Forum Discussion

Kahu's avatar
Kahu
Member
13 years ago

Paget's disease of the nipple by a Newbie

Hello,

I have just been viewing some of the posts/blogs on this website. Very appreciative of the sharing. I have a mammogram appt tomorrow. I have had a biopsy and will receive the results on Weds one day into the new year. I only learnt of the term Paget's disease of the nipple a few days ago. I have had a dark, red, itchy & scaly nipple and aerola now for three and a half years. I have been given three different topical creams by three different doctors. Finally the third doctor last week performed a biopsy and advised me of the above term. After much googling of the term the images that come up of affected nipples and aerolas look exactly like mine. I can't help but fear the worst as it has been with me for so long. I am not angry just a bit scared and am hoping for the best. From what I have read it looks like the result will be a masectomy. I apologise if I am taking leaps and bounds before it's confirmed but I feel I just know. If anyone has had the above or has any further information especially through experience I would love to hear from you.  And thanks to all of those who have shared before me. 

9 Replies

  • Kahu's avatar
    Kahu
    Member
    13 years ago

    Hi Sue, Guess what ??  No further treatment needed.  I found out yesterday.  The lymph nodes were clear and I was given the all clear with no further treatment required.  I wept.  I was sooo wrapt.  Thank you Sue for your story, your support and your comforting words.  I feel blessed.  

  • Kahu's avatar
    Kahu
    Member
    13 years ago

    Hello to all who replied to my call for information.  Well Paget's was confirmed, I have had a mastectomy, the sentinal node came up clear and now we are waiting for the post op follow up consultation which is this week.  I read and reread all your comments over the last month and it did help a great deal.  In fact all your stories/comments kept me company :) and I have managed to retain my sense of humour through it all.  A big hearfelt TA.  Kahu

  • Sue_F's avatar
    Sue_F
    Member
    13 years ago
    Hi Kahu. I had a very itchy nipple for over a year before an excema type rash appeared on the nipple and aerola. I left it hoping it would go away, but eventually mentioned it to my Dr who treated it with an antifungal cream for 6 weeks. There was no improvement so he sent me for a Mammogram and Ultrasound, both of which showed nothing abnormal. Fortunately he was not happy with this and sent me to a Dermatologist who straight away said it could be Paget's disease. A biopsy was done and a week later I returned to be told yes it was cancer. Of course this was a big shock even though I had googled and thought it was possible. I was booked in with a Surgeon the next week who then did a Mastectomy the following week. It all happened so quickly and my family and friends were really good, this all happened late Nov 2011 and I was lucky not to have to have chemo or radiation. I am now used to my new normal, though my body minus a boob took a while to adjust to, and now I am back to my usual activities and enjoying life. It is amazing how we cope so keep as positive as you can despite what is happening to you at this time, all the best to you. Sue
  • Tanya's avatar
    Tanya
    Member
    13 years ago

    Hi Kahu

    Ditto to what the others have said, just wanted to add that there are also some other posts/blogs from others with Pagets which may be of interest to you.  I am not a whizz at computers or I would add the link, but you can just type Pagets into the search part at the right of the page and it will take you to others that have posted about Pagets, but just know we are all here to support and receive support and all our diagnosis's are different.  Glad you found us, sorry you had to:(

    Tanya xx

  • Kahu's avatar
    Kahu
    Member
    13 years ago

    for sharing all of that with me.  I am very appreciative and it does make me feel quite less alone which helps a lot. Will keep posting as I head down this untravelled road :)

  • Kahu's avatar
    Kahu
    Member
    13 years ago

    for your reply. And thank you for the contact # & advice.  

  • LeanneI's avatar
    LeanneI
    Member
    13 years ago

    HI Kahu - welcome to the forum - I am so pleased that you have found it and posted so quickly.

    The initial shock and then waiting for results is one of the hardest parts of the entire journey. I remember sitting in front of a specialist immediately after my mammogram and telling her that I wanted an immediate bilateral mastectomy. She sat across the desk and very calmly and softly said "Leanne, I think we will wait to see what it actually is before we make that decision".

    Our minds imagine all sorts of things and usually the worst scenarios!

    Fingers crossed the results will be positive but once you know what you are dealing with, then you can get on with making whatever decisions are necessary.

    Please remember that although our stories are all different and our response to things are all different, this community offers so much experience, understanding and support. Every member has one mouth but twice as many ears - so listenening is what we do best and words of support, understanding and experience flow from many mouths.

    Look forward to reading your posts & following your progress.

    Bye for now

    Leanne :-)

  • LeanneI's avatar
    LeanneI
    Member
    13 years ago

    HI Kahu - welcome to the forum - I am so pleased that you have found it and posted so quickly.

    The initial shock and then waiting for results is one of the hardest parts of the entire journey. I remember sitting in front of a specialist immediately after my mammogram and telling her that I wanted an immediate bilateral mastectomy. She sat across the desk and very calmly and softly said "Leanne, I think we will wait to see what it actually is before we make that decision".

    Our minds imagine all sorts of things and usually the worst scenarios!

    Fingers crossed the results will be positive but once you know what you are dealing with, then you can get on with making whatever decisions are necessary.

    Please remember that although our stories are all different and our response to things are all different, this community offers so much experience, understanding and support. Every member has one mouth but twice as many ears - so listenening is what we do best and words of support, understanding and experience flow from many mouths.

    Look forward to reading your posts & following your progress.

    Bye for now

    Leanne :-)

  • Jo_L_'s avatar
    Jo_L_
    Member
    13 years ago
    Hi kahu it. Is normal to jump ahead in leaps and bounds! Have a look at the recommended websites here,cancer Australia, cancer council. Be wary of the overseas stuff as it is not always relevant. When you get your diagnosis surgery will be an option. You can call 131120 and speak to a cancer nurse if you have questions mon- fri 8-5 maybe 8 pm cancer council Australia. Take care hugs jo