Phyllodes Tumor - Anyone else out there?

Hi Vicki,

I have survived the mastectomy and now have the tissue expander in place also. The good news is that my pathology has come back all clear so I now have the peace of mind that I am "hopefully" rid of this evil monster. Was in Hospital for 10 days as the drains were producing too much fluid. I have very little pain just some pain under my arm if I turn the wrong way or bend over. The tissue expander feels quite hard in there and occasionally the muscle feels like it is contracting over it and feels very tight - but not too much discomfort yet!! Due to have the first expansion next week if all goes to plan so I guess I will know what that feels like then. My major concern is how much expansion I want as I would like smaller breasts - it just depends on how much surgery will be involved to reduce and even up the good side????? Will continue to let you know how things go. Hope you are feeling well. Katie.

Hi Katie

Sounds like you have been on a roller coaster ride and still going.

Im so glad you have made the decision for mastectomy, this will giive the clear margins and peace of mind.

You are having skin and nipple sparing mastectomy, which my dr told me the nipple needed to be removed, saying it could get into the milk duct which is connected to the nipple,and wanted to be 100% sure, so your lucky you get to keep it. maybe it was the fact mine was 8.5 cm x 4.5cm, kind of big..

Having clear margins I would have thought I was in the clear, but dosent work like that with the phyllodes, can come back in other areas. so i have decided and spoken to the oncologist and he felt it was a good decision to do the radio as some research has shown that a malignant phyllodes tumor has less recurrence rate with adjuvant radiotherapy, so again time will only tell. but other research show both chemo and radio do not work on phyllodes, it can be frustrating and always in the back on my head, maybe I should keep away from "google"

I am praying for you and wishing you all the best for the 3rd of Feb, you will be fine, just think possitive and know that you wont have it growing in you anymore...all gone.

Please send me a message would love to hear from you again, and tell me about the reconstruction process, so I can have one in due time.

take care of yourself

Vicki

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.

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 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! :)

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! :)