Thanks Steph,

I had a very positive meeting and was immediately given appointments for CT and MRI scans on a 3 monthly basis. I had those and am now waiting for the results on the 18th December. So lots of travelling to South Kensington for the next ten years and hopefully they can be alerted to anything sinister that might occur. My overriding concern is that I've heard of people whose sarcomas have reoccurred in areas of their bodies that are not normally tested during the routine scans. 

Hiya,

Just wondering how you are getting on.  I live in Devon and am being seen in Plymouth.  I see that you have regular scans and yet I am not being offered any.  Had a TAH-BSO in September this year and have my first 3 monthly follow-up in December.  Pathology report came back with Intermediate Grade ESS, stage 1b - the tumour was 11x9x7cms, size of a grapefruit.  ER and PR Negative.  I am on monitoring only, no further treatment unless recurances happen.  My consultant says that most recurrances occur in the pelvic region first then lungs and that they almost always cause symptoms.  I had a bout of cystitis but they were very quick to give me a check up as I had pelvic pain.  Big worry.  Hope to hear good news form yous.

Hi Sharon

i was just wondering how you are getting on. I’m from Kent.  I know your post is a couple of years old but I’m a year out and looking into this more and thought I’d reply as found your post.

nikki

Hi Nikki,

How are you doing?   Is everything ok with you? You have LGESS?  If I can help in anyway, let me know.  I have not heard back from Sharon.

All the best.

Sue

Hi Nikki

Thanks for getting in touch. i've just finished my 2nd year of check ups and am currently clear. I'm now on 6 monthly appointments - my next is 2 days after Christmas. Which part of Kent are you from?

Sharon