Recurrent Low Grade Endometrial Stromal Sarcoma

Hello, I'm new here and wanted to add my story in the hope that it will help the newly diagnosed a little bit.

I was diagnosed way back in 2004 after a hysterectomy for what was thought to be fibroids. I had a full hysterectomy at that point and once it was clear that this was LGESS they went back and took the cervix too.

All well and good for a short while with clear scans but unfortunately the doctors had assumed that at 46 I might need some HRT to help me with what would be surgical menopause. Back then there wasn't testing for hormone sensitivity.

A year later I had recurrence in my lung and had the lower lobe resected which sorted that out and I ceased taking HRT because I had read about possible hormone sensitivity. Then a further year on I had recurrence in my pelvis and this time I had doxorubicin chemotherapy followed by radiation therapy.

Whether it was the radiation or the ceasing of HRT I'll never know but there followed 14 years of stable disease, there was even some regression of the largest marker tumour from 3.6cm to 3.4com over time and I became so complacent that I decided to stop having annual CT scans. By this time I was over 60 and had been through breast cancer and a broken femur too so I was tired of hospitals.

Big mistake with hindsight because almost immediately I developed pain in my groin. Thinking I might have a hernia or something I ignored it for almost three years before a CT scan showed that my original marker tumour had doubled in size and many of the others had grown larger too. Now there were also lung tumours dotted about as well.

So here I am at 67,  more than 20 years from diagnosis, some problems and some pain but still here and enjoying life, being prescribed Letrozole for the first time.