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Endometrial stromal sarcoma

Nicola47
Offline

Hi

I was diagnosed with ESS in November, after arriving at hospital with a blood clot and kidney problems. After scans,  tests etc I was eventually diagnosed 6 weeks later.  I had a hysterectomy 8 years ago at which time I had ESS but it was missed and now I have a tumour around my ovary (which where not removed during my hysterectomy) cancer in my omentum and some nodules on my diaphram. My tumour is inoperable and I am currently taking Megastrol, but wonder if this is the same for everyone. 

It seems to me to be a very lonely place as I know no one with ESS. I am interested in how different people are being treated, how they cope day to day, and their experiences. here's hoping!!

I am a married mum of 4 teenage boy, who's feeling very isolated.

Nic x

  • Offline in reply to babylove

    Hi Stephanie 

    if you press the chat bubble then friends list, then invite 444 that should send me a request. I have tried to send you one but babylove only comes up as arezoababylove, is that you ? I think this is how you do it, I haven't used the site for a while. It's all new to you, and is frightening, it's natural to worry about the worse outcome, but this doesn't mean it will happen . Let's hope for the best. Chat soon

    Claire xx

  • Offline in reply to 444

    Hello Claire I just tried 444 came up as Julia or Kinga is either one of these you ? My user name is just babylove xx

  • Offline in reply to babylove

    No neither are me, I'll see if I can work it out xx

  • Offline in reply to 444

    I wonder if there was a problem with the website, I think I've just sent you a friend request x

  • Offline in reply to 444

    Hi ladies, I thought I would come and say hello, as I have been living with ESS since 2009. It was found after a routine hysterectomy, but as it is so rare very little was known about it then, so they incorrectly put me on HRT. ESS lives off of oestrogen so my ESS spread to my lungs, and I have been classed as incurable but treatable since 2014. I am on anastrozole and zoledex to stop the oestrogen, and I am currently stable, with yearly Ct scans. 
     

    The beginning of this journey is extremely scary, and there may be treatment changes along the way, but it can be managed. Again feel free to add me as a friend if you want to chat x 

     

  • in reply to 444

    Hi 444 and [@babylove]‍, 

    Sorry to hear you've been having a bit of troubling adding one another as friends.

    I hope you've managed to send a friend request now but if not then I hope this workaround will help: click on babylove's name as this will take you to their profile. Once there you should see an 'add friend' button. If you click on that, babylove will then receive your friend request and once babylove has accepted this, you will then be able to chat privately. 

    I hope this helps but if problems persist, just give me a shout :happy:

    Kind regards,

    Steph, Cancer Chat Moderator

  • Offline in reply to Bellabongo

    Hi thanks so much for your post.How are you? I hope you are coping with your treatment ok, I know there can be unpleasant side effects. I'm just on regular scans after my surgery. It must have been very upsetting that the HRT you were put on caused the secondaries, I'm glad things are stable and hope they remain that way.

    Claire x

  • Offline in reply to 444

    Hi Claire, yes it was upsetting at the time, but I thought there isn't anything I can do to change what has happened, and no good holding onto the anger, so I moved on from that. It's best to concentrate on the here and now and not the things I cannot control or change. 
     

    The treatment isn't pleasant. There are so many side effects, the main ones being the aching joints, some days I am shuffling around like an old woman (I am 53). I now have osteoporosis due to the meds, so I am also on denosumad as well. The hot flushes, brain fog, confusion, lack of concentration, fatigue, weight gain, dry skin have all changed the way I live my life. I have had to give up work, and I have lost all confindence in myself. Having said all that, my tumours are stable so I am lucky. I live a different life, but it is a good life.

    I started off having regular scans, every 3 months, which changed to every 6 months, and I am now on yearly, which is amazing. It's a matter of getting the hormones under control with the right meds, and keeping in the stable club. My next scan is in September and I am already getting the Scanxiety. Xx 

     

  • Offline in reply to 444

    Hi Stephanie 

    sorry I've been away for a couple of weeks, I've private messaged you. 
    Thinking of you

    Claire xx

  • Offline in reply to babylove

    Hi Stephanie 

    Sorry I've been away for a couple of weeks but have personal messaged you. I didn't see your post until I came back.

    Thinking of you

    Claire xx

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