Hello

My name is Jane and this week have been diagnosed with Low grade endometrial stromal sarcoma, I had a hysterectomy five weeks ago due to a very large fibroid.  When they took it out it weighed just over 7 pounds.

The cancer is quite rare, I am told I not many in this country have been diagnosed.  Not really sure what happens next, can any one help, I am due to see the consultant next month but am now worrying as the shock has now set in.

  • I note that you are in the UK.  My question is about scans.  I have been told that I will not have regular scans, only have them if I show symptoms.  I am from Plymouth.  I have Intermediate Grade Endometrial Stromal Sarcoma and am ER and PR negative, Stage 1b with the tumour in the upper uterus and no involvement of the cervix and pelvic washes clear.  Seems a bit of a weird diagnosis - I am 64, active and not overweight.  I have never been on HRT or taken Tamoxin.  Only possible cause could be radiation exposure as spent a lot of time in orphanages in Belarus close to Chernobyl between 2004 and 2010.  I have my first 3 month follow up in December after a TAH-BSO in September.  How many scans / xrays do you have and do you have to fight for them?  Do you think they are any use or wouldvwatching for symptoms plus physical examinations find as much.  How are you doing now?  Hope all is well.