Endometrial stromal sarcoma

Hi Jo, and welcome to the group. Yes - I’ve got the same as you, but with a slightly different approach. In my case I’ve had a CT and an MRI first, to check for spread beyond the uterus, I was told that if it had spread to my bones there would be no hysterectomy.. It was all clear, so I had a total hysterectomy. That said, it had spread throughout my uterus and cervix, although I don’t know how long all of this took to grow to this size. I have been told it’s an unusual cancer, but I know a few people who have them - and are still living. I would love to know which sort of sarcoma it is - I had a hysteroscopy late August, and the sarcoma panel at Q E Hospital in Bham so-called ‘experts’) sat on the results for weeks as they couldn’t decide what it was. Now they’ve had the whole damn uterus to examine..they still can’t make their mind up!

Hi there,

What symptoms did you have for them to do the tests for cancer? I had two biopsy’s over the last 18 months and nothing was found! It wasn’t until after the hysterectomy , they routinely sent the uterus off for testing and came back as ESS. I’m really hoping I get some answers today after “the meeting” to see if it’s spread. The surgeon had to leave my one ovary as it was tucked behind my bowel, so too risky to remove. Also had to leave my cervix as I’d had previous op to tie mesh around it for the prolapse in 2019… again too risky to remove it. So now I’m worried they’ll have to go back in and take the lot! 
fingers and toes crossed we both get positive news very soon. 
keep in touch and let me know how you are xx

Hi Bearski

My niece has ESS 4B with mets to lungs, bladder, vaginal vault, kidney and rectum, diagnosed after routine hysterectomy for a 16cm fibroid, pathology came back low grade ESS three years ago last November she takes aneastrozole tablets and has a monthly injection,  she's still working full time and is doing really well.  Let us know how you get on x

Hi Jane,

Thanks for getting in touch. Wow she has really gone through the mill hadn’t she x

My CT scan suggests it hasn’t spread , thank goodness, however they want to operate yet again to now remove my remaining ovary and possibly my cervix, which was left after my hysterectomy.. too complicated at the time to remove, due up previous surgery for my prolapse!

The Team are having g a meeting this week to discuss my treatment.

Did your niece need radio therapy , chemo, or hormone therapy? 
pkease pass on my best wishes for her.

Jo x

Hi, sorry for the delay, I’ve had the flu and had to go to hospital as I’m on chemo. In answer to your question, all I had was a tiny drop of watery blood on my pants in July, so I phoned the doctors asap. Then it was the hysteroscopy next, with a ‘suspicious polyp and thickened walls’. Then I was told it was a sarcoma and I wouldn’t be having a hysterectomy if it had spread to my bones. After MRI and CT showed no spread, I had the hysterectomy in October

Since then, no response yet from the Sarcoma team at QE hospital in Bham - and I know there’s no NICE recommended drug for sarcomas -that doesn’t mean they don’t give any chemo! However, in my case I’m still waiting (and getting annoyed and frustrated) to see what I’m going to get. I’m already on chemo for triple neg breast cancer (primary, and unrelated to the sarcoma)

How are you getting along? x

Hi Jo, there are too many tumours to remove surgically and for LGESS chemo or Raitotherapy aren't effective and are not offered.  The treatment she is having is anaestrazole which is hormone therapy. Despite all this and the late stage of the cancer she is determined to carry on for as long as she can she was 37 at the time and we were led to believe she might not live for more than a few months she's nearly 41 now and has seen her daughter get her A levels, pass her driving test and go to University the hormone therapy has slowed the growth of the tumours and prevented any new ones. Make sure you see a sarcoma oncologist who will know about but may not have treated a patient with this condition there are only a couple of cases a year in the UK its the rarest gynaeligical sarcoma and sarcoma itself is rare but this one is 0.2% of sarcomas... her oncologist has only ever known one other patient with this ESS. GREAT NEWS for you as they have caught it very early xx

Hi Bearski I have ESS. I was diagnosed like yourself, after a routine hysterectomy in 2009. Not much was known about ESS back then, so I was wrongly prescribed HRT which in fact fed the sarcoma. It is now in my lungs, but I have been stable on anastrozole and zoledex since 2014. The zoledex is because they left one ovary, so if you can get it removed I would, as they are not nice injections to have. 

You can read my full story if you click on my user name and go to my profile. 

• Hi there,, no updates at this stage , got appointment to see surgeon at Warwick on Monday.. then got a letter today to see another surgeon on 6th feb at Queen Elizabeth ♀️ so not sure what’s going on.

hope you’re feeling better x

Jo x

Hi chelle,

what grade was yours when first diognosed? 
like you I was given HRT.. feeding the cancer. and for the bleeding I was given a Marina coil!
I’ll have a read of your story.

thankyou xx

Jo

Hi Jane,

no updates but got an appointment to see a specialist on Monday at Warwick. Then got another letter to see another surgeon at Queen Elizabeth on 6th, so should know more then hopefully .

x