.I am anxious about the surgery to remove the areola and nipple and since there is an underlying tumor, that will be removed also. Wondering if reconstruction will be necessary as I feel this is a lot of tissue being removed and I am not a large breasted person. Any advice is really welcome!
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I'm a B cup. My surgeon said she took about 1/3 of my breast. I did not have reconstruction. I stressed to my surgeon that I absolutely did not want reconstruction and expressed concern that the scar be neat. I have been told, by friends intimate enough to stare at my chest from different angles and close enough to tell me the harshest of truths that they really can't tell a difference. I haven't been wearing a bra again yet. Instead, I've been wearing thin cotton tanks under my clothes. I imagine it would be even less noticeable with a bra.
The biopsy was not bad, but you may want to be extra gentle with your breasts in the several days after the procedure. I was told I shouldn't run for a week, not even with a very tight sports bra. I found that icing and acetominophen were all I needed to cope.
Good luck!
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Glad to find this thread. I was drying off after getting out of the shower an noticed my left nipple was a bit "crusty" for lack of a better term. This has happened before and doctors never thought it looked suspicious. After having DCIS on the same breast last year, I am being followed regularly by so many doctors so I am thinking I should have my MO take a look at it when I see her on Tues for a checkup as I am taking an AI.
I am now concerned that I might have Pagets. I had rads last year and have had two lumpectomies (one re-do for a close margin) and so I am thinking it is unlikely they missed anything since I see a BS AND an RO and an MO?
I have also had a mammo (3-D) last August and so is it possible they missed this with all of this constant attention on my left breast? Should I worry? Could it be eczema or something like that?
I already had rads so that is no longer an option for tx for me and mx would be likely. Ugh...does this stuff ever end?
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Yes, it could be eczema. Or a yeast infection or many other things. When I was going through getting diagnosed, I was told by 2 doctors that there are several things a dry, crusty, itchy nipple/areola could be. Paget's is very much less likely, statistically, than some of those things. That said, that doesn't mean it isn't Paget's. I'd guess that your MO would be more likely to recommend a punch biopsy to rule out Paget's, rather than messing around with prescribing different antifungal or steroid creams to see if those would clear it up.
The punch biopsy was the sole indicator of my breast cancer. My mammo & ultrasound were both clean. Based on my experience - and keep in mind this is the anecdotal evidence of one person - I'd say that yes, it could have been missed.
However unfortunate the reasons, you're in a good position to be diagnosed quickly. I hope you get an answer, and soon. Meanwhile, I'm sorry you're having to go through all of this stress again.
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Hi April. I agree with CassDugan. It very well may be eczema. However, Paget's would be rare possibility. I, too, was diagnosed with DCIS and when I went in for the lumpectomy I asked them to please take a punch biopsy of my nipple as I had addressed concerns of flaking, itching, burning, etc. No one thought it was Paget's by the way it looked. I, however, knew it was very different from my normal and I wanted to know for sure. The surgeon agreed to do the test when I was out for the lumpectomy. My surgeon said all of the tissue removed was dcis, but I did have Paget's in the left nipple. I then had a bmx 3 weeks later. Mammogram, breast mri, leading doctors and breast health nurses missed the Paget's, but the only way to be sure is the punch test. Amazingly, after my bmx, it was determined that the residual Paget's cells were very hard to find because they think 99.9% were removed by the punch test. Of course the .1% that were left were too many, but the bmx definitely took care of that! Remember to be an advocate for yourself! Also remember that Paget's is very rare and thankfully when not accompanied by an invasive form of breast cancer, the prognosis is excellent and is considered stage 0. Good luck and sending you many hugs and well wishes!
xo Danielle
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Thanks so much for responding Cass and Danielle! When I go to my MO appointment this Tuesday, I will most definitely ask the MO to take a look at it and if she does not think I should have a punch biopsy, I will insist on one for my peace of mind. I just get a feeling (just like I did with my DCIS when they put me on watch and wait 6 months prior to diagnosis) that this is something and not just a yeast infection or something easy peasy. I don't have a reason for feeling that way mind you...just a hunch that may or may not be right. I have had a lot of stress in my life for the last 5 years or so and honestly, I believe the manifestation is wacky things happening in my body. Hoping I am totally wrong this time.
Thanks again to both of you and hoping you are both doing well! xo
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A punch biopsy isn't at all bad, at least mine wasn't. The doctor will do a few injections of lidocaine or some other local, which hurts more than the procedure. My doc closed it with a stitch but it's a small enough wound that wasn't really necessary. A waterproof bandaid over it for the next several days, with regular cleaning. A week later the stitch was out and you'd never have been able to tell that it had been done.
I meant to say, I too had a hunch that something wasn't right. In retrospect I wish I'd been more insistent about getting it biopsied earlier in the process.
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Hi,
My name is Kylie and I'm 38yrs old. I've just been diagnosed with Paget's disease of the nipple and high grade DCIS. Also suspicious lymph node showing activity. I have no breast cancer in my family history.
I only found out I have the above conditions as I was having difficulty feeding our newborn baby girl as my nipple and milk supply wasn't normal.
We have two other daughters aged 2 & 5 which I breastfeed successfully so my gut feeling was something was definitely wrong.
I was shocked to find out via a punch biopsy by a dermatologist that I had Paget's as were my GP, lactation consultants, OBYN etc. after exhausting antibiotics, cortisone creams, natural therapies, reduced feeding on my R side over a 3 month period.
This has absolutely rocked our world with our young family.
So far we have done ultrasounds, MRI's, biopsy of the lymph glands, full body & bone scans plus the removal of my R nipple and half the breast.
The original ultrasound and MRI only picked up imaging of the Paget's and missed the DCIS 8mm.
I'm struggling to find out information about Paget's especially for my age group and what other women have done as their next step.
One surgeon we have consulted highly recommends the 'wait and see' regarding possible return of DCIS on either breast (or Paget's on L) with yearly imaging check ups and 3 monthly ultrasounds on lymph whereas another surgeon strongly recommends preventative measures to avoid possible return with a dbl mastectomy and reconstruction.
Any advice would be greatly appreciated.
Thanks, Kylie
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Hi Kylie.
I was 42 when I was diagnosed with DCIS and Paget's disease (I am 43 now, but I am CURED). So our stories are very similar. ): But...I would be more than happy to offer any insight. You can PM me, or search my posts by searching under user name 'hoping 42'. Take care!!! Sending you lots of hugs and positive thoughts
April485--Thinking of you, too!
CassDugan--Thinking of you too, girl!
xo Danielle
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Kylie, neither my MRI nor my ultrasound picked up the Paget's or DCIS, or even the very small IDC that was discovered in the tissue resected to remove the Paget's.
Everyone is different. I prefer to be treated more conservatively. I was advised by one SO at one facility that a partial mastectomy (bigger than a lumpectomy but not the whole breast) + rads + Tamo should yield excellent results, in terms of survivability. Another SO at another facility advised a mastectomy + axillary lymph node dissection. At the time of surgery, we had no idea that the IDC laid underneath. I opted for the partial mx because I didn't see the point to more traumatic surgery removing healthy tissue, which might increase my risks of side effects like lymphedema, especially when no other problems were known. Once we knew about the IDC, I had a sentinel lymph node biopsy. The node removed was negative. Again, I wonder why the other SO pushed for a more extreme surgery to remove all of them, and that was before we even knew about the IDC, when in fact the SLNB was negative. As for reconstruction, whatever other questions I had, I always knew my answer to this was a resounding and positive NO! It's been about 10 months and I am happy with my choices thus far.
You have my sympathies. I can't imagine going through this as a mom, especially one who breast feeds.
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hi girls,
Thank you so much for replying.
It's really nice to know even on the other side of the world there are strong positive happy women surviving and at peace with decisions they have made after shocking diagnoses.
Agree it's been mind blowing to firstly be diagnosed with a rare cancer plus have DCIS and understand what it all means with limited information known.
All the medical professionals / surgeons I've spoken too over the 5 weeks have either had no experience or 1 or 2 cases of Paget's presented before them over the last 20+ yrs. those cases both with women aged 70+. It's a shame both options seem extreme and unpleasant.
Having to immediately stop breast feeding my daughter the day I saw my 1st surgeon ripped my heart out. The enormity of it all was so overwhelming and I don't think I've slept trouble free since.
In regards to how I personally feel about keeping or losing my breasts is difficult.
I nurtured and fed our eldest 2 daughters beautifully and luckily had 3 months with our baby girl that's what my breasts were meant to do.
Losing them however in a way is ok they have served their purpose and if it means I no longer have to stress, worry or ever have to have that discussion "if only I removed them at the beginning" then as scary as BMX is with a TE is I think I am strong enough to get through it.
Thanks again, Kylie
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Had my appointment with MO yesterday who took a look at my nipple and told me she felt there was nothing there. She did a thorough breast exam and did not feel anything out of the ordinary either. My "crusty" nipple now is pink and healthy looking but last Friday, had a scab on the tip. Now there is nothing there (of course, it figures that it would fall off leaving a pristine looking nipple behind it) so she did not feel that I should have a biopsy at this time. She did say that if it happens again to call my breast surgeon and tell her so I can see her and let her decide if a punch biopsy is in order. Thanks so much for your support! Prayers for all of you. xo
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Hello ladies, looking for some information. Yet again... Been going down this breast cancer road for a couple months and thought I was seeing the end of the road. Not so much.
Long story short my left breast has been causing me problems and after biopsies, incisions and lumpectomies I was diagnosed with LCIS with necrosis and Atypical Ductal Hyperplasia in another part. Ok put me on the watch list. Well fast forward about a month and I wake up to my right nipple looking very odd and having some drainage. I have never had anything wrong with this breast. I guess now that I think of it the nipple has been looking a little different than the left but nothing like what it does now. I find it hard to explain what it looks like besides not right. Areola and nipple. So anyway I called my oncologist, his nurse told me to put some lotion on it. Told her I don't think lotion will help this. She is 3 hours away and I didn't feel like making the drive and asked if I could send a pic. Due to the fact that I felt like she was dismissing me. She looked at the pic and sent me to a dermatologist in my town for a pagets test. Also scheduled me for a diagnostic mam. and a ultrasound of that breast.
She says she cant believe how fast this happened. So my questions to you all is, has anyone else experienced something similar right after a different diagnosis? And my other concern is that they upped my estrogen, I am in surgical menopause, and I am wondering if this could be what caused this to spread?? By the way I am 35.
I am fustrated and ready to cut these girls off for good!!
Thanks!!
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I am in need of some information on Pagets I have had burning tingling and itching of one nipple since November 13. Since jan 14 I have had crusty rash with clear some blood discharge. I went to Dr he saw red blood cells in breast discharge and sent me to breast surgeon... Breast surgeon said "I don't mean to be cocky but why are you here? " He said it is an allergic reaction AND go see a dermatologist. He did offer a diagnostic mam with us. The results of us state that there is thickening of areola and inflammatory changes and to have further testing to rule out Pagets. ... had anyone had results of ultrasound with this?? I see dermatologist in a week.
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Hi April, Maisy and Smitty
April-Remember that there are many reasons that could have been causing those irritating changes on your nipple. "They" say that Paget's doesn't get better on its own. It is a very good possibility that there is a skin condition going on given that it cleared so nicely. (: {I did try cortisone cream on my nipple per advice of my gynocologist (phone call-clear annual exam in August-called November--they said to try cortisone cream and to follow up if it did not improve, I thought it was improving until I received that DCIS dx in January at annual mammogram-Paget's dx in February folowing that punch test) and it did get "better"--but not like it was back to 'normal'. I had what I would call a cracked look to it (just the tip of my nipple), a slight flattening of the nipple, burning and tingling and a very slight straw colored discharge once in awhile that was seen on the inside of my bra. So even with the corisone cream and slignt improvement, the flattening was still there and the L nipple continued to look redder than the R.} However, you know your body best. Be an advocate for yourself, remain diligent and observant. Do call your doctor if you notice anything and I think it is great that she made it very clear to call her and not to dismiss your worry and concern because it is validated! I continue to wish you the best!!!!!!!!!!!! AND thank you for your kind words and well wishes in return!
Maisy-I did not see a dermatologist, but think that it is a prudent decision to see one since it is the follow up that is being recommended at this time. A dermatologist's expertise is dealing with issues of the skin, which Paget's involves (and then some or not). Be forthcoming with your concerns, as I can tell in your post you will. Peace of mind is worth a whole bunch. If doing further testing allows for that, then it is definitely worth it. If, unfortunately, further testing indicates Paget's then a group of professionals can start working on how best to address now to lead to recovery vs. later. As I have told others, and have to remind myself, we know ourselves best. Medical professionals take an oath to do what is right by their patients! Best of luck to you!!!!!!!!!!!!!!!!!!!!
Smitty- Paget's was not indicated on any testing that I had done. It is an unfortunate fact that current screening tools often miss this dx. It is also true that it is a very different presentation and is "rare". I do understand your feeling of getting rid of them for good. Each person is different. Our feelings, coping mechanisms, emotional and physical differences/views, etc. can lead each person to a different understanding of what path you want to take if you must. I came to my decision fairly easily after the lumpectomy surgery found this. I felt that losing my breasts caused me to gain a much greater thing- peace of mind. Many factors played into my decision of "just get rid of them" including a pmx on the Right side--- mom's breast cancer (survivor), emotional state, etc. etc. Just as others may feel that other factors cause them to think the exact opposite. No one is "right". Just right for them. To others it may not make any sense to want to jump to one decision over another, and at the same time, be the only way for others. Wishing for quick, healthy answers for you!!!!!!!!!!!!!!***I see you are in Nebraska, too! Go Big Red and Go Creighton--March Madness (small, but nice normalcy)
xo Danielle
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hi girls,
It's seems to me that not many medical professionals have knowledge, experience or understanding of Paget's at all.
My symptoms looked a lot like a localised dermatitis however my nipple looked quite damaged as well as I was trying to breastfeed a newborn so quite possibly overshadowed it.
I tried everything to try to help heal nothing worked but my gut kept telling me something was wrong and to keep challenging each option until I had a solution. Even the dermatologist was shocked with my diagnosis at age 38 she definitely didn't feel it was a serious condition when first consulting me and I had to press hard for a punch biopsy.
It wasn't the most pleasant experience but I needed to have some peace of mind and thankfully I did. Even after diagnosis confirmed Paget's a follow up ultrasound and MRI missed it with my breast surgeon. It wasn't until he removed the nipple and half the breast that pathology re-confirmed Paget's and also found high grade DCIS (also missed on U/S & MRI ).
I truly hope you continue to exhaust all options and it turns out to be all ok.
Good luck !
Kylie
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Thanks for the response girls. Nice to not feel so alone in all of this. I have not told anyone about this biopsy. I am sick of explaining things that I don't understand myself! They told me the results of the pagets biopsy will take 10 days to 2 weeks! Seems crazy to me that they make you wait so long. Wonder if they would have to wait that long??
I am feeling pissed off lately. I know things could be so much worse but after the long road with my other health problems and the complete hystorectomy I was finally feeling like I was getting my life back! Than bam! Now it seems like all I do is have biopsies and wait for results. I am always the one lecturing my friends about looking on the bright side and living each day to the fullest. And now here I am having a pity party that I cant seem to snap out of. I cant barely stand to be in the same room as my husband. I dont know if it is the menopause or the boobs! lol
Anyway, thanks again for the kind words and I hope you are all feeling well and enjoying some sunshine
Danielle are you from Nebraska?? GO HUSKERS
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Hi Smitty--Yes, I am. I live in a suburb of Omaha. Take care!
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