Large, aggressive, high grade malignant PT

I had a total mastectomy to remove my very large tumor - about 11cm at removal, I am small chested so i literally had one boob that was double in size. Phyllodes are rare, my type was even rarer! I am lucky to live right outside of NYC and found a surgeon and oncologist that are sarcoma specialists and very familiar with PT. I had one round of AIM chemotherapy, a total mastectomy and then radiation. I trusted my doctors and feel very comfortable with this aggressive course of treatment, my tumor was more aggressive - it grew so fast i think it almost doubled within a couple of weeks of feeling it - how fast it was growing was probably more scary than anything else.

I know many people say chemo doesn't do anything, radiation doesn't help - I find this bad advice. I trusted my oncologist and he followed a protocol for my particular type of tumor. I found another PT sister who had the same oncologist - he didn't recommend chemo for her - likely because it was not as large and aggressive as mine. Each case is different.

We all need to find doctors we trust and advocate strongly for ourselves - no one else is going to do it. If your doctor doesn't listen to your concerns, doesn't seem to know anything about PT or just makes you feel some sort of way - find another! That is my best advice for anyone, that and try and have someone attend appointments with you - i was lucky to always have 1-3 of my sisters with me every appointment - they worked as not only support but back-up memory!