Forum Discussion

auch's avatar
auch
Member
15 years ago

auch

Hi just doing a browse  and came upon your site. your blogs are good for me to read and I do hope you are all going well.

So far all is well for me, I had the lumpectomy done last September and diagnosed as borderline Phyllodes Tumor. Was a huge shock and has  been a bit of a journey to recover physically and mentally.  I have found it interesting the casual approach to this tumor I have experienced.. I mean from the medical profession. Don't get me wrong the staff and doctors were lovely.

How have you all gone re this?

Also for a rare tumor... the last year I have heard of several women in our area diagnosed with a phyllodes.

3 Replies

  • Jennifer_W's avatar
    Jennifer_W
    Member
    14 years ago

    Hello ladies,

    Brilliant that I have found a group specifically about phyllodes tumors! 

    I have been diagnosed with a malignant phyllodes - very aggressive. I  initially had a lumpectomy in April as it had been diagnosed a benign phyllodes , however when they got inside my 3.5cm tumor it was found to be malignant and I am advised  it is the highest malignany rating. This required a wide margin ( 2-3cm) masectomy and removal of my right chest wall; this has then been treated with 30 sessions of radiation.

    The lack of information is a bit frustrating and the  things I have found on the web for malignant phyllodes are a bit scary - nasty if reoccurs.

    I would really appreciate any information sharing you ladies might have on malignant phyllodes and also any details on TRAM flap reconstructions.( i.e. recommended Brisbane based plastic surgeons and recovery times)

     I am Brisbane based if anybody is interested in meeting for a coffee.

    Be well.

    cheers and smiles....Jenn

  • Lydia's avatar
    Lydia
    Member
    15 years ago

    Thankyou so much Katie, the information posted by you has been extremely helpful for me, as I felt the same way as you when I was diagnosed.

    :) Lydia

  • katie76's avatar
    katie76
    Member
    15 years ago

    Welcome to all of our group members. I found it extremely frustrating and completely isolating when I was diagnosed with Phyllodes. I myself had never heard of it let alone anyone else besides my surgeon. I felt that I had to search far and wide to find out what treatment options I had and that there was so little information or support for Phyllodes Tumor sufferers in Australia. I felt that because Phyllodes Tumor was not your usual form of breast cancer that I didn't fit anywhere. That is why I posted my blogs and then started this group so that other Phyllodes sufferers didn't feel like they were the only one out there! :)