UPDATES… Not good news! I received the PET Scan results and it shows metabolic activity in those lung nodules. Also the worst part is that the report say there is hypermetabolic mass seen on my amputated stump. I have been having pain wear my prosthesis and was assuming (should never have) that it was due to my prosthetic leg not fitting well. I am seeing my oncologist today. My thoracic surgeon had mentioned that they would not consider a lung surgery if this has spread elsewhere. I am not quite sure what the mass is in my stump, will need a biopsy probably. I have never heard of tumor coming back on the amputated stump, hopefully it is some inflation.
Please keep me in prayers 
I am very sorry you are going thru this. I am certainly keeping you in my prayers. I recommend you find another opinion and try to get radiation or the nodules removed by a different hospital. That thoracic surgeon does not seem to be giving you good advice. Even if it is on the leg again which I doubt it since you have amputation there is no reason to wait to get treatments in the lungs.
At the same time don’t let any of this affect your positive attitude! Enjoy every day as it is a blessing.
Thank you Ricky.
I met with the oncologist and they said there was no option to do a surgery as the bad guy is now in my led and also the lung. I insisted I need a biopsy to confirm this was actually malignant, however they are 99.9% positive that it is a tumour considering my history.
They said if they do a surgery then there is possibility that it has already spread to other areas that is now not visible in any scans. Basically they said let’s do chemo with high dose of ifos and see how it responds to treatment and if it does, then they would discuss other options for surgery.
I am quite confused on what route to be taken as they took the option of surgery off the plate. God will do his part and I will be healed. Right guys?? 
It is difficult to make decisions. But you are the only one that can make them we all will support you with whatever decision you make! Get another medical opinion to be better informed. Chemo will probably keep it from growing in your lungs and leg or reduce the size but you need to get it out anyway. What you can’t do is wait. Continue being a supergirl!
Note that I also heard that there is trial with Chemo and Votrient at the same time. You may want to do the chemo and then lineup the surgery or radiation right after that. The chemo will probably help keep the tumor at bay while you decide what is your next move.
I agree with Ricky in getting another opinion. My partner has SS that has spread to lungs and they are doing gene tests which will take approx 6 weeks to get results back from. Oncologist has recommended this because as he said like you it’s now likely that it has spread more but unseen as yet. So in other words if you do surgery or chaemo it won’t stop other mets so why put yourself through this. He said the best treatment should be based on targeted therapy hopefully immunotherapy which would target the individuals tumour. Hope this makes sense!
Thank you Dadoona. Is there a specific name for this gene test and also could you share where this is available. I came across something called test with T cells. Will get more details today hopefully. I am also looking into options of immunotherapy but looks like no much trials are available in canada.
We are in Australia but it’s called - Nominator Trial ( google it)but something similar would definitely be available where you are. At this stage the most important professional will be your oncologist - is he/she experienced? As well as experience you need someone who is very dedicated and will do everything possible to help you, they also should be experienced with the latest in immunotherapy - maybe someone in this group could help in referring an oncologist like this to you - just put it out there and ask. Are you in the US? You need to be pro active - do you have someone close who can go with you to appoints? You need to be honest and open with Drs - it’s your life, never be scared to ask for what you want done.
Sorry i just saw that you are in Canada!
I forgot to mention that to have this testing Drs will need samples of your mets not the original tumour as that can differ.
Thanks Dadoona. My oncologist is a specialist in sarcoma. I am in Canada. We are looking into options for Car T cells trials and also immunotherapy. My husband and family are with me. The doctors here has advised to start chemo in two weeks but we are trying our best to find a better option to treat this prior to starting chemo.
Anyone with more information on treatments available for lung Mets and also about immunotherapy or other trials in US or canada pls let me know. Any information is greatly appreciated.
I am also getting a biopsy done this week as they said it is spread to my amputated leg as well. They said there isn’t a need for biopsy as they are positive that the mass is synovial sarcoma but I insisted that I need a biopsy and will be requesting for more soft tissues in case of need for a trial.
That’s great! Yes you still need biopsy to be 100% and to send away for gene / DNA testing . If immunotherapy is going to be used they need to know specific targets so testing is essential. Car T treatment can be very effective as well i believe. Who wants to try chaemo your oncologist?
The testing is the most important thing to get done asap as results take a while to return - so yes push for biopsy asap, your oncologis is the one that needs to arrange the tests re immunotherapy. Trials to consider wont be specific to SS but more so your specific tumour - eg 80% of SS expresses NYESO 1 and melanoma expresses that 100 % so any trials for even other cancers you possibly may be able to access as well.