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.

Hi Gosia, sorry to hear that it took so long for you to find a Dr that acted on your concerns. There is a phyllodes support group that I will add you to that has blogs from other members and some great advice and information. I hope your surgery for clear margins goes well. Cheers Katie

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! :)

Sorry for the delay in my reply - have been busy with work, family and holidays. Thanks for your replies, I have made my decision to have mastectomy with reconstruction (implant) and reduction of the healthy breast as they are unable to make the reconstructed one the same size as the good one (too big for my body size)! I am now after information on recovery etc as written in another post which you may also be able to give me some insight into. Thanks Katie xx

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.

Phyllodes Tumor - Anyone else out there?

135 Replies

katie76
Member
15 years ago
Sorry for the delay in my reply - have been busy with work, family and holidays. Thanks for your replies, I have made my decision to have mastectomy with reconstruction (implant) and reduction of the healthy breast as they are unable to make the reconstructed one the same size as the good one (too big for my body size)! I am now after information on recovery etc as written in another post which you may also be able to give me some insight into. Thanks Katie xx
Di_BCNA
Member
15 years ago
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! :)
Di_BCNA
Member
15 years ago
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! :)

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Phyllodes Tumor - Anyone else out there?

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