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ymewhynotme's avatar
ymewhynotme
Member
14 years ago

Paget's disease

I was diagnosed with Paget's disease of the nipple eight months after diagnosing myself through the internet. Misdiagnosed first time round.

I had surgery followed by 7 weeks of radiotherapy.

I was diagnosed in April 2009 and had radiotherapy from early August to early October 2009. 

The reason for my blog is to make it easier for anyone that is looking for someone to talk to about Paget's disease as I realised it is not that easy to find my page. Paget's disease is a rare form of cancer therefore there is not much support available for women newly diagnosed with it.

Love Liz xx

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  • ymewhynotme's avatar
    ymewhynotme
    Member
    12 years ago

    My advice is to go back to your GP and demand a referral to a breast surgeon. Make sure the breast surgeon doesn't dismiss your concerns. You may 

    Request a biopsy of your nipple. The local anaesthetic will hurt like hell but it is worth it for your own peace of mind.

    Kind Regards,

    Liz

     

  • Sue_F's avatar
    Sue_F
    Member
    14 years ago
    Hi Liz. Good to hear you are going well and the masses were ok. As well as my G.P. my breast surgeon also had to admit that I was the only patient he had seen without an underlying cancer . Pagets is quite a rare form eh ! I am going well and have decided against reconstruction, at this stage anyway. I just can't face more surgery. I agree with you if I was xoxo I would ask to see another Dr .....also agree the local anesthetic for a biopsy is not nice. Take care. Sue
  • ymewhynotme's avatar
    ymewhynotme
    Member
    14 years ago

    Hi Sue,

    My GP also had never seen a case of Paget's disease of the nipple.

    I had no underlying cancer in my breast either. I had a lot of cysts that they burst under ultrasound.

    I had my third year check in April and they found two suspicious masses that turned out to be

    the cartilage that they took from behind my ear to make a nipple. 

    Cheers, Liz 

  • xoxo's avatar
    xoxo
    Member
    14 years ago

    I have an extremely itchy, red, flaky and tender left nipple. I have spoken to my GP and she did a swab and gave me a script for batroban ointment. This has not helped and it is still red, sore, itchy and swollen. When I mentioned possible pagets she dismissed it immediately. I'm feeling concerned as it has been like this for over 2 months (sometimes varies from worse to a bit better but is never completely normal) and it is very uncomfortable to live with. Any advice you can offer on what to do next would be most helpful... 

  • ymewhynotme's avatar
    ymewhynotme
    Member
    14 years ago

    Hi Tanya,

    Thank you. I  wish you the same.

    I just thought I should put something in a blog for Paget's disease as it is so rare.

    I am going to have my aerolea tattooed in the next few months.

    Cheers,

    Liz xx

     

  • moira1's avatar
    moira1
    Member
    14 years ago

    hi there, thanks for joining us here on the site, We welcome everyone here, it is so good especially to be able to get and give support, we have all had bc, we know the feelings and fears of the journey. and although we cant give medical advice, we can offer support, and hints and tips which have made the journey more bearable, so once again like we say on here, by helping ourselves we can also help others. Regards Moira

  • Tanya's avatar
    Tanya
    Member
    14 years ago

    Great work Liz!!

    I have just directed Sue F to your blog too, It is so important to feel supported especially when a minority like Pagets.

    Wishing you a happy and healthy 2012 Too.  xx

    Tanya