Hi Tansy, 

Welcome to the forum although I'm so sorry to read about the news that has led you here. 

I've had a good look through the forum and unfortunately we don't have any current active members who have the same diagnosis as yourself but I'm going to tag in [@SkippySue54]‍ as she may get a notification and pop on to say Hello. 

I can understand that the loss of your fertility has left you feeling lost and overwhelmed. You might find it helpful to chat to one of our team of nurses. I'm sure that they'll be able to offer some support and advice. You can call them Monday to Friday 9am to 5pm on 0808 800 4040. 

Sending best wishes, 
Jenn
Cancer Chat moderator

Hi Jadey89,

It is absolutely horrible isn't it. Because it is so rare, especially in women as young as us, there seems to be so few options, apart from hysterectomy. I was actively TTC when I got this news, so completly devistated. I am also extremely health conscious, eat organic, local, very little sugar or processed foods etc...  so I was really not expecting this. Can I ask did they do a CT scan or any other scans to check that it had not spread with you? and was there ever an option given to you to TTC before hysterectomy? I am so new to all this (1 week in) and feel completely lost. I don't even know if I have time for egg retrieval. What was the purpose of the progestrone tablets, was it to see if the cancer disapeared? I am in Ireland and can't find a single other person who has this. It is so lonely. It is good you have been able to save eggs. The idea of a hysterectomy scares me so much as well. Talk soon. x

Hi Jen,

I have just sent you a friend request as ESS is such a lonely journey, you don't want to be doing it on your own.  There are international Facebook groups just for women with ESS and I think that you might find them useful as some members are going through or have been through exactly the same situation as you now find yourself in.

I have High Grade Endometrial Stromal Sarcoma, diagnosed just a year ago.  I know that at the moment, your emotions will be all over the place and youi will feel like you are on a rollercoaster that you are not able to control.

First things first though.  Are you being seen by a gynaecology oncologist rather than just a gynaecologist.  Secondly, I see that you live in Ireland - Belfast has a good Sarcoma Centre - you need to discuss this with your GP as he/she can refer you there.  You need to look at all of your options - or at least, know in your own mind that there really was no other choice and not have "what if's" later.

I have emailed someone from an ESS Facebook Page who lives in Ireland (Kildare) to see where she is being treated.

LGESS is a very slow growing cancer but it is difficult to fully diagnose or stage before surgery.  The CT Scan will tell them far more as to how quickly they need to treat you.  By the way - when you have a CT Scan, they put contrast dye in your arm.  Make sure that you drink loads before the scan and then loads after to flush it through.  Also, just after they put the dye in (it doesn't hurt) you get a metallic taste in your mouth and you feel all warm down below as if you have wee'd yourself - don't worry, you haven't.  Also, be prepared to be very emotional on your first scan - totally normal.  It is not anything to worry about, doesn't hurt and is quite quick - wear clothes with no metal e.g. zips or your bra - take it off before you go in.  I had to try and get my bra off in the CT Scan room with radiologisits looking in from a window above the scanner - not dignified.  No jewellery (rings are ok if you don't want to or can't get them off).  

Anyway, that's enough to be getting on with for now.  Will be thinking of you. xxx

Hi Sue, Thank you for your reply. I had my CT scan yesterday. I still haven't been moved to an oncologist or sarcoma specilaist. I was diagnosed on July 29th 2019, so it is very new. I think we only have one sarcoma specialist in Ireland. I have family in London and would consider moving if I could get better treatment there. Can I ask did they give you a hysterectomy straight away? I am incredibly devastated about having a hysterectomy as I was TTC when diagnosed, so the idea of loosing my womb is hearbreaking. I am only 34 so I feel much too young. I have read about women being put on progestrone for months in order to allow them to have a pregnancy before surgery, but I just know so little about this and there is so little information out there. With high grade what was your treatment plan? and would you recommend any hospitals in London? Thinking of you too. xxx

Thank you. Tansy

Hi Tansy,

I have sent you a private message in the "message section" of this website.  

Sue

Hello there, 

sorry to hear about your news. I’m 48 had a total hysterectomy on 24th July for fibroids too. also to find out I have low grade ess. So like your self i have to wait for scan to see if it has spread, which should be next week some time. It’s a shock to get a call to go and take someone with you few days later, so the worry starts there. 

Hooefully good news for us when we get our scan. X

Hi Tansy,

Hope everything is fine with you. I was just informed the diagnosis of low grade ESS. Just like you, I thought it was a fibroid but histology turned out otherwise. I read my histology report and the first doctor was not sure of the diagnosis and sent my case for second opinion. This leaves me more uncertain if there is anything wrong and I am actually alright. I am so overwhelmed and still in disbelief, but don't know who I should speak to...

Hi Limie22,

I am so sorry to hear you are going through this. I have sent you a friend request on this site so I can send you a private message, once you approve my request I can message you.

Lots of love, T