My 15 year old son was diagnosed with synovial sarcoma about one month ago. the sarcoma was at his left knee and was about 5cm. He has had two surgeries at this point and is scheduled for another one on July 6th. The last surgery was a major surgery taking a large portion of his leg muscle. They found that they did not get all of the tumor and that is why he has to get more surgery. they have talked about him losing his leg. We are in Las Vegas and think we have very good doctors. they found this when doctors in California missed it for over three years. I am looking for advise on treatment and for any attorney that can deal with an action against the doctors that missed this
Dan, I feel your pain and I’m truly sorry that your son is undergoing the emotional trauma of cancer at such a young age. But do not give up hope. Like your son, I had a tumor as a teenager, which multiple doctors told my parents not to have removed due to its location to a nerve. It was in my elbow for 13 years prior to having it removed at age 31. Once removed, they still did not understand it was cancer. (Synovial sarcoma is a rare cancer only 800 to 1000 cases diagnosed a year in the US) After the surgery, my lymph node system had not bounced back and fluid pooled in the space of the tumor. I believed the tumor was back and at that point my surgeon sent the tumor out and it was diagnosed as synovial sarcoma.
To make a long story short, 30 years after those first words were spoken, I’m still here fighting. My treatments included the initial two surgeries, Brachy therapy, radiation, 3 lung surgeries and chemo (which was not effective). I’ve been told that my course of treatment was unusual and that synovial sarcoma’s course of treatment was not typically surgical. Mine just grew in places where it could be removed. I always opted for aggressive treatment and sought second opinions.
I’m currently being treated with Votrient/Pazopanib. An inhibitor that stops the growth of the cancer is 49% of patients. It was approved by the FDA in the beginning of May, the first new drug approved for sarcomas since the 1970’s.
At one point my doctors stopped sending me for chest scans after 10 years of remission and said I was cured. Even when cancer is removed, it can still return and no one can predict its course.
Whatever you do, don't let them amputate that leg. My husband had a 9cm tumor in his leg in 2006 and they put a metal rod in it, in 2009 we found that the cancer had returned and they amputated. We didn't know that at that time, that this surgery would not prevent it from coming back into his lungs. So now he suffers with an amputated leg and synovial sarcoma in his lungs. So always keep to the smallest surgery necessary to remove the tumor. More than likely your first doctors didn't miss it, it just grew back like my husband's did. Also request radiation after tumor removal, we didn't and I think it contributed to the regrowth. Most of the synovial sarcomas are a genetic disorder. Have your son's dna tested and contributed to the synovial database so that the medical community of synvovial sarcoma studies can do more to learn about this disease. Good luck.
It took a year to find Paul's tumor. Also removed from the back of his knee. Its a rare cancer and very hard to find since it's in the soft tissue. Paul's been fighting this since 2008, still doing chemo to this day. The ended up amputating his leg after it reoccurred last year in the same area even though when they did surgery the first time there it came back clean? We just moved to FL but he was doing his treatments at Stanford in Ca. Now were at Moffitt in Tampa. I wish you luck and our thoughts and prayers for your son and your family.
My husband is trying panzopanib, it's a one a day pill and has had one side effect it makes him grumpier than hell, but that is it so far. He has the sarcoma in his lungs now. It's his last option in keeping them smallor irradicating them all together. Have to wait another month to see if it has made any progress. It has just recently been approved by the FDA for this cancer. I think it is so much easier on my husband's body than all that other stuff which rotted out his teeth and ruined his blood vessels and arteries. Ask for it.
I think it's very important to see an oncologist that specializes in synovial sarcoma. I live in Florida and travel to New York for my treatments and follow up. At least get a second opinion. I'm a patient at Memoial Sloan-Kettering Cancer Center, if there's anything I can do to help please let me know
Yes make sure the hospital your getting your treatments has a sarcoma clinic. Otherwise your just a Ginny pig to them and you want to make sure they know what they are talking about. They are talking about sending Paul up to Maryland to do a trial up there, cant think of the name but has something to do with training your immunity to attack the tumors.
It's very important for the surgeon to get clear margins. Sometimes amputation is not avoidable. It depends what nerves and major blood vessels are involved. Do they intend to do any treatment prior to surgery to improve the chances to get clear margins? Radiation or chemo can sometimes help. I know of somebody who avoided amputation thanks to ILP (isolated limb perfusion). You may want to look into it:
I've never heard of the Rick Simpson oil. But there are alot of trials out now, just get in touch with Sloan-Kettering or M.D. Anderson or Dana Farber they have a wealth of information
was your current treatment started due to positive findings on a scan? jimK said:
Dan, I feel your pain and I’m truly sorry that your son is undergoing the emotional trauma of cancer at such a young age. But do not give up hope. Like your son, I had a tumor as a teenager, which multiple doctors told my parents not to have removed due to its location to a nerve. It was in my elbow for 13 years prior to having it removed at age 31. Once removed, they still did not understand it was cancer. (Synovial sarcoma is a rare cancer only 800 to 1000 cases diagnosed a year in the US) After the surgery, my lymph node system had not bounced back and fluid pooled in the space of the tumor. I believed the tumor was back and at that point my surgeon sent the tumor out and it was diagnosed as synovial sarcoma.
To make a long story short, 30 years after those first words were spoken, I’m still here fighting. My treatments included the initial two surgeries, Brachy therapy, radiation, 3 lung surgeries and chemo (which was not effective). I’ve been told that my course of treatment was unusual and that synovial sarcoma’s course of treatment was not typically surgical. Mine just grew in places where it could be removed. I always opted for aggressive treatment and sought second opinions.
I’m currently being treated with Votrient/Pazopanib. An inhibitor that stops the growth of the cancer is 49% of patients. It was approved by the FDA in the beginning of May, the first new drug approved for sarcomas since the 1970’s.
At one point my doctors stopped sending me for chest scans after 10 years of remission and said I was cured. Even when cancer is removed, it can still return and no one can predict its course.
Yes - 5 small nodules. One in lung area that received radiation, 3 in lymph nodes in the chest wall, and lower back between lungs and ribs. Largest is 2.8CM - smallest 1CM. Let's hope the new drugs stop and shrink what's there.
jaysdad said:
was your current treatment started due to positive findings on a scan? jimK said:
Dan, I feel your pain and I’m truly sorry that your son is undergoing the emotional trauma of cancer at such a young age. But do not give up hope. Like your son, I had a tumor as a teenager, which multiple doctors told my parents not to have removed due to its location to a nerve. It was in my elbow for 13 years prior to having it removed at age 31. Once removed, they still did not understand it was cancer. (Synovial sarcoma is a rare cancer only 800 to 1000 cases diagnosed a year in the US) After the surgery, my lymph node system had not bounced back and fluid pooled in the space of the tumor. I believed the tumor was back and at that point my surgeon sent the tumor out and it was diagnosed as synovial sarcoma.
To make a long story short, 30 years after those first words were spoken, I’m still here fighting. My treatments included the initial two surgeries, Brachy therapy, radiation, 3 lung surgeries and chemo (which was not effective). I’ve been told that my course of treatment was unusual and that synovial sarcoma’s course of treatment was not typically surgical. Mine just grew in places where it could be removed. I always opted for aggressive treatment and sought second opinions.
I’m currently being treated with Votrient/Pazopanib. An inhibitor that stops the growth of the cancer is 49% of patients. It was approved by the FDA in the beginning of May, the first new drug approved for sarcomas since the 1970’s.
At one point my doctors stopped sending me for chest scans after 10 years of remission and said I was cured. Even when cancer is removed, it can still return and no one can predict its course.
Our thoughts are with you and we know how difficult this is for you. As others have mentioned if doctors have not already looked at radiation as an option please suggest they do - even if it is followed by surgery again. Especially since there has already been surgery in the area. Depending on the location of the tumor (close to bone for eg) it may be difficult with surgery alone to get it all. Do you have a sarcoma team reviewing your son's case? Stay strong and please stay in touch.