Hi, I've joined this group to get information from anyone out there who has had a phyllodes diagnosis. Apparently this type of cancer is only 1% of all breasr cancer. I can't get any statistics and my surgeon has given me a CHOICE of another lumpectomy or mastectomy, how do I make that choice?
Hi Female1965
Welcome to the forum and sorry to hear that you have been diagnosed with breast cancer. While my breast cancer was triple negative I’ve noticed that you haven’t had any replies yet so I thought I’d reply to you to numb you up to the top of the discussion. Hopefully someone will be along shortly to give you the benefit of their experience.
Wishing you the est of luck with your treatment.
Best wishes
Daisy53
Hi
I'm so sorry to hear you have a phyllodes tumour.
Yes, this is an extremely rare type of tumour, but what will help is to understand if the tumour is benign, borderline or malignant before making your decision. If benign, maybe the least invasive option is the way forward when it comes to surgery and I would also enquire about being referred to a specialist sarcoma centre, who see more cases, if this hasn't already happened?
I was diagnosed with a borderline Phyllodes tumour earlier this year, (I did as much research as I possibly could, utilising reputable sources, based in the UK), as I was initially given the option of a lumpectomy, but unfortunately the surgeon was unable to excise the tumour with the required clear margin, (standard recommendation for phyllodes).
I was subsequently referred from my local hospital to a specialist sarcoma centre, whereby I was given the option of mastectomy or an intense course of radiotherapy. I chose the former, in order physically recover more quickly, but that was my preference.
I really hope you get the information you need and make the decision that is right for you.
Take care and all the best. 
