Hi Annie

Sorry to hear what you are going through.  I had an MRI scan last year (for a gallbladder problem) and they discovered a large retroperitoneal mass - also surrounding main blood vessels (a bit higher up than yours I think - next to the left kidney behind the pancreas).  A lot of tests, CT scan, PET scan and a few biopsies later it was initially diagnosed as "most likely a benign ganglioneuroma" in January this year. Due to the position they chose not to operate then. 

Unfortunately I started getting some nasty pains and a further scan revealed some growth and they decided to try to remove it (August).  I had a lot of complications during surgery so quite a lengthy procedure.  Histology has since revealed that the tumour was/is malignant.  They were not able to remove all of the tumour due to the position so I'm now going to have a CT scan to see what's left behind and if any further treatment is needed. The good news is though that the main treatment for this kind of Sarcoma is surgery so that part is now over and done with.I would say I've been really well looked after throughout and the sarcoma nurses are brilliant for any queries and worries.

Wishing you all the best with your referral to Sarcoma MDT and CT scan and hope you don't have too long a wait.   

Hi thanks for your reply....its good to talk to someone as all I can find is a handful of online case studies. I'm glad you are through the surgery and hope any other treatment goes well for you. I've had the CT so just waiting for an appointment to hear potential diagnosis and treatment options. Hate waiting but trying to stay busy as its constantly on my mind. I'll let you know how it goes

Take care x

I agree, had very little luck with finding info, although I did read quite a few medical studies as well. 

These masses/lesions/ tumours are quite rare but I hope your CT scan comes back with some answers and you don't have too long to wait. If you have a contact at Sarcoma MDT it won't hurt to give them a nudge if you think the wait is getting too long. At least they can give you an idea of when you will be discussed.

I had my CT scan today and my next consultation is booked for the 25th November, however I know I could call or email them before then if I get impatient.

Wishing you all the best x

Hi how are things going?

I now have a diagnosis of leiomyosarcoma....although the plan was surgery they are worried about a few flecks on my lungs and are debating therapy first. Currently awaiting a second opinion but I've said I want the surgery as soon as i can...

How did your meeting go and how are you feeling? 

X

Hi, so sorry to hear of your diagnosis but at least you know what you are dealing with.

My scan showed growth at the surgery site as well as a few suspicious lung nodules, so I'm going down the chemotherapy route.  Everything is going very quickly, scan 4th November, meeting to discuss was 22nd November, pre-treatment meeting 2nd December and first chemo treatment 6th December.

There are a number of Facebook groups for Sarcoma patients, I've signed up and find them quite useful. There are a number of members with similar diagnosis to yours.

Wishing you all the best, whether you have it blasted first to shrink or surgery. 

Xxx

Hi I'm not on social media but will access via a relative's account. I have had a look on there previously and find real stories and experiences helpful. Wishing you all the best and hope the treatment gets you to 'no evidence of disease' and remission...its a hard road for us but stay strong weve got this xx