High risk with previous Phyllodes tumor

Hello All, 

I'm new to this forum, but have lurked since last year.......y'all seem like a very helpful group of Ladies....so I though I would seek out your opinions on some of my concerns 

My story ( a bit long--be forewarned) 

It all started last May of 2009 when a previously benign Fibroadenoma ( It had been biopsied back in 2005---it was totally benign, no abnormal changes at all)  suddenly ( and I really mean suddenly--Phyllodes tumors are known to grow quite quickly) grew over the course of a weekend! 

I should also state that Phyllodes tumors are extremely rare---less than 1% of all breast disease/cancer 

I called my OB-GYN and had a ultrasound and Mammo, and the Radiologist came in and told me it was either a "Giant Fibroadenoma" or a "Phyllodes Tumor" she stated that both are typically benign...but she was concerned over how fast this tumor had grown--she figured it was about 7cm, and stated that she wanted it removed via surgical excision for a complete Pathology report

I was also told that although most Phyllodes are benign, when they are cancerous, they are considered "Cystosarcoma Phyllodes"  and that traditional methods for treating breast cancer usually don't work........excision is the only way to remove these tumors--if they metastasize, you typically survive for about 3 yrs post DX...........

Well, I had the tumor removed and it was overall benign, but on slide 18--the Pathologist discovered some Atypical Hyperplasia 

Onco suggested SERM's but since I am a genetic clotter ( Factor V Leiden) I cann not use any SERMS 

So I am followed up by MRI and the like for the next year--until they find some calcifations that they  want biopsied--which turns out to be  ALH with some other benign fibrocystic changes 

Family History: 

 My mother passed from Ovarian cancer, and I also have a maternal Aunt who had breast cancer,

My mother was BRCA 1 and 2 negative 

So their suggestion(s) for me at this time--follow-up at 6 mo's and do possible excisional biopsy on the area of ALH 

Also to consider possible PMX due to the high reoccurance of Phyllodes tumors, also adding in the current ALH/family history into the equation 

I'm being sent to a Genetist at MD Anderson for further consult 

My main concerns also are based on the fact that I am Immune deficient ( I have to receive weekly infusions of human Immune Globulins to replace the antibodies that my body doesn't build) and just how well I could handle Chemo if this does develop into any sort of Cancer further down the line........................  

Trying to peer into  the future on this issue is tough enough, let alone trying to figure out what might be my best choice at this time 

I should also mention that  this "breast disease" started during the Meno-transition.........I'm 49 yrs old 

Although I am not able to replace hormones at this time---you really "DO" have to wonder how much the imbalance of hormones plays into BC, as my diet is excellent, I work-out 5-6 days a week and avoid stress as much as possible ( I have to follow a special diet and work-out program, or  I am Insulin Resistant/PCOS--and I already have enough problems that I can't control--at least the IR I can do something about) It hasn't missed my attention that Metformin is being used in certain Cancer cocktails........  

I am wondering what advice you might have to share with me--I'm a very Pragmatic sort and don't scare easily/not the sensitive type--so feel free to share your opinions and advice 

I would not mind hearing from opposing viewpoints, either 

Thank You for taking the time to read this.........

Dawn