Endometrial Stromal Sarcoma

Hi, I've just joined the forum.  I have had a history of aggressive endometriosis. Had hysterectomy, salpingo oopherectomy, bowel & vaginal resection when I was 29.  Since then, I've lost my right kidney, more bowel & my bladder (fortunate that I was suitable for a neobladder). Re-diagnosed as ENDOMETRIAL STROMAL SARCOMA .I am now 58 & have had 2 open surgeries, 17 hrs in total,  in last 18 months to try to remove a 6 cm lesion in my right pelvis. Many lymph nodes removed & damage to nerves going down right leg later, the tumour is still there.  I am considering the Oncofocus test (targeted DNA testing of the tumour biopsies to pinpoint the drug therapies which will have an increased response). However, my oncologist says that any drug therapy Oncologica recommend as a result of the Oncofocus test will likely not be licensed in the UK & even if it/they are, will not be available on the NHS.  The current plan is to (yet again) try Letrazole hormone therapy to try to shrink the tumour, followed by radiotherapy. However, if it works at all, will only hold it back for a while (no more specific than that).  I have had 9 major surgeries, with many minor) so they say it's far too risky to open me up again due to the horrendous adhesions & scar tissue.  Although always upbeat in general & have always worked,  I am at an all time low, having osteoporosis & arthritis too. Has anyone any knowledge of the Oncofocus testing outcomes? Thank you for reading this far!  Best regards to all x

  • Hi Snowquartz, 

    I'm really sorry to read about what you've been through and where you find yourself now.

    We've only had one member asking about oncofocus testing back in March so I'm not sure how much our members will be able to help with this one but you're more than welcome to give our cancer nurses a call about this next week. Their freephone number is 0808 800 4040 and lines are open Monday - Friday between 9a.m - 5p.m.

    I'm sorry I can't be of more help to you at this time but I hope you're able to find out more about it soon.

    Kind regards, 

    Steph, Cancer Chat Moderator