Masectomy after Borderline Phyllodes?

Justfedup

Hello all,

I've asked to join this forum because I am hoping someone out there might have had similar experiences or give me suggestions on what I could do to make this awful situation less frightening. Sorry this is so long!

At 28, just a few months after getting married, I was diagnosed with having a borderline Phyllodes tumour. By the time I had a lumpectomy it had grown to 11cm. On receiving the results, I was advised that they were still traces showing in me and I would have to have a wide local excision to get a clearer margin. On results the consultant said he was happy with the outcome and the ordeal should be over. I was seen at 6 months and all was fine.

Then last year, pretty much 1 year later to the date I was told it had come back but this time far more agressive. I had a therapeutic mammaplasty and about 40% of my breast was removed. They were very pleased with the outcome but wanted to keep a close eye to make sure all was ok. I was told i'd be seen at 3months intervals thereafter but after the 1st visit the consultant said all looked well and put me back to 6monthly check ups.

Now again for the 3rd year I have found another lump. I had my appointment this week and the consultant believes its a new growth, not recurrence from the previous one given its further away from the previous lumps. I then had a biopsy and ultrascan and the person showed me my previous lump and this and said she believes it to be similar to the growth 2 years ago.

I know it's a rare type but someone must have some answers or experiences they can share. I just can't keep going through this every year. I'm considering going for a masectomy but I am not sure if that's too drastic given its only a borderline tumour. Has anyone here gone for a masectomy after being diagnosed with bordeline phyllodes?

I don't fit into any of the known common characteristics for developing phyllodes or have any one else in my family who has suffered with this. The senior consultant who saw me originally said I am the youngest patient he had seen with Phyllodes and there are just no answers as to why it comes. Might it be worth me getting a second opinion elsewhere?

I'll get my results at the end of next week. Although I've been through this a few times this time I feel more scared and just fed up.

Any suggestions, thoughts, an e-hug would be greatly appreciated.

Thank you for welcoming me to the group x

BarredOwl

Hi Justfedup:

Sorry to hear you are going through this yet again!

From my limited reading, it seems like the margins are critical with phyllodes tumors, but they can still recur. Once you have your results back from your recent biopsy, you may indeed wish to seek a second opinion, including a review of all prior imaging and pathology (the actual slides are sent for an independent review). Teaching hospitals at academic centers may have more expertise with less common types of disease. You can take that opportunity to discuss all available options.

You may also try posting in this Forum for Less Common Types of Breast Cancer, where there are some other threads about Phyllodes tumors:

https://community.breastcancer.org/forum/137

In this thread, another member looking at mastectomy:

https://community.breastcancer.org/forum/137/topic...

Hoping for the best possible outcome for you!

BarredOwl