What is Paget’s Disease?
Guest Blogger, Sarah Mendoza
My thanks to Sarah Mendoza for today’s guest post. In September 2009 Sarah was diagnosed with Paget’s and wide spread high grade ductal carcinoma in situ (DCIS). Her blog, The Breast Cancer Lottery, is a journal style account of her journey with breast cancer, reconstruction and life. In today’s post, Sarah explains what Paget’s is and what signs to look out for, particularly important as it is a less common type of breast cancer and therefore often misdiagnosed.
Hi my name is Sarah and I have been asked to talk about my Paget’s and what Paget’s is. Paget’s is a type of breast cancer or a warning sign that something more sinister is growing within the ducts to the nipple. A lot of the time when a woman complains of nipple irritation it turns out to be nothing. Even with my own visit to my general practitioner lead to me to swallowing antibiotics for mastitis first. It is a rare cancer, but treatable if caught in time.
What were my symptoms?
Itching, Soreness, Lesions and Weeping of the nipple.
When I first visited my GP January 2009 I was told nothing was wrong. It was eight months later when I was finally diagnosed with two conditions of the breast. These were Paget’s and wide spread high grade DCIS. Both conditions had been caught at a pre-cancerous stage. My first symptom I would say was down to instinct. I knew something was not right even though my nipple looked perfectly fine at that time. My nipple had an itchy tingly sensation and I would rub it constantly. I’d be stood in a queue with people all around me and I would be gritting my teeth to have a good rub. Believe it or not you can clear a queue of people when you start to itch your nipple.
Then in February 2009 I went on holiday and I developed a sore spot on the tip of my nipple. It was raw and weeping so my instinct said try antiseptic cream. I applied the cream on a piece of cotton wool and place it on the tip of my nipple, but when I took my bra off it would wrench the cotton wool off and the scab that had formed. So my next trial was to use a cream for cracked nipple and I tried this for a few months alternating between the two creams. I went back to my GP July 2009 and he started me on a course of antibiotics. It was already common practice for me to have regular bloods taken because I am a type two diabetic. So I had the full set of bloods taken and told to return in two weeks time.
What are you looking for?
Most doctors misdiagnose Paget’s because it has similarities to cracked nipple or eczema. Even I thought I had a reaction maybe to detergent or the water whilst away. It is a common mistake made and that is why it is a rare cancer. On my diagnosis I was used for an example so students could see what Paget’s looked like.
I was lucky that my cancer had remained in situ and was caught at a pre-cancerous stage. A tumour 6cm was growing laterally down my duct which was HER+++. If I had left it more than six months my story could have been different. If it wasn’t for the Paget’s I would of been sent away and told there was nothing wrong with my breast. On October 16th 2009 I lost my entire breast and had a LD reconstruction done the same day, but I am here to tell my tale and you are able read it.
My advice for any breast complaint would be; if in doubt go to your doctors and if you are not happy seek a second opinion. It is only your vigilance that can lead to your diagnosis.
I had never heard of Paget’s either until my post-mastectomy pathology showed it — in my “good” breast. Nothing had showed up on my left breast in any of the scans or tests before the mastectomy. So glad I opted for the bilateral, or I’d have been right back in the OR. Thanks, Sarah, for sharing your story. So glad you’re alive & well!
I am glad you are here too pinkunderbelly.. There are many things unspoken about breast cancer. When you start your journey of understanding no-one prepares you for what is revealed from the dark musty curtain of BC. When I was first informed I had an issue with my breast they used the word calcification. I personally had never heard of calcification within breast tissue, but I also did not know the varying types of BC either. It was only until I typed calcification into the search engine that pandora’s box was opened.
I think there should be more information on what women should be searching for in BC. That it is not just lumps, but other subtle changes within the breast. Women are confused and men the information is to specific on one type, not the rarer types of breast cancer.
Sarah Mendoza
Sarah,
Thank you for such an informative posting. I never heard of this condition, as well. I’m glad you are doing well.
Hi Beth,
You are more than welcome if it helps anyone that is out there it is a positive for this post. It was a pleasure to do a guest posting for Marie on Paget’s.
Don’t be fooled and please be PROACTIVE on any questionable symptoms…my mom had the rarest of Paget’s…NOT located on the breast, but on the perianal area. It was overlooked for a year, treated with anti-fungal cream, later discovered and cut away, but again, later discovered to have metastized to lymph nodes in groin. She went through chemo and radiation, but found it had spread through body. She died 9 months after diagnosis of the metastisis – I know I’ve mispelled this. But, now only wonder what we could have done differently. Don’t hesitate to insist on more tests and please consider diet changes to help your body become/stay healthy.
I am so very sorry to hear about your mother’s death and am very grateful that you have left this comment for readers to be aware of the signs. Thank you!
I’m sorry to hear about your mom,
Yes there are different types of Paget’s which have been named after the person who discovered them…
‘Paget’s disease of the nipple was named after Sir James Paget, a scientist who noted an association between changes in the appearance of the nipple and underlying breast cancer (1, 5). There are several other unrelated diseases named after Paget, including Paget’s disease of the bone and Paget’s disease of the vulva; this fact sheet discusses only Paget’s disease of the nipple.’
quoted from article below
http://www.medicinenet.com/pagets_disease_of_the_nipple/article.htm
I think the main advice out there with any experience of cancer is be body aware..
We rarely hear about Padget’s so this is very appreciated. It’s maddening how often WE instinctually know something’s not right with our bodies, but we have to fight the medical community for help finding proof. I had to do that as well. Thank you for the post.
Hi BreastCancerSisterhood.com,
A few people I have spoken to have said the same thing. When Marie contacted me to do the guest post she had mentioned that Paget’s had never been mentioned on her blog before ie the guest post, but with the opening of blog communities and FB it is bringing the rare cancers within the public domain so they are spoken about.
Sarah,
Thank you so much for this enlightening post! Awareness of the possibility of a rare disease is at least half the battle. I had heard of Paget’s disease, but didn’t know much about it until I read your detailed explanation of the symptoms and treatment. Since I suffer from ezcema, if I had had the tickling sensation, I probably would have attributed it to allergies and chafing. I love your advice at the end; wish everyone would adhere to it.
I’m so glad you caught your cancer early. Your message might just save a life!
XOXOXO,
Jan
Hi, Jan
I’m glad you found this post imformative. Breast cancer’s of any kind rare or common have question marks, especially when we are not certain of what we are looking for. It was only my vigilance like many other BC suffers that saved my life.
Thanks once again Sarah for sharing this great information with readers – it was a pleasure to have you as a guest blogger this week.
This is so helpful – thanks for highlighting the lesser known sides of the breast cancer beast. I was surprised to learn that I had Paget’s, after my surgery. Information and vigilance are critical. Thanks P
Your welcome feistybluegecko… I do enjoy reading your blog.. At the end of the day the more we talk about breast cancer the better I think. Sharing our stories highlights the true nature of BC. BC does not fit into one catergory there are many BC types out there.
Marie it has been my pleasure xx
Thank you for this post that explains Paget’s. I had heard of it, but that’s about it. I think your advice is so important. If you feel something is wrong, keep pushing. Keep at it until you find someone who will truly listen to you. Women do know their own bodies best. Thanks again for sharing this information, Sarah.
You’re welcome nancyspoint
Thank you for sharing—I had exactly the same symptoms, but my doctors always suspected Paget’s. Just diagnosed June 29, 2011. Mammogram and ultrasound show no lump, getting an MRI next and afraid of what it will show
then afraid of what comes next. i come from a big family (11 children) with absolutely no cancer in history. Besides being worried about cancer worried about cost of treatment, will loose my insurance in 2 weeks.
Hi Lucky22,
I am so sorry to hear about all what you are going through. I presume you are not in the UK because you mention insurance running out in your post. I have heard many similar stories about the worry of paying for treatment and covering costs there after. The only advice I can offer is check out other blogs. I know a few young women who have blogs on my page maybe they can give you the right advice to ease your stress. Sending lots of hugs your way Sarah M xxx
Hi, my name is Flo. I had a clean mammogram AND MRI a month ago, both done because my nipple was seeping blood. This is the breast that I had cancer in- in 2002. Both tests came out normal. My sister sent me an email about Pagets disease & I contacted my Oncologist, who referred me to a surgeon.
Long story short, I just heard an hr. ago that it came back Pagets disease.
You’re absolutely right, we have to be proactive when we feel something is not right.
I’m so happy that you are a success story. Take care, Sarah
Hi Florence,
I’m so pleased your sister was there to help you and give you the support/advice you needed. Your story is very common amongst women I know with BC. Some have gone got checked and been sent away only to return and find out the first diagnoses was incorrect. There is a lot that the medical establishment do not know about BC and they’re reliance on mammograms/ultrasounds/MRI have lead to theses error’s in my opinion, but theses machines are still in their infancy.They do not pick up everything and that is why we must be pro active with our bodies.
If you believe something is wrong then you must shout. You and you alone know your own body and you must make them aware of the subtle changes you are aware of.
Recently I went to my Onc appointment only to be seen by a total stranger. I mentioned my right breast and changes I had become aware of and he brushed them off, but it is down to me to be on their case just incase my cancer has returned. Having my blog is a diary and I can fall back on it because I am discussing openly about my life and BC. Friends are able to say you know what Sarah I think you need a second opinion which has happened.
Friends and family are so important through our journey with BC. In 8/10 cases they are the ones that spur us into action to get seen.
I hope your treatment goes well Florence..
Sending a big positive hug.. x
Hello,
i am 21 and found something odd on my nipple. It has only been two days, but I noticed when I put on my shirt, i felt a little pinch on my nipple. As I lifted my shirt, I found a tiny piece of skin protruding out from my nipple and a little lighter in color. The following morning i found that it started turning a little darker (as if the skin was dead), the same shade as my nipple. The skin has been cracking around it and does not hurt unless touched/put pressure on the nipple. The nipple becomes a little red if I touch it. There are no flakes/scaly skin its just right at the tip of my nipple a piece of skin is hanging out. It does not itch. That piece of skin fell off right after i took a shower tonight and appears cracked, but nothing else… Now it just looks scarred. I put lotion on it and i guess it seemed to help. Can someone help me find out what it is.. I afraid that it may be Paget’s
Thanks in advance.
Thanks for contacting us. I would urge you to seek advice from your doctor, as I am not qualified to offer medical advice.
I agree with Marie.. If in doubt always seek medical advice… As bloggers all we can do is make you aware of the types of breast cancer and symptoms to look out for.. xx
In 2007 I noticed drastic change in right breast. It was bleedig.weeping and itcy. I immediayely negan researcing online and idenified it as p.d.i went yo see a spcialist who said it was excrma.no biopsy was offered.it continied to weep then 2yr later I took myself off to a uk leadimg specialist who said its most likely excema.please ladies and gentlemen insist on a biopsy and do not listen to their diagnoso.i have now been finally diagnosed with p.d and anothet imvasive breast camcer.ot is now october 2011.i will undergo a ct scan tomorrow amd masectomy am not expecting a great prognosis even though I feel tje doctor is playing ot dowm for now.sprry fpr errors I am om a small phone.
Sorry to hear it took so long Leigh, I was not at first diagnosed with Pagets eitrher. My condition was treated as mastitus, so yes you must be direct if you feel the diagnosis you received does not feel right. Currently I have issues with my right breast which has been on going for some time now. But like I said to my team of specialists at least I’m pro active. It is a shame when certain GP’s or oncologists let you down. It does affect the trust between patient and doctor.
big hug your way Sarah M xx
Getting up to date info has been difficult for me. Most articles are date several years back. This is wonderful to read all the different reactions. I am scheduled for surgery the 24th of the month, after having had Pagets, I know realize, for 3 years and thinking it was a “skin” condition.
Betty in California
Hi Betty, thanks for stopping by and leaving a comment on this much understood condition.
Hi Sarah,
I’m glad I got to read your post. I am a 34 year old single mother of three children and for a long time I have had an itchy left nipple I could be having a conversation with a friend or family and would have to dash to the toilet just to scratch. A growth has formed from my nipple to my areola and my breast would often leak fluid.
It wasnt until last Saturday night whild applying false tan that I noticed the the lump had gotten bigger.(I orginally thought it was a blocked glad)On Monday headed straight to my family doctor as soon as the office had opened. As soon as I told my doctor she got very angry that I hadnt come sooner, at this stage I still didnt think it was serious. The doctor said it is most likely Paget’s and gave me a letter for referral to the hospital.
I dropped the letter off at the hospital and was told by the specialist receptionist to expect an appointment in about 4-6 weeks. I was happy enough with that and went about my day, met a friend for lunch enjoyed the conversation and catch up. I collected my children from school and while home making the dinner and trying to do the homework with kids, the phone rang. I wasnt going to answer cause I didnt recognise the phone number, the voice on the other end of the line said they were calling from the Breast Clinic and looking to speck to Elaine. I couldnt understand why they were calling, I had only left in the letter that morning.
The woman on the other end of the phone explained the Professor had booked me in for an urgent Mammogram, Biopsy and Scan my appointment is for this coming Tuesday.
I was amazed that I might get to see the professor in 4-6 weeks the usual wait to see any specialist in Ireland is roughly 18 months. So as soon as I heard URGENT, MAMMOGRAM,BIOPSY AND SCAN……………I panicked!!!!!!
My doctor never explained what Paget’s was or what it could be, I was just glad I was getting my breast sorted. I got straight onto my laptop and searched and searched and searched as much information as I could.
I am now wishing I hadn’t looked it up at all I haven’t slept with the worry of next weeks appointment. Yours is the first down to earth post I have been able to find that comes from a woman that I could relate too. Oh and I will be changing doctor, she could have explained and prepared me for the shock.
Will keep you up to date on how I get on.
Elaine x
Elaine I am so sorry you did get that phone call. As most of us girls that have had that dreaded phone call we understand what you are feeling at this time. Maries blog is full of excellent advice and she is quick to reply. Yes when you start to research paget’s it is scarey, but it is better to be informed than not at all. If you have any question just ask we are all here to help. You will find we are a tight community that understand where you are right now with biopsies and the ticking clock….
Sarah M x
Sarah, thank you for replying to Elaine here – I am sure it has helped her very much to know she is not alone.
Your Welcome Marie, I know your blog helps so many on this cancer journey..
Hi Elaine, I am so glad you stopped by and that Sarah has replied here to you. Please keep in touch with us and let us know how you are doing. You are in our thoughts x
Pauline17
Hi
Just found this blog. I think it is great. I was diagnosed April 2010 at 38 with Paget’s and 85mm DCIS in the left breast. I had to have a mastectomy a few weeks after. There was no history in the family. I had to insist they check me for Paget’s. Now all they say to me is ” well you did not really have cancer” and the last appointment I was told I was no longer at risk and not to bother keeping my next appointment x
Wow, this is an amazing and informative blog, thanks so much for sharing everything. I got diagnosed with Pagets about a week and a half ago and am still in shock. I’m 32, single and will be having a skin sparing mastectomy on Friday. I’m terrified. Like most women I had not idea what Pagets was, or that you could even have breast cancer without a lump?! Now I know that ANY changes need to be sorted out immediately, I waiting far too long to see my doctor. I’ve started writing about my experience as I find it really helps to channel your thoughts into something – it’s not as eloquent as yours but hopefully it’ll help get the message out there – http://adventuresofzomersetgirl.wordpress.com
ZomersetGirl xx
I think it shakes everyone up Zomer when we are first diagnosed… Any questions just ask Marie she is brilliant and up to date on what is out there.. Her blog is brilliant.. Glad to see you have joined the writing bug.. it does help filter through the emotions.. and get you asking the right questions.. hope your treatment goes well
Sarah M xx
Hi Sarah, thanks so much for stepping in to answer Zomer’s comment x
As always you are welcome Marie.. keep up the good work .. and love the new design ;-D xx
Hi there, thanks so much for stopping by and sharing your experience and a link to your blog. I will certainly check it out, and good luck with your treatment! Marie x
Hi Sarah, thank you for this informative blog. I am a 53 year old whose right nipple has itched on and off now for quite some time (and of course, always at the most inappropriate times!). I then noticed a rash had developed, but thought it was some type of contact dermatitis. The only thing puzzling to me has been that i have not changed soaps, lotion, laundry detergent, etc. Now, i have a rash also developing on my left nipple, just not as extreme. Also, my right breast has been ultra sensitive (very painful if pressed upon) for quite some time, but i have been dismissing that as ‘normal’. – My left breast is now also tender to touch. – Now that i have ‘stumbled upon’ your blog, i think it may be time to go the doctor and get things checked out. – I want to thank each of you ladies for sharing your story. Hopefully, my doctor will know about Paget’s and be pro-active with searching for the cause of my discomfort. – Blessings to each of you!
I am so glad you stumbled onto this blog also Pam. I have my fingers firmly crossed for you. It is rare for both nipples to be affected by Paget’s, but still go to your GP and say you want further investigations done so at least you can rest with zero worry. Sending a big Hug your way xxx
Good evening iam so glad i stumbled onto this website.
I have a dry itchy scab that has grown around my areola i have had had for approx six months.
I called my doctor who gave me a mammogram and and ultrasound.
THre is skin thickening and an ill defined 14mm x1mm area of reduced echogenicity deep to this area of the skin thickening.
These appearances make it impossible to exclude Pagets disease Biopsy recommend.
This is for sarah mendoza can u email me i have some more questions and how are u doing……i recently found a scab on my nipple and am scared….
Hi Norma, I’m glad you went to your general practioner and you are now being investigated. Sometimes we just don’t know because the focus is on a lump rather than these other symptoms. That’s when we leave it to long before getting check .. fingers crossed for you..
Caroline you can contact me via sarah.mendoza@hotmail.co.uk, but in general the only advise I can give you is go to your doctor because I am not a practioner. The quicker you get checked the sooner your nipple problem can be resolved. While I understand you are scared which we all are when facing the unknown. The best people to help are those that are trained in the field of oncology. I know Marie would agree with me on this reply.. As for me right now I am facing a recurrance of my old cancer. And thankfully I was the one who found it in time.. Sometimes these glitches occur, but I’m currently having chemotherapy… all is going well and my treatment should be finished by next year..
Sarah, thank you for taking the time to comment and advise Norma and Caroline. Journeying Beyond Breast Cancer is a forum to share our experiences and stories, to raise awareness and let each other know that we are not alone in facing cancer and its aftermath. It is not intended to take the place of medical advice. We strongly urge any reader who has concerns related to breast changes to make an appointment to see your general practitioner as soon as possible. Good luck to you both and please do come back and let us know how things turned out for you.
Thank you ladies for your comments, i saw a local surgeon yesterday he was rather vague refused to speculate about what it could be. Iam booked to go into hospital next week to have a biopsy done. I will keep you posted
Thank you for a great website.
Norma
You are in our thoughts Norma and please do keep us posted. Take care my dear. Marie
This is fascinating–I’ve actually never heard of the disease, and am glad I know more about it now. Thank you for getting the word out. Candida
It is rare enough, but it pays be aware of the signs.
Good evening Ladies,
Iam so happy to announce that my results are negative for pagets disease .
What a sigh of relief i was diaognosed with eczema-
Thank you for all your support.
Norma
Norma, we are delighted with your words – health and happiness to you x
Pingback: Getting ready for winter | My cancer journey
Pingback: Parenting With Breast Cancer | Breast Cancer Chat Europe
i have a problem. my left nipple is discharging a straw yellow liquid first it was thick yellow. and my nipple looked like it was peeling white flakes. my nipple has a cleft too. it was very sensitive sometimes. but i had a mammo and was neg for cancer but my u/s says i have a dilated duct. im getting blood tests soon. i think theres something serous here.
Does anyone have any info about pagets of the nipple occurring 4+yrs after lumpectomy, rads, and chemo for tnbc?
TWo days ago my left nipple started to itch…when I looked at it I noticed a red line circling on the skin around the nipple. It looks like I have sores beginning on the tip of my nipple. I am going to my doctor tomorrow…I am scared to death….
Im so glad I read this. Ive had an itchy left nipple for a while now. It comes and goes and since my nipples are pierced and can get a little crusty at the piercing site if I sleep wrong, etc I thought nothing of it. I think Ill get it checked out just to be on the safe side becuae even though it looks perfectly fine I do now find it odd that the other one never itches. The itching only lasts a day or two and the goes away only to come back aftr a few months. Ill hope for the best and prepare for the worst. Thanks for your article.
Please do get it checked out. Sending you good thoughts. Marie
….I will advise all that if you find that there is something wrong with your breast please insist on a biopsy. I too was diagnosed with Pagets Disease of the nipple, but was misdiagnosed at first as nipple eczema. almost a year later before I found out I had Pagets and DCIS in my left breast. I did a mastectomy and now I am ok…thank God….so if your guts is telling u that something is wrong insist on getting a biopsy as doctors dont know everything they wont always get it right.
Alright, I am worried… December I started having this incredible need to itch my left nipple. When I took a shower I felt a burning sensation. At the time there was no lesions. By mid Jan. the first pimple like mark appeared on my areola and in the next few days it had grown larger. The itching and burning sensation in maddening. I used Tee Tree oil and nothing happened. Then I used vinegar, rubbing alcohol, antifungal cream and neosporiam and then I was so desperate I actually used bleach. The idiot thing actually got bigger but was drying out so it also flattened out. However, more lesions appeared. I know have a total of five lesions surrounding my nipple and my whole left breast hurts. It is now Feb. and I am really worried. This week a rash has appeared on my breast and I am wondering if it may be from the Vinegar that I am using. This is the worst. Has anyone ever experienced this and could it be just a bad fungal or bacterial infection?
Tara, it is important that you go to see your doctor and have a proper diagnosis. Good luck!
I went to the Doctor on Friday and he immediately said Paget’s disease. I just stared at him in shock because I thought I would have to show him the information I had come across. He told me I needed a biopsy. Tues. I had the biopsy and now I am sitting around waiting for the results and telling myself that there is no way these lesions could be paget’s. It would be just wonderful if they went away and then I would not have to worry about it. Thank you for responding.
Pingback: Laura Linney’s Big C Character Isn’t the Only Woman With an Uplifting Story About Cancer | Working Well Resources' Blog
Hello truthofyahweh
So sorry to hear of your situation. I do hope your results were favourable as I am presuming they will have come back by now. I am going back to my doctor this week following up from a previous appointment and am nearly certain to be referred for mammogram, biopsy etc for suspected pagets. I am absolutely terrified as I am as certain as I an be without a biopsy that it is cancer and frightened of the results, prognosis etc. I have a daughter aged 6 and can hardly look at her without feeling sick with fear for her. I am also really worried about the pain of the biopsy and mammogram etc, and mastectomy etc if this is necessary. I really hope you had good news from your biopsy.
I wonder how long is too long. Last year I noticed a sore on right nipple. Thought it was chaffing from running bra so I waited and it went away. About 3 months later it came back-I was going on the “trip of a lifetime” and went on internet and googled my symptoms-I thought to myself “I can’t deal with this now” and put a bandaide on it and off I went. It came back again-went to drs he gave me some cream. Then had mammogram and ultrasound over a month ago. It came back “highly suggestive maligancy” got a biopsy of lump but it was benign. The office called and said I needed Mri which said birads 5. Now I have consult w/surgeon tomorrow. I haven’t seen an oncologist yet. I am now told I need biopsy of nipple and lump. I am having a lot of pain. I have always been extremely active, no history of any cancer in family. I have never smoked or drank. But I am pretty sure I have it. I’m scared. I am so upset with myself for ignoring things for close to a year. I hope people learn from my error and don’t ignore things because it’s inconvenient or you are afraid.