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katie76's avatar
katie76
Member
15 years ago

Phyllodes Tumor - Anyone else out there?

HI All, well this is my first post as I have not been quite sure where to start. I would be interested to know if anyone else out there on this Network has been diagnosed with a Phyllodes Tumor (of any type) and what their treatment involved. 

I have had 2 surgeries recently - lumpectomy and then WLE to try to obtain clear margins however clear margins were still not obtained with my second surgery due to ? remnants of the first tumor or beginnings of a new tumor in the margins. I then had an MRI and there is no further sign of detectable disease however I am still required to have further surgery to try and achieve a clear margin of more than 1cm (currently have 2mm margin!).

I am now making the difficult decision as to whether or not I go down the road of Mastectomy with/without Reconstruction (only option is implants) which I believe would put my mind at ease OR have a 3rd surgery to try and obtain clear margins for this tumor/s and continue monitoring for re-occurence (25% chance)? I would love to hear of other people's experiences with mastectomy or reconstruction.

Thanks for the support.

135 Replies

  • Hi Katie, I just wanted to say welcome to the network, and I'm very glad you found your way here.  I'm not sure whether we have any other members with the same diagnosis as you, but you are welcome here, nevertheless! :)

    If you want to see what others are posting on the subjects you're interested in then you might like to try the site-wide search. Just type 'mastectomy' or 'reconstruction' into the search field (top of the page, just above the main navigation where it says 'start your search here').  When the results come back, look at the right of each listing and you'll see which are website pages, and which are blog posts.

    Hope that helps and fee free to post whatever you like, you're among friends here! :)