Phyllodes Tumor - Anyone else out there?

Hi Vicki,

Your case sounds so similar - 18 months of watching (6 monthly ultrasounds) a suspected fibroadenoma that suddenly tripled in size. I too got my diagnosis alone after waiting 9 days after the core biopsy was done thinking that it was just a fibroadenoma - nothing to worry about! How wrong could I have been and even then I didn't really understand what it was I had until I got home from work that evening and googled phyllodes and it felt like my worst nightmare began.

Every time I went back to the breast surgeon the news just seemed to get worse -Fibroadenoma went for core biopsy = phyllodes (most likely benign), then lumpectomy = borderline phyllodes with infiltrating borders, then WLE = second bordeline phyllodes tumor with infiltrating bordersfound in the margins; to MRI = didn't pick up anything however there is still a possibility that there could be more not detected due to scar tissue or the tumor is too small. No-one can give any definitive answers for this thing it's all maybe's and so frustrating to not have a clear treatment plan!

I am booked in for a mastectomy on 3rd February as I need to know I have done everything I can to try and rid myself of this thing . I am having a skin and nipple sparing mastectomy as I have chosen immediate reconstruction.

My surgeon gave me 3 options after the second surgery to obtain clear margins came back that there was the beginnings of a new tumor or the remnants of the first (however pathology from the lumpectomy said that the margins were clear - so I think that a second tumor is most likely). I was given the choice to have a third surgery WLE to obtain clear margins or mastectomy or mastectomy with immediate reconstruction. She also referred me to a plastic surgeon straight away prior to making any decisions so I was clear on all the possibilities and was loaded up with information in order to make the best choice for me.

I too will also need a reduction of the healthy breast when the implant is ready to be placed later down the track. I am not having radiotherapy at this stage, but if there is a reoccurence I will have to have radiotherapy and oncologists will need to be involved. I have been advised that I will need an ultrasound every 12 months or earlier if I am concerned about anything new!

I am pretty sure that I have made the right decisions time will tell I guess:)

So glad to hear from you. Happy to swap info too.

Thanks Katie.