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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.

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