Paget's Disease of the Breast
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Hi, my grandmother also had pagets, my mum had bc but not pagets.
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my mom had br ca at age 51. Estrogen type.menapausal. My maternal grandmothers sisters had it at age 69 and 72. My mat. Grandmothers brother had it late 30s. I finally got the insurance to authorize the br mri and have my appt for this friday. Biopsies the following week.
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lou seems me and you are the only 2 with family members with pagets. Where you genetically tested?
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No I wasn't, they said it's just probably a coincidence.
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Maya15- I am so hopeful that the port removal was as easy a procedure for you that it was for me and all went well!?
1momx3- There is no cancer in my family. I had the genetic testing and it showed nothing. However, I have tanned like crazy in my youth including tanning beds. Have any of you? Also, what about Pupps skin rash in pregnancy before anyone's Paget's? Just curious as we are such an exclusive " club".
1momx3- hope you and all others starting your journey are doing well and staying positive. Thinking of you all while you get your tests done and sending good thoughts your way!
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No one in my family had Paget's, I do have a maternal aunt who had breast cancer but in her 70s, I'm in my 40's, she had Hodgkin lymphoma in her 40's.I didn't sunbathe at all ever really never had rashes during pregnancy never even heard of that one,just one of those things I suppose.
Hugs to you all
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No never been on a sun bed nor problem rashes during pregnancy, I did breast feed all my 4 children until they were about 1 year old.
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My mother is deceased (no cancer) and I have one sister. My sister had breast cancer - invasive ductal carcinoma and invasive lobular carcinoma adenocarcinoma. She has been cancer-free for almost 10 years now. I have 2 children but they're both adopted. I've never given birth or breast-fed nor have I ever been a sun-bather.
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Anyone had large axilla lymph node with pagets symptoms? Br mri is tomorrow. My mammo and sono showed large axilla node and this morning my occipital ( forgive my spelling back of the head on the same side) node is swollen and quite painful. I am thinking of mentioning this to the bs. I have no infection oral or any other kind. The axilla one now hurts as well. Where before it only hurt when palpated. Anyone had this happen?
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I did. Two of those sentinel nodes whre really big and could be seen on ultrasound, and they did hurt every once in a while, too.
They did a biopsy to check for cancer cells, so they could spare me axillary dissection during the diagnosing stage (at least that's what they said). When that came negative for cancer, they wouldn't believe the results and did remove the sentinel nodes anyway. Pathology again stated they were regular nodes, just enlarged.
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received my mri results. No masses but most of my chest lymph nodes are enlarged. So now i am awaiting a chest ct scan. But the radiologist said could be from recent bronchitis...which i havent had.in fact i havent had any illness. I explained that to my bs. I have no infections so I am very puzzled by this.
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Dear 1momX3,
I also was recently diagnosed with Paget's disease of the breast. I requested a nipple tissue biopsy from my dermatologist after being told nine months ago that I had dermatitis. It turned out that tissue biopsy contained Paget's cells. I had also had a mammogram last June that was negative as well. So, I was sent to a breast surgeon who ordered a breast MRI. When those results came back totally clear, my surgeon still said the treatment was to do at least a cone lumpectomy followed by radiation treatments. I was not thrilled as you can imagine.
After doing a lot of research I presented my breast surgeon (who is a woman) with some information that suggests perhaps the first line of treatment in my case might be just radiation because only nipple skin tissue was showing cancer and no other tumors or any masses of any kind were present. She took the suggestion to their "Breast Tumor Team" meeting that they hold each week and while they all hated to deviate from the surgery standard, the radiologist said radiology alone was an acceptable treatment in my case.
Paget's is very rare and the subset of people with our condition of not having any underlying tumors is even more rare. So, there is very little known about treatment of Paget's without underlying tumors. They don't have any research that suggests the recurrence rate would be any higher than if it were treated with both surgery AND radiation. So, I'm probably going to give it a shot. They will continue to monitor me closely and if I have a recurrence, I can still go with surgery then. What do I have to lose? I'm 68 and I'd like to spend the rest of my life with both breasts if there is the least chance I could.
I wanted to share my story with someone in my situation in case it opens up options for them, too.
Stay well,
Connie
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Well done you. That is very brave, my initial reaction was panic, I couldn't wait to be operated on and remove it. Good luck.
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my bs finally got authorization for the chest ctscan. And got me the appt tomorrow. My axilla node is growing and she wants to biopsy it after seeing the ct scan. Apparently all my chest nodes are enlarged 3cm to 2.4cm. I have not been sick...so She also ran blood work today. Biopsy sometime this week on lt nipple and 3 lymph nodes. Wish me luck. Will post findings. And ty to all who replied.
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I hope all goes well for you, got everything crossed. Keep in touch.
Xx
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I went to see my dr today and he's going to sort out my breast do a fat graft or an implant notsure yet and then reconstruct a nipple from the scar and lift my other one in 6 months as there may be changes in my breast till then I'm delighted I've been feeling very down recently but now I know I won't be left like this I'm delighted nice Christmas present it's been a long road.
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I have just been diagnosed with Paget's disease of the breast I'm concerned does come back can it spread I have questions I am waiting to get in to see surgeon
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hi my name is Yvonne I lost my mom January 16 2017 from bc it was caused from being on hormone replacement it mastisized to her brain and bones. Two weeks ago I was diagnosed with Paget's disease of the breast I have never heard of this I have no other signs no tumors I am 54 I am very concerned if this is not somehow heretita
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Hi Yvonne, I'm so sorry to hear about your Mother that must have been very difficult and so recent too, and now you've been diagnoised with Pagets that's very hard though it's frightening it's very treatable there would be information on it on this website please feel free to pm me. I've recently finished treatment for Pagets I'm 46. Pagets is very rare so there isn't too much info on it, I don't have anyone in my family who had Paget's Have you had mammogram ultrasound or anything, how were you diagnoised from a biopsy
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Yvonne, Sorry to hear about your mom. I lost my mom to cancer in Sept 2016 - her cancer had also metastasized to her brain. It's a difficult road, for sure. I'm also sorry to hear that you've joined our "exclusive" club of Paget's. Prior to April 2016 when I was diagnosed, I had never heard of it either. I had no real symptoms except a slightly darkened and flaky nipple that was occasionally painful. This forum has made me feel not so alone. My oncologist did not feel that it is hereditary although I did have genetic testing done and my 18 year old daughter will have her genetic testing in August. It is very treatable and for me, I had a mastectomy with reconstruction. I went with a larger surgery vs. lumpectomy and radiation. It's a personal choice. I'm just over a year from diagnosis and 11 months from my first surgery and I'm back to doing all the things I did before with no restrictions. The only thing that has changed is the increased frequency in mammograms/MRIs. And that's mostly because I tested positive for the CHEK2 gene mutation. Have you had a mammogram or MRI? Did they diagnose you via biopsy? Ask any questions you'd like. I found this group to be so helpful – particularly in those early, uncertain days. Good luck and keep us informed how you get along.
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Hi I was diagnosed with Paget's in March by punch biopsy performed by my dermatologist. I have a a history of stage 1 melanoma 7 years ago. I am 50, I had a mammogram and ultrasound which were negative except for a small cyst. I then had a MRI with contrast and a guided biopsy of the cyst. All diagnostics were negative. I had excision of nipple and areolar complex, the cyst and surrounding tissue and sentinal node biopsy April 21. I have healed really nicely and am currently playing the waiting game. My appointment with the surgeon is day after tomorrow. (just short of 3 weeks after surgery). I haven't seen an oncologist yet, that will be next.
I appreciate this forum, it's nice to share with others who have had a similar focus in their lives as well.
Happy thoughts!
J.
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Hi Jessiebelle,
Sorry to hear you have also been diagnosed with Pagets, I hope all went well with the surgeon?
I hope you have a fast recovery.
Kind regards
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I have had itching of my breast since 11/16 and then felt a small lump at the 9 o'clock near the edge of my aereola. The itching seems to move around, mostly near my aereola, and there is no noticeable skin changes and no nipple discharge that I have ever seen, except that my bras do show some staining. I started with a new obgyn who sent me for a diaganistic mammogram and sonogram where the radiologist wasn't concerned with the lump. I was still concerned with the itching (and the fact that I had a lump 2 years ago in almost the same spot that led to a lumpectomy and a dx of a mammillary papilloma, which I was told could develop into cancer). I was then sent for a breast MRI, which didn't show anything but the lump. I was still concerned, so I sent for a biopsy. It was much different than the biopsy from 2 years ago, but different doctor, different hospital symptom. Anyway, the radiologis basically went into my breast snd ground the lump and sucked it out. I'm still a little traumatized!! Pathology results showed the lump was just fibrocystic, not even a papilloma. However, i still have the consistent itch, so then referred to dermatologist. She has me on a steroid cream and clariton for 30 days. Then if I still Have itching she will do a punch biopsy. I just really dont want any more biopsies!
Has anyone been diagnosed with Paget's with just itching and no skin changes
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Hi Stampbooker,
I had moderately annoying itching but no discharge, no lumps, nothing on mammogram, ultrasound or MRI. I did have occasional flaking but just thought it was dry skin. I almost forgot to mention it to my doctor...it was truly an after thought. My gyno took a good look and was familiar with Paget's so she sent me for a biopsy right away. If you're still itching after the 30 day skin treatment, I think it would be a good idea to get a biopsy - in my opinion. Good luck to you and do keep us updated.
Cheers,
Kristen
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Jessiebelle,
Sorry you have joined us with Paget's. Glad to hear you're healing nicely. Good luck with your surgeon and do let us know how it goes!
Best,
Kristen
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Hi , just wondering if any of you have been unfortunate enough to have Pagets in both breasts? I have just been to the doctor about my remaining breast with the same symptoms as the pagets in my left breast. She looked at it and has referred me on fast track back to the bc clinic. I'm feeling a tad worried.
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God Lou that's my biggest fear, please god it isn't Pagets you would be very unlucky to get it in the other breast,, sending hugs to you, sorry I can't help
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Thank you Lorrie, I am not telling my family unless I am diagnosed as I don't want to worry them unnecessarily, so it is so nice yo hear from you and to know someone cares and understands how I'm feeling, thanks for the hugs xx
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Hi Lou,, I've been off for a while due to moving. Have you found out about the other breast yet? Seems very rare to get it in both breasts from what I've read. Hoping you have had good results. ((hugs))
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Hi Glennie, thank you for asking, they did an ultra scan which was clear but as you know only biopsy shows pagets, I hadn't got a flare up when I went so a waiting game again to see if symptoms show up again!! Ho hum here I go again. But as you say very rare and unfortunate to have this in both breasts. Staying positive.
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