Hi Jane,

I'm really sorry to hear about your diagnosis - shock is something we, on this website, know all about.  I hope you have some support around you.  Are you having to wait a month to see the consultant - that seems a long time or is it to allow you to recover from your operation?

I'm afraid I don't know much about your kind of cancer.  As you say it is rare.  If you don't find anyone on this website who has been diagnosed withe the same, which I suspect you may not, you could try googling "rare cancers" as there are websites dedicated especially to rare cancers where you are much more likely to find a fellow sufferer. My cancer is also semi-rare and I use the other websites for specific information - here on cancer chat you may find more general emotional support.

They should have told you what is likely to happen next - do you have a Macmillan nurse assigned to you - if so she should give you some guidance, or you should be able to telephone one of the doctors to ask what the likely treatment paths are.

Good luck.

Hugs

Jan x

Hi Jane,

I just wanted to welcome you to cancer chat and also let you know that you are not alone on Cancer Chat with this rare cancer. In fact, quite a few users have recently tried to get in touch with others with endometrial stromal sarcoma. There is for example this thread started by runnerduck123 who also has low grade endometrial stromal sarcoma. I think you will both find comfort in talking to each other. There is also the lovely mumthumb who has been very keen to meet others in the same boat. You can read her threads here and here. Your stories might not be quite the same but feel free to post on these threads and I will also make the other ladies aware of your story. They might be able to give you advice for example on what to ask the consultant next month and it's nice not to feel alone with this rare cancer.

There are also here great people like janojan who will welcome you with wise words and open arms!

Best wishes,

Lucie, Cancer Chat Moderator

Hi Jane

Sorry to hear of your diagnosis and bet it has come as a big shock. You have definitely come to the right site as from reading peoples discussions everybody is caring and supportive. I just wish it had been up and running when I was diagnosed in 2002, I was pulling my hair out trying to get information.

As you say, it is a rare cancer, and nobody on my medical team had heard of it when I was diagnosed  with low grade also.  I had had  a hysterectomy in 2000 and at that stage there was no sign of it, so when I had the tumour removed my consultant had my uterus checked, I was told that if a hysterectomy is done and it  is borderline cancerous they will keep the womb/uterus  somewhere so if there is a query at a later date they can check it. They discovered the cancer make-up but it had not grown at that stage and somehow the make-up had leaked into my pelvic area and metastasised. I was treated with Megace Hormone Tablets as when they asked for advice from the Royal Marsden clinic, they were  told that  in my case chemo and radiotherapy would not work.  I started off on 640 mg daily and gradually they were reduced to 320mg. I still have an annual oncology check, but have been extremely fortunate just a couple of hiccups along the way with side effects from the tablets, but nothing I can't handle. It is easy for people to say don't worry, so I won't, but look after yourself and if you can keep a sense of humour it does help. it's what got me through.

I have also been talking with Allie who also has EES and seeing as she has been diagnosed more recently than me you may wish to speak to her, but please do keep in contact and let us know how you are getting on..... Good luck for your appointment next month.

Best Wishes

Linda

Hi

Endometrial Stromal Sarcoma Low Grade

I had a CT scan last Tuesday and still awaiting the results, fingers crossed no spread.  But the longer the time goes on the more worried I get.  Each time I have had scan, prior to my surgery they either forget to send the results or keep me waiting for over two weeks.  As I was not diagnosed until five weeks after surgery I feel the phrase "no news is good news" does not relate to me.

Has any one else had to wait and chase up scans?

Jane

                                   Hi Jane

                      Welcome to the site, i'm so sorry to here you news and i understand what you are going through, i was diagnosed with high grade ESS in March 2010 and i think the worst part was waiting for the results of my scans, like Linda said.. it's easy to say don't worry but it doesn't help trust me i couldn't function while i waited, but two years on and i'm still and feeling fine so if there are any questions please ask, your not alone and to be honest it's been great to talk to others in the same situation and i hope we can support and help you through this.

                                                                            hope to talk soon.

                                                                                                     Allison xx

Hi Jane

Sorry to hear that you are still waiting for the results of your scan, I haven't had many scans, but when I have unless an inpatient at the hospital at the time,  I was waiting about 10 days before hearing anything. 

I was informed of the diagnosis 10 days after my op and 5 weeks seems to be a long time, but there must have been a reason for the hold up.

Easy to say, but try and stay positive until you hear anything and as Allison says hopefully we can help with any support, such as chatting about it or having a good old moan sometimes. They say it helps to get things off your chest, whoever "THEY" are goodness knows, but I know when I had a sound off with my hospice nurse now and again, she really helped by just listening and after any tears we would normally end up laughing.   Hopefully you will get the results very soon and they will be fine.   Please keep in touch and let us  know how you are getting on.

Take care

Linda x

Hi Jane  (janeyhay)

I remeber your post in Feb and thinking of you as your situation was very similat to mine. It can be a scary place to be and a very big shock .

I was told in Leeds, my local hospital that it wasnt possible to have surgery when the ESS returnhed. My 1st CT Scan after my hysterectomy confimed there was no spread, great reief, Then the 2nd scan showe3d it had returned. I took myself off to the Royal Marsden specialist sarcoma unit in London and here I am now bk home,  thankfully successful surgery with a brilliant surgeon and a completed course of 6 weeks, every day, radiotheraphy treatment.  Although I feel quite drained and tired during the day I am feeling extremely well.

This web site and the chat furum iis certainly a life line with so much support from others. It certainly helps to feel you are not alone.and this site is full of caring people.

Ive just returned to the site and its sogood t read positive messages.

Please keep in touch and I hope all is going really well with you.

Sending huge hugs and lots of love

Susan X  (mumthumb)

Hi Jackie,

How are you, hope all is going well.  When I read your post, your situation similar to mine, and when I got the phone call to say they had found ESS, I knew noting about it. Id had an elected hysterectomy because of pain from a large fibroid. The shock was awful, I felt as though I'd fallen in to a huge black hole. I couldnt speak for about 10 mins I FELT NUMB, my husband just sat next to me and said whatever it is I know you will be fine.  At first I thought there was little hope and as my 2 consultants didnt know what to suggest, other than tablets Letrozole and " lets see how things go "!

I contacted the Royal Marsden in London as a lovely lady , on this site, had told me her consultant had referred her to the |Marsden as they have a specialist sarcoma u it.

I went there and they were wonderful.  I had surgery to remove the tumour in April this year and then 6 1/2 weeks of radiotherarpy.  I first met with Prof3essor Judson, a wonderful doctor specialising in Sarcoma and then had a brilliant  surgeon and radiotherapist to care and look after me.

Ive been back home 4 weeks now and return to the Marsden for the check up and scan on 25 and 26 th Sept, so fingers crossed.

Please keep in touch, would love to hear hw you are now.

You nare so right about being positive and this site is great,  theres so much help and kindness and encouragement from others. Really makes a difference on low days.

Hus and love

Susan X   mumthumb

Hi Jane

Wondering how you are getting on?

It certainly is an awful shock when told of ESS, I couldnt believe it and it took some tme tocome t0 terms with it all .

Its helpsso much to come on the site and get help and all the kind words of encouragement from other woman in similar situations.

I felt so very lonely at first, but this site is brilliant and really does help .

My situation was very similar to yours.  I had not idea or sighs of anything only a large fibriod.  I had an elected hysterectomy  and was told all wsas fine.

It was 6 weeks later I got the phone call to say they had found ESS in the removed womb. First CT scan showed no spread, second one showed a tumour.

The hysterectomy was done 25 July 2011,   ESS recurred around NOv,     Local hospital couldnt offer much treatment, other than tablets, so I arranged it myself to go to the Royal Marsden in London, they have a specialist sarcoma unit. My local hospital is in Leeds.

I had surgery to remove the tumour early April ,  followed by radiotherapy every day for 6 1/2 weeks.

Ive been back home now for 3 weeks and I feel really well andquite relieved, glad the past year is over.

I go back 25 and 26 Sept for CT scan and checks with my consultants.

Please keep in touch, would love to hear how you are getting on, and always here to offer encouragement,

Hugs and love

Susan X    mumthumb