Hello nat-l-d-1988

I'm sorry to hear that you've recently had your diagnosis. I know it's been a long wait for the results and it's great to hear that the CT scan didn't show any other concerns. 

We do have some information about soft tissue sarcoma on our website here which may be of help. I'm not sure that we have any members active at the moment who have had a soft tissue sarcoma but hopefully if we do they'll post to share their experiences with you. I did want to let you know though about an organisation called Sarcoma UK and I'm sure that you'll be able to connect with others through their support services. 

If you'd like to chat things through with one of our team of nurses you're most welcome to give them a call. I'm sure they will be able to give you some support and information ahead of your next surgery. They're available Monday to Friday from 9 am to 5 pm on 0808 800 4040. 

I do hope that your surgery goes smoothly. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi 

how are you getting on? did you find more information for sarcoma? The McMillan support group is also supportive.

i had a biopsy taken last Wednesday by a sarcoma team, they said it will be 10 to 14 days before I get my results. 
 

Try and stay strong so you can fight it all the way 

Tracie 

Hi

well my story still continues. The sarcoma MDT have decided to send the lump to Boston for a 3rd opinion on what type of sarcoma it is, so awaiting on them to come back now before setting a treatment plan up. 
 

I have had a lot of information now on it so do feel quite clued up.

how are you doing? The wait isn't nice Isit. I had mine removed 11 weeks tomorow. I am hoping by next week I finally know what is going to happen going forward and have a date for my next surgery.

Hi 

wow the wait continues for you, sorry to hear that. 
 

being clued up will prepare you and give you confidence for what happens next. Let me know how you get on please and stay strong.
 

the wait and not knowing is still happening for me!! Biopsy taken last Wednesday morning next Wednesday will be 8 weeks from when I went to the doctors about the lump and in that time I have been sent to a consultant who then sent me for an MRI, when he got the results from the MRI he said it was definitely not a fatty lump and what ever it was it was in the deltoid muscle 2.5cm, he then sent it to a sercoma team, who then asked me to go in for a biopsy and this is were I am at. 
7 weeks this week so not to bad compared to others  

stay strong 

Hi 

How are you? 

Any further news on which sarcoma it is and the treatment plan for you?

I had my biopsy taken on Wednesday 31st March and I am still waiting on the results!! 
the nurse said yesterday when I phoned that some of the results were back but they are just waiting on the fish results what ever that is. 

the waiting is horrendous 

stay strong 

traice

Hi 

i am

So sorry for the delayed reply! Have you had a reply about your results now? I have had all the info Marion in the type of sarcoma

i have and this week I went in for my second operation which has Hopfully removed all of the affected tissue now and got a clear margin. So again a waiting game on results.

Hi Tracie

I know it has been two years but you are the only person I have found so far in the forum with an intramuscular lump inside the deltoid muscle.  I've only been in this journey for 8 weeks and had an ultrasound (5cm tumor found 5 weeks ago) and MRI so far.  I'm still waiting for MRI results and worried about the rate of growth (visibly growing and protruding) and discomfort (lump is painless but pressing onto nerves).  My lump suddenly appeared one morning.  I would really be grateful if you could let me know how you are getting on.  I'm hoping all is well at your end. X

Hi

just reaching out has we are in a similar situation. My husband had a lump in his arm for 30+ years then in January last year it started to noticeably grow, to cut a long story short he went to two GPs one said it was cosmetic and nothing needed doingand the month later he went to another GP who said he didn't like the feel of it. My husband then waited 5mths for an ultrasound, inconclusive, then for a MRI at our local hospital to be told it was benign. Our GP put it to a MDT at a specialist centre and after biopsy it has come back as a clear cell sarcoma. My husband has a operation booked for this week. This has come as a complete shock and when I go on doctor goggle it's just so rare, I just so worried about the length of time it has taken to diagnosis. I hope it's ok to reach out to you, as it feels like a lonely place 

Hi Maryann

I'm so sorry to hear this, and please let me know how the operation goes. Thank goodness you have a GP who pushed your husbands case forward. I read this week that many GP's only see one sarcoma during their career. There is still so much to learn. I just hope that if the lump has been there such a long time the outcome is favourable. At least you both now know what it is and will deal with it together. I will be looking out for an update and will be thinking of you both. X

Thank you will do, his operation is on Wednesday, things have gone quite quickly from finding out it is a sarcoma, he's has a CT scan MRI scan and on Tuesday a PET scan, apparently this is the standard to ensure the sarcoma is contained before operating. we have had the results of both the CT and MRI and no issues just anxious to have the results of the PET scan X

Regards