Forum Discussion

Jennifer_W's avatar
Jennifer_W
Member
13 years ago

Malignant Phyllodes Tumours

My breast cancer type is rare - it is an agressive malignant phyllodes tumour; I am advised by my specialist that less than 1% of all breast cancers are this type of cancer. Phyllodes is a cysto-sacoma cancer rather than a carcinoma cancer; and behaves very differently via attacking connective tissue.

My treatment is 30 sessions of radiation. Chemotherapy and hormone therapy do not apparently have any positive effects on phyllodes cancers , so I am totally reliant on radiation to combat this cancer.

I am keen to have dialogue with anyone who has been diagnosed with maligant phyllodes as  there is no published material on this cancer via the cancer council due to its rarity. Please contact me with any experiences of malignant phyllodes tumours - primary and secondary status.

I am planning a tram flap reconstruction as soon as possible as my entire right chest wall was also removed at masectomy .Any advise on effects and recovery from tram flap reconstruction would be most welcome.

Blessings and good healing to you all.

Kind regards

Jennifer W

  • Lydia's avatar
    Lydia
    Member
    13 years ago

    Hello Jennifer and welcome.

    I am so sorry to hear about your diagnoses with Phyllodes it is a terrible cancer and so underestimated  as a serious one. Then look at what you are going through.

    we are here for you Jennifer.

    Take care and keep strong.

     

    love Lydia. xxxxx

  • Lydia's avatar
    Lydia
    Member
    13 years ago

    Hello Jennifer and welcome.

    I am so sorry to hear about your diagnoses with Phyllodes it is a terrible cancer and so underestimated  as a serious one. Then look at what you are going through.

    we are here for you Jennifer.

    Take care and keep strong.

     

    love Lydia. xxxxx

  • Lydia's avatar
    Lydia
    Member
    13 years ago

    Hello Jennifer and welcome.

    I am so sorry to hear about your diagnoses with Phyllodes it is a terrible cancer and so underestimated  as a serious one. Then look at what you are going through.

    we are here for you Jennifer.

    Take care and keep strong.

     

    love Lydia. xxxxx

  • Jennifer_W's avatar
    Jennifer_W
    Member
    13 years ago

    Hello Di,

    Thankyou so much for the message and advise on the group.  I have joined and sent a message to Katie thanking her for group set up and a blog message to all.

    I appreciate the opportunity to  'chat' to other phyllodes  ladies and am really keen for information specifically on malignant phyllodes.

    Hope this finds you well and healing.

    C???heers and smiles....Jennifer

  • Di_BCNA's avatar
    Di_BCNA
    Member
    13 years ago

    Hi Jennifer, and welcome. :)  I just wanted to let you know that there is a group for Phyllodes tumor in the network, you can find it here: http://www.bcna.org.au/group/11746. It currently has 17 members.

    There's also been a few posts about phyllodes, so if you type "phyllodes" into the search bar (up the top of the page, just under the green network buttons), you'll see those come up on the search results page.

    Hope that helps, and welcome again.

    Di

  • Di_BCNA's avatar
    Di_BCNA
    Member
    13 years ago

    Hi Jennifer, and welcome. :)  I just wanted to let you know that there is a group for Phyllodes tumor in the network, you can find it here: http://www.bcna.org.au/group/11746. It currently has 17 members.

    There's also been a few posts about phyllodes, so if you type "phyllodes" into the search bar (up the top of the page, just under the green network buttons), you'll see those come up on the search results page.

    Hope that helps, and welcome again.

    Di