Paget's Disease of the Breast

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  • 3Tara9
    3Tara9 Member Posts: 3
    edited February 2015

    Had my punch biopsy of the left breast yesterday...strangely enough, the dermatologist found a spot she "didn't like" on my back and did a punch biopsy of that as well.  I head back in to have stitches removed and to discuss the results on Monday, March 2.  Waiting is the worst!  Soon, grasshopper, soon, I must remind myself! 

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  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015

    Hang in there, Tara,, and keep us posted.

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  • lou23
    lou23 Member Posts: 182
    edited February 2015

    I am waiting for results of biopsy suspected Paget's, feeling unhappy as I was to get the results Monday , i have had a phone call saying its not going to be ready in time for my appointment, next clinic is in 2 weeks time.such a long time to wait I'm feeling very anxious.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    lou,, it is so hard to wait.  If they do not have the results at your appt on Monday,, can't they call you with the results?  Reschedule you for an earlier appt when the results are in?  Emphasize to them that you can take bad news, if necessary, over the phone,,, it's just the unknown that is soooo hard. Hopefully it will be good news over the phone,, but if not, at least you know,, and can start to plan what to do.   **hoping for good news**

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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    Thanks Glennie I may phone them tomorrow.


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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    Hi, just had a phone call from the Consultant and he has arranged to see me on the 11th out of clinic, but won't tell me any thing over the phone. That's 5 days earlier.Saying the biopsy results not back yet!!

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2015


    glad you got the appt moved up, at least.

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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    Hi, just thought I would keep you informed, I had a phone call from the hospital today, the doctor wants to discuss my results tomorrow but has ordered a MRI scan for Thursday. All will be revealed tomorrow.


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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2015


    In the bag for you, Lou.  Let us know.

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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    Not good news I'm afraid, it is Paget's in the left breast, MRI should tell me more, results on Monday. Thank you Glennie for your concern x


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  • danielle3
    danielle3 Member Posts: 28
    edited March 2015

    I am sorry to hear this, lou23. Thoughts and prayers go out to you.

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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    Thank you Danielle, I have a good family to support me all the way, and I am glad I joined this group your thoughts and prayers help.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2015


    (((lou)))  I'm sorry to hear this.   The breast MRI can tell you if there is anything else going on in the breast. I'm sorry that you are joining the BC club.  Let me know if I can help in any way,, answer questions, etc.

    Before I had my breast MRI, I looked on Youtube for how they did it. I've had neck MRI's before and wondered how it was different.  They have you lay over this stand so that your breasts hang down thru it so that they can get the images. You'll be laying on your stomach for it. Don't know if you want to check it out on Youtube or not,,, I tend to want to know everything before I go!

    Hang in there!!!

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  • lou23
    lou23 Member Posts: 182
    edited March 2015
    • Thanks for that glennie, at least now i will be prepared.
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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    Well another wait now until Monday, I'm not a patient person !!. But I did manage to stay still for 45 minutes, and that wasn't as hard as I thought.


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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2015


    Hey Lou,, glad that's over for you.  Waiting with you for Monday.  I have a colonoscopy on Monday. We will both be having "fun" days.  Hang it there!!

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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    Glennie hope all goes well for you on Monday, I will be thinking about you.

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  • jmb5
    jmb5 Member Posts: 532
    edited March 2015

    lou23, sorry about your results. Hoping you get some good news on Monday. And all of us understand the pain of waiting. It really is so so hard. Hugs!

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  • catlaw7
    catlaw7 Member Posts: 8
    edited March 2015

    Hi: Was wondering how you were doing? I am very new to the forum, just Monday I was diagnosed with Paget and nobody seems to know much about it...went for my MRI today so that will give me all I need to know when I go see my breast surgeon on Tues...I am so terrified, what is the prognosis? I don't dare read to much, although I know I should...I had my nipple removed last Wed and they found a very small underlying cancer under the nipple......what does all this mean? Terrified....please help...

    Thank You,

    Catherine Reed

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  • catlaw7
    catlaw7 Member Posts: 8
    edited March 2015

    I called a local breast center and the volunteer had never heard of Paget's? I know it is rare, are there any studies we could particpate in? Is the prognosis as bad as I have read?

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2015


    Not sure where you read that the prognosis is bad.  Paget's alone is localized to the nipple & areola area.  There is often an underlying cancer like DCIS (which I had) or something else.  The treatment standard is either mastectomy or lumpectomy with radiation.  You may need more treatment if you have an underlying cancer.

    Paget's is rare and many people have not heard of it.

    Here is some information:  http://www.breastcancer.org/symptoms/types/pagets

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  • catlaw7
    catlaw7 Member Posts: 8
    edited March 2015

    Does anyone have Pagent Disease? I would really like to talk to them......Thank You

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  • catlaw7
    catlaw7 Member Posts: 8
    edited March 2015

    Glennie: When did you find out? What have you had done so far?

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2015


    I was diagnosed June 2013. Had mastectomy Aug 8 2013.  Pathology showed underlying DCIS that was not seen on mammogram or ultrasound or MRI.  6 nodes removed,,, all negative. I've had no other treatment,, just 6 month follow-ups.

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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    oh this is going to be a long weekend for us all. !! Hang in there girls x


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  • catlaw7
    catlaw7 Member Posts: 8
    edited March 2015

    Thanks for my questions, I am just scared out of my wits.......I am so glad your doing well....do most people have a mastecotomy that have Pagets? What is DCIS that people are talking about? I thought I read the Pagent was an invasive cancer, sometimes I read more into things than I should...I would appreciate you and all the girls staying in touch with me as I continue down this long journey.....Thank you so much

    Cathy

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  • catlaw7
    catlaw7 Member Posts: 8
    edited March 2015

    Lou how are you doing? I was just diagnosed with Pagent in left breast on monday, yesterday went for my MRI and we talk to the surgeon on Tues...the wait is awful and I feel terrified.....I hope you are doing ok, can you tell me a little bit about your journey so far?

    Thank You,


    Catherine A Reed

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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    I have had a sore left nipple for about 6 months but kept putting sudacrem on and that helped a little. I went to the doctors after Xmas when it bled a little and crusted over, it seed to get slightly better but not right. The doctor gave me an antibiotic cream. When that didn't work I was sent to the breast clinic, I had been there twice before to have cysts drained. They did a mammogram and ultra sound , they were both OK, they took a punch nipple biopsy and unfortunately that has come back positive Paget's. Just waiting now until Monday to get my MRI results. My grandma also had Paget's, she died of it but she hadn't had treatment she left it too late. Hoping I have caught it in time. Hope your results are good.

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  • catlaw7
    catlaw7 Member Posts: 8
    edited March 2015

    Hi Lou: I am trying to be brave and get my results on Tues......they have come a long way with breast cancers....someone on here said that Paget was not a "your going to die diesease" I have left my for a very, very long time as well....I had a breast reduction done 2 years ago and the nipple never healed, just blew it off saying it was the Breast reduction. They removed my nipple last monday and when they sent it away it came back positive for pagent with a very tiny 3 mm cancer under the nipple....I am hoping everything will be ok and go alright...I will keep you in my prayers and good luck monday, keep me posted,,,,,,long, long weekend this weekend isn't it? Hope you have great results.

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  • lou23
    lou23 Member Posts: 182
    edited March 2015

    Yes I think possibly Paget's on its own is only life threatening if left untreated like my gran. I think it may be under lying cancers that could cause a bigger problem depending what it is. Hopefully we will both have good news next week. Fingers crossed.I hope you are lucky like me and have a good family offering support. Unfortunately my mum was diagnosed with breast cancer last June so we are dealing with that also. Hers is not Paget's.

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