Hi Susan

    Welcome to this site, It's so great to hear from others in the same situation especially when your told it's very rare, I was diagnosed 1st March 2010 after having a hysterectomy unfortunately mine had spread to my lungs,neck and underarms and was told it was terminal, that was two years ago and i feel fine infact no different from the day i was told so there is hope for us all.   

    I hope it all goes well for you on the 6th please keep in touch and let us know how you get on, if there are any questions you want to ask please do, hope to hear from you soon.

                                                  lots of hugs

                                                                  Allison xxx

                     HI Linda

                     Hope your injection went ok and wasn't too painfull, iv'e heard of trigger finger but never heard of sleep epilepsy, is it fits when you sleep? stupid question but i really have no idea,

    we are becoming a little group and its great to know that there are others and i am sure we can help each other.

                     I took my daughter to Cardiff on Saturday to buy a present for her birthday which is at the end of this month she'l be 19, last year the whole family chipped in and we bought her a charm

    bracelet from clogau gold ( it was silver with a touch of clogau on it ) anyway i bought her first charm, it was a lovely day and while we were sitting having dinner i thought how lucky i was as i didn't  

    think ,i would see her 18th birthday and i told her that i would buy her a charm every birthday until it was full, i hope and pray that it's one promise i can keep, anyway thats enough about me      

    (think i'm babbling now )

                     Hope to speak soon

                                                    Allison xx

Hi Allison

Sounds like things are going well for you at the moment, I'm pleased you enjoyed your day shopping with your daughter. I'm not very well up on jewellery so just looked up Clogau Gold, very nice.!

It's good to be able to look back and think  'I didn't think I would be about then', makes you appreciate things a lot more. It's also great to have contact with others in the same sort of situation and discuss things, it gives you an opportunity to look further into the future. I went through a period where I was cheerful but didn't give the future a chance, I know I said I wanted to be about when the grandchildren appeared, but sometimes was just living for the moment, fortunately as time went on this was less noticeable and I just sort of blended back into normal routine, well as normal as  it can ever be, it's not something that leaves you completely, or I would never have ventured onto this site.

The injection went fine, I was being a right *** about it, shows you shouldn't read too much about these things, there again it was only into my finger, not a joint or knuckle.  I got sleep epilepsy when I was pregnant second time around.  I would have seizures when I was asleep which would wake me up as I went into it, but I couldn't control it, not very pleasant. Fortunately as time went on I was able to control it in a sense, with being on my own with my 2 young sons when hubby was away with the forces I was scared they would walk in on it and must have mentally overcome it slightly, didn't stop the seizure but was able to stop going unconscious after unless it was really bad.  The drugs control it now and it is rare that I have one, unless I'm really stressed or not well. Played havoc with my driving licence.

Let's hope Susan gets on well tomorrow!!

Take care

Linda x

Hi there Susan

Just a quickie to wish you well for tomorrow I know you won't be reading this before your op, but all our love and best wishes go out to you and hope you aren't feeling too shell shocked when you come round. It would be lovely to hear from you if you are feeling up to it whilst going through your treatment.  Anyway, just to let you know we are thinking about you  and look forward to hearing how things are going

Take care and try and keep your spirits up 

Love

Linda x

Hello everyone

I just wanted to join in the discussion as I too have ESS (low grade). I was diagnosed after my hysterectomy in 2004 (hysterectomy was for heavy bleeding). I have now got multiple recurrences in the pelvis plus two spots in the lungs.  I have just started on provera and have to decide if I have surgery accepting that they probably won't get all of it, or I wait to see if the drugs reduce the tumours significantly which might make surgery easier later. I am most afraid of a colostomy as I was told that if that happens it probably won't be reversible.  I still don't know what to do.

I want to ask Runnerduck how long your medication took to work to shrink things?

It's good to connect with people in the UK who have the same disease. I have been a member of ESS online group since first diagnosis and that is very helpful, but most women are in USA.

Best wishes

Ruth

Hi Ruth

I have just noticed your post on this discussion and the one you started recently.  I am so sorry to hear that the ESS has shown it's ugly head again after so long. That was quite an eye opener for me due to you having been free so long and then it recurring.

I am at a loss to advise you as I have not been in your situation. My consultant did not know what it was and he would not find out until the op.( my hysterectomy was 2 years previous and for several abnormal smears).  The tumour was removed, just leaving some minute cells too small to be removed as they were dotted all over the bowel. It wasn't until 10 days later when the pathology report came back that it was diagnosed as ESS low grade.

So in answer to your question Re: shrinking, it never was, not knowing what is was I was told an op would be performed but there was no knowing if it could be removed and what they would find.  I was very fortunate that the bulk of it was removed.   I was put onto Megestrol/Megace to keep the cells dormant, which is doing what it is supposed to do. 

I too was like you, I had been warned that I may wake up with a colostomy and was absolutely dreading this.  That was my first question when I came round, had I got one?  It did take a while to come to terms with it, was told it would be temporary, then permanent.  I was extremely lucky, due to various troubles, it was decided after a year to reverse it, as if the ESS returns they would probably have to re-site it.  BUT.....   if told I had to have another one, I don't believe (until something happens you never know how you will react) that I would fear it, I managed for a year, some people have them for life and nobody evens knows they have one.

I am sorry I haven't been much help in aiding you with your decision, but am sure the doctors will guide you to do the best thing.

Please  keep in touch and let us know how you are getting on.

Take care

Linda

p.s.  I am quite amazed at the amount of us who are now talking about Endometrial Stromal Sarcoma, considering how rare it is supposed to be.

Hi Linda and all the other ESS ladies

Yes, it is rare but it good to connect with women in the UK who have this disease. I think it will be helpful if we can share our knowledge since it seems even the doctors don't know that much.  I am still pondering but considering not having surgery on Tuesday and asking for a second opinion. I wish I had been a bit more pushy when I was seeing a haematologist about my weird blood results.  I was sure it was ESS back but it took ages to get referred to the gynaecologist even with my history. For me the lesson is that sometimes we do know better than the doctors, particularly with something like this.

I think Susan (mum thumb) was scheduled to have her surgery this week.  All the best to you Susan, let us know how you get on.

Ruth

Hi Ruth

I am surprised it took ages to see the gynaecologist, normally they are pretty hot on this, there again I suppose they have their hands full with all sorts of  referrals.  My oncology team have  made it clear to me that they will continue to monitor it once a year as long as I am happy with that, but to contact them straight away if I have any worries and hope that never happens.

I agree it is interesting to speak with others to hear of their accounts?  How long has it been  since you first thought it was back and what were the symptons?  My experience was weight gain and thought the exercise bike would help, but that is what brought on the pain and made me feel really awful, which was a good thing or it may not have been found.   When did you have to have blood tests? I was told there  is not a test they could do as there was nothing to compare it against, same as with scans, unless there is a tumour, there is no way to identify it.  Obviously, I took this as gospel as as far as I was concerned they are the people in the know.  I have not read of anybody else having the same treatment as me, Megestrol, which is apparently used for breast cancer, so is interesting to hear how other people are treated. I realise everybody and each account is different, but  you start feeling odd man out when it is different, although I should not be complaining as this hormone has worked perfectly for me.

I hope you manage to come to the right decision, how long would it hold you up if you went for a second opinion?  Just out of interest can I ask what part of the country you are in, obviously if you would rather not say I totally understand this.  Susan has had her surgery and just completed here first week of radiotherapy and says it is going well.  Let us know how things go

Take care

Linda

Hi Linda

This is what happened. I was followed up for some years and discharged in 2009. Last year I had some stomach pain and went to my GP because of my history.  She couldn't feel anything, said it was probably a muscle strain but sent me for a general blood test anyway.  This came back saying I had too many red blood cells.  It could be a rogue result as it can be cause by being dehydrated.  The stomach pains had gone away but repeat blood tests showed the same result so I was referred to haematologist.  He had his standard checks to do and focused on usual causes of this - kidney or liver cancer.  I kept saying "but you do know I had this rare gynae cancer" and eventually I got an ultrasound of the pelvis which showed a large mass.  Unfortunately the results of the ultrasound sat there for some weeks till my next appointment. When they told me about the mass and ordered CT and MRI I went straight back to my GP and asked to go to the gynaecologist myself.  It sounds really pathetic now - I wish I had not listened to the haematologist now but once the initial pain had gone I had no symptoms.   Now that it has grown so much I do though! So if you ever have the slightest doubt, stamp your feet and make them take notice - this is what I will do in the future.

I am in Liverpool. I am not sure if we are allowed to say exactly where we are being treated?  Anyway, when I got to the gynaecologists, i had a blood test CA125 which usually picks up ovarian cancer.  This came up positive for me - presumably because the ESS has metastasised to the ovaries. this did lead them to consider it may be ovarian cancer.  However they did admit there's no direct blood test for ESS or endometrial cancer. It was a biopsy which proved it is ESS.

Whereabouts are you?

Ruth