Nicola are you on the FB endrometrial stromal sarcoma(ESS) support group it is really good and really helpful also WCSUK (womb cancer support uk) They are two fantastic groups and I know two of us have ess on WCSUK xxx take care and lots of love xx

Marie

Hi how are you doing? 
I have a similar story 

Hi how are you doing? 
I have a similar story 

Hi 

I'm doing ok xx how are you? Sorry I've only just seen the email.

Hello everyone,

I was diagnosed with ESS in 2018. I had full hysterectomy and oopherectomy.

Since my surgery I have had ct scans ( now on yearly) but I still feel my consultant ( who is a gynecologist obstetrician) knows very little about this type of cancer. I've only had abdominal scans since my surgery and it's only because I've told him that recurrence can also occur in lungs that he has now said I can have a chest and abdominal scan next time.

He said sarcomas have a reputation for coming back but that is about all I know really. I just wondered what sort of follow up you may all be having and would be nice to talk to others with the same diagnosis.

Hoping you are all well

xx

Hi 

How are you ? I too have endometrial stromal sarcoma, mine is low grade. I've only been diagnosed recently and had a total hysterectomy with ovary and lymph node removal, I'm waiting for staging which I will get in about 3 weeks. I'm not sure about what my follow up is as I really only took in the immediate treatment at my oncology appointment, but I seem to remember it only being a couple of years and not scans etc, I've however since read up about recurrence etc which has worried me. Have you looked at the sarcoma uk website, they have a whole section on gynae sarcomas . Would be great to be in contact if you would like to? X

Hello there I'm sorry to hear you have cancer I have just been diagnosed with the same cancer mine is advanced I'm waiting to see what treatment I am going to have to help me I am very frightened and depressed I would like to know how any body gets on when having treatment and after treatment thank you all and sending you all best wishes Stephanie xx

Hi Stephanie

im so sorry to hear you have cancer. It is completely understandable to feel how you do. I had surgery a year ago and luckily am now clear and have got my head around things , but it takes time, and I remember the fear, panic and sleepless nights it really is a difficult time. One piece of advice I would give you is to make sure you have a link with your gynae cancer nurse specialist. I emailed or called mine several times when I was unsure , having difficulties or worried about something and it really helped me. 
If you would like to share what's been happening with you and "chat" about it please feel free to personal message me. Im very happy to say what I had / did / difficulties etc and things I found or still find helpful if you would like to. I think the most important thing is not to be alone in your thoughts reach out to forums like this, ask questions, share experiences etc so that you have some knowledge about what is happening. This is a rare cancer so it can feel a bit lonely out there sometimes. Im thinking of you , and will keep an eye out for any messages.

with love Claire x

Thank you so much for answering Claire I'm so frightened that I am going to die soon and frightened about having chemo and how it will affect me I'm 61 and it's only been 11weeks since I have been unwell and now diagnosed with this terrible cancer how can we message privately so maybe I could ask you what treatment you are having if that would be ok ? Thank you so much Stephanie xx