Hey. I live in the UK and have recently received the news that the Synovial Sarcoma that was removed in Feb 2009 has returned. Originally it was removed by surgery with no chemo or radiotherapy and scans have been clear up until now. My dilemma is that the hospital are advising that I hold off the chemo treatment until it is at a stage where by the symptoms of the tumours are too much to live with or when they feel that 'now' is the time to give such treatment. Does anyone have any knowledge of this pathway? Has anyone been in this position and taken this advice?
Oh my God! Now! Sarcoma is a nasty demon...do not trust it. It can sit there for a long time or hit you all of a sudden. Don't take that gamble. START TREATMENT NOW. Good luck.
I would kick up a fuss, this doesn’t sound right and consistent with advice I was given. Here is a UK site with best practice guidelines with Sarcoma treatment. Also there is a lot more evidence that chemo effective on synovial Sarcoma than other sarcomas, so just be careful What you read and that it is specific to SS. Here is a good USA site http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1899195
I think the issue is that they can only see what the scans are picking up. There may be more cancer in your body that is too small at this point in time. Is it operable? I would get another opinion -- it is always a good idea when you are dealing with such a rare cancer. -- You are not far from MD Anderson (Houson)...they would be a good center of execellence to take a second look.
Here is an article on the effectiveness of chemo, there are a few others about also if you look. http://jco.ascopubs.org/content/18/22/3794.long . Personally from all the stuff I read and info from my oncologists is that chemo was worthwhile. It’s not pleasant to go through but I believe it makes a difference.
My only convenient to this if you had a very low grade or small primary tumour. But you are talking of recurrence so I think you need to throw everything at it.
Thanks for the reply Nikolas. It is all very confusing at the minute and the decisions are difficult to take on board and make. Where is MD Anderson (Houson)? I have been advised that I can get a second opinion which is still an option. I had surgery to remove a sarcoma 2 years ago and they are reluctant to operate this time because it has come back in the same place and travelled to my neck. As you say about the small cancers, this is the problem currently because the 2 spots in my lungs are too small to be sure of.
Nikolas Ritschel said:
I think the issue is that they can only see what the scans are picking up. There may be more cancer in your body that is too small at this point in time. Is it operable? I would get another opinion -- it is always a good idea when you are dealing with such a rare cancer. -- You are not far from MD Anderson (Houson)...they would be a good center of execellence to take a second look.
Thanks for your reply Ellen. It is a worrying time. I have a scan booked in January to look at if it has grown within these 3 months so I will have more news then to make a firm decision.xx
Ellen said:
Oh my God! Now! Sarcoma is a nasty demon...do not trust it. It can sit there for a long time or hit you all of a sudden. Don't take that gamble. START TREATMENT NOW. Good luck.
Thanks Gary... Very confused at the moment so any information is a bonus.
Gary T said:
I would kick up a fuss, this doesn't sound right and consistent with advice I was given. Here is a UK site with best practice guidelines with Sarcoma treatment. Also there is a lot more evidence that chemo effective on synovial Sarcoma than other sarcomas, so just be careful What you read and that it is specific to SS. Here is a good USA site http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1899195
I have been told that there is only a 30% chance that the cancer will respond to the chemo so feel I have limited options. I will have a look through this thanks.. :O)
Gary T said:
Here is an article on the effectiveness of chemo, there are a few others about also if you look. http://jco.ascopubs.org/content/18/22/3794.long . Personally from all the stuff I read and info from my oncologists is that chemo was worthwhile. It's not pleasant to go through but I believe it makes a difference.
My only convenient to this if you had a very low grade or small primary tumour. But you are talking of recurrence so I think you need to throw everything at it.
Unfortunatly it is a tough cancer to beat and the %chance of in being highly effective may only be 30% effective. But that is great and far better than doing nothing and when you combine those odds with other procedures that gives you good hope.
Ive had chemo and still developed secondaries, but I still think chemo has been effective at slowing and knocking things back.
Good luck , don’t let the doctors boss you around and ensure they keep you informed and explain things, you have lots of rights. Sometimes decisions made are not based on best practice, and impacted by hospital schedules and ignorance.
Hey sorry.. I did not realize you were in the UK.. Houston maybe too far for you. Boston, MA -- Dana Farber -- see Dr. Jeffery Morgan. There are treatments that keep this thing at bay if it is not operable. Look into a treatment in Paris.. it is a phase 1, but it has been discussed on this blog. -- here it the email of the primary investigator. Email him and see where it takes you. Good Luck.. I will be praying for you!
Jean-Yves Blay. He is fine to have your direct contact.
His contact information is