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 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