benign phyllodes tumor

Hello, I am 31 years old.  About a month ago I noticed a lunp at 11:00 on my right breast.  I went to the ob, they scheduled a mammo and a sonogram.  I then went for a core needle biopsy.  I have a benign phyllodes tumor.  I have gotten 2 pathology reports with the same conclusion.  My ob told me I needed to have it removed so I have set up 2 appointments with 2 different surgeons next week.  I am concerned because while I am glad it isn't cancer it is still involving cutting out a protion of my breast.  My family doctor and my ob are not familiar with the type of tumor.  I have read and read and read about them.  Should I be concerned that they know nothing about them?  I asked both surgeons before making the appontment if they had experience with them and they both said yes.  I am also worried about my breast not looking the same after?  

[BhumikaMD]

Hi,

It is ok that your doctor and OBG have not come across any cases of phyllodes tumour. Your surgeon being familiar with the tumour and the type of surgery is what is important.

Approximately 20% of phyllodes tumors will recur locally if removed with no margin or a small margin, regardless of whether they are benign or malignant.  A wide excision with a 2cm margin of normal breast tissue is appropriate therapy for benign and borderline phyllodes tumors unless they are so large that this is not cosmetically feasible.  

What size is the tumour? Well, some size reduction might be obbvious as a 2 cms margin will also have to be removed.

But it is still advisable to go ahead with the surgery - discuss the details with your surgeon first.

Do get back to us if you have any more doubts. Also , keep us posted about your progress.

Hope this helps.
Good luck.

[sanny123]

Hi,
I have a friend who has a benign phyllodes tumour. her doctor recommended a mastectomy, but i wonder if this is too drastic. he said it was not cancerous, but that it had 'fingers' and might come back or appear elsewhere in her body so to be safe, he wants to have the mastectomy. should she get a second opinion? should she do radiation instead? the lump has been cut out already, what should she do now?

[Dafurr]

A related discussion, Mastectomy? was started.