I am new to this group. Today, my son had a biopsy of a soft tissue mass on his right medial knee and his doctor informed us that it is synovial sarcoma. The mass is approx 4.8cm (per MRI) and the doctor said it was grey. We are waiting for the official pathology report for staging and grading, (expected within 5 days), but his doctor took it to the path lab and looked at the sample under the microscope while my son was still in surgery today and confirmed that it is SS. He has already contacted an oncologist on our behalf, and he said that they will be in contact to schedule CT of chest, PET scan, etc in the coming days.
I am of course worried, and praying that it has not metastasized. We live in Atlanta. I have read that St Jude’s, Memorial Sloan Kettering, and Dana Farber/Boston Children’s are specialists in treating pediatric SS. Any info, Doctor’s, or facilities that anyone can recommend would help us greatly. I just want him to be able to beat this and be healthy.
Thank you for reading this and please share any information that may be helpful. I appreciate your help/advice and support.
Hi, sorry this has happened to your son. I am 14 and was diagnosed with
synovial sarcoma above the right knee a few months ago. Regarding treatment
of the cancer, if you have to have the cancer removed by removing the leg,
i would really recommed a rotationplasty. If your doctor or surgeon hasn’t
said anything about this then you should ask them if they can do it. The
reason i recommed it is becuase as long as your son and you are ok with the
appearance, he’s going to technically have a fully functional knee (after
alot of hard work of course ) since your son is 9 and still has his whole
life ahead of him, if you go for an option like Limb Salvage or full
amputation of the leg, your son wont be able to run as well or compete in
sports as well as he could if he got a rotationplasty. I myself have had a
rotationplasty procedure done and it is definitely the best decision ive
made in my life. Just thought i’d share this with you, good luck and i hope
everything goes well with your son
Hello! Less than 5cm is generally good news with SS! I know it’s very scary, and I am so sorry you are going through this. My son was 16 at diagnosis. Please join the FB group Sarcoma Alliance and check their website for a list of Sarcoma Centers. Dana Farber, Memorial Sloan Kettering, MD Anderson, Moffitt, etc are all good choices. I’d pick any Sarcoma Center on that list!! Sometimes if the tumor is less than 5cm, they don’t do chemo and can do limb salvage surgery. Other times they still do chemo. Best of luck to you and your son! <3
I’m so sorry to hear about your son. It is so scary! I was terrified when my daughter was diagnosed 1 1/2 years ago when she was 12. Today she had her 1 year scans and is still cancer free! We are very grateful.
Some things I learned.
There is a lot of support for you and your family. Groups like this, sarcoma alliance, synovial sarcoma survivors, momcology (they all have Facebook), Imermans Angels have 1 on 1 support where they pair any of your family members with someone who has been there (I relied heavily on my mentor Angel), and groups that offer financial support that your social worker can recommend.
2. Whoever your oncologist is, make sure they are part of the Children’s Oncology Group. There is a standard protocol for pediatrics that most follow. If your son receives chemo he should be able to stay local (which means a lot), as long as they are part of the group.
3. If your son is to receive radiation, look into proton therapy. He probably won’t since it’s under 5cm but depending on how easy it is to remove, they may want to try to shrink it with radiation.
4. This brings me to the most important part of synovial sarcoma. I have heard it referred to as a surgical cancer. This means that it is best treated with surgery. Your surgeons skill is the best indicator of successful removal. Don’t hesitate to look around, ask questions and get second opinions. I got a second opinion for everything. Luckily they all agreed and I was able to stay local for everything. This helped my daughter as her support was here and she thrived by having people visit her in the hospital. Don’t be worried about asking lots of questions. This is your child.
Breathe, take one step at a time and ask for help. Your friends and family will want to help you.
Feel free to ask me any questions anytime!
Hugs to you and your family,
The Children’s Healthcare of Atlanta has a sarcoma program:
I believe they are part of the Children’s Oncology Group and they do a lot of research on sarcoma. I would start with them if I was you. It’s easier to be treated close to home. You can always get a second opinion somewhere else to confirm treatment options…
Thank you for your response. Yes, he had his MRI and biopsy done at CHOA. However, I am concerned about using CHOA because they aren’t listed as a sarcoma center on any of the “sarcoma center” lists. The only sarcoma center near us that pops on up on any of the sarcoma center searches is Emory Winship Cancer center. I’m worried that if we don’t go to a specialized center he is going to be In essence, a test rat. I want to find the most experienced doctor’s, sarcoma center, and team to help him.
It sounds like Dana Farber/Boston’s children and MD Anderson are both top notch from my research and reading other’s comments here. At what point should one reach out for second opinions? Do we need to have all of these tests back first? We still haven’t had PET, CT of lungs, lymph node and marrow biopsy, bone scan, etc. We only know that it is definitely synovial sarcoma have the size based on MRI. It feels like we are sitting at home knowing our child has cancer and doing nothing. Our doctor said we would have these tests in the coming week (weeks?). I’m so scared that it’s spreading, and we are all just sitting around here doing nothing. I know that’s not exactly what’s happening, but I just want everything to get moving so we have more information and can make a plan.
One issue with the sarcoma center lists is that they were made for adults in mind. CHOA is specialized in pediatrics not adults. But their researchers are part of Emory University so I am assuming Emory Winship Cancer Center is for adults and CHOA for children.
MD Anderson has a synovial sarcoma survivor as their head of pediatrics: http://faculty.mdanderson.org/Richard_Gorlick/Default.asp
I don’t know if you can get an appointment with him specifically but that could be an inspiration for your son as an added benefit…
We have an appt to meet with Dr. Bradley George at CHOA on Friday, and we are scheduled to meet with Dr. Najat Daw at MD Anderson on Tuesday. Does anyone have any experience or know of anything positive or negative about either of these oncologists? At MD Anderson they want us to stay for 4-5 days to get all of the further testing done. Is it a good idea to get it done there vs CHOA? Both are part of COG, correct?
Did MD Anderson mention what type of testing they would be doing? It’s possible that they are better equipped for some type of testing in pathology for example… You should be open to them about the fact you’re getting 2 opinions so the tests are not done twice if not necessary and they can share their findings.
They did not mention what testing they would be doing. They said we will discuss that with Dr. Daw on Tuesday and that we needed to stay in town 4-5 days for the testing. MD Anderson is requesting the path sample from the biopsy once they are finished with it here in Atlanta. They said they will do their own pathology on it. We are going to be 100% open with the CHOA Dr on Friday that we are going to meet with the doctors at MD Anderson and have his testing done there. We aren’t planning to do any of the testing in Atlanta unless something drastic changes. I figured that we need to have contacts both here at home and at MD Anderson if we choose to have them handle his care. I’ve read they can oftentimes handle some treatments here and some out there. Does anyone have experience with treatments at home and at an out of town center?
It sounds like a good plan. MD Anderson is used to see patients who come for a 2nd opinion. They don’t necessarily take over treatment and sometimes they just give recommendations.
Good luck to your son!
We received the molecular diagnostics report and pathology today. It is Biphasic Synovial Sarcoma. It has the SYT-SSX 1 Fusion. Our doctors in Atlanta didn’t seem to know what that meant, but I have been reading a lot of medical literature so I knew what to look for on this report. I did not have confidence in the oncologist that we met with today. They have only treated 1 other pediatric synovial sarcoma case. I don’t feel good about that at all, nor do I feel good about several of the answers he gave us/his recommended treatment plan. He said they already know that they are not going to be able to get clear margins because of where it is located. He said many times that they don’t get clear margins with solid tumors on pediatric patients. So his plan would be take it out, knowing they can’t get margins and then just watch and see. No chemo, no radiation, nothing. Just leave cancer cells behind and wait and see if/when it recurs or metastasizes. That sounds like a horrible plan to me. I asked him what happens when it comes back (as SS typically does when there aren’t clear margins), and I told him that I am not comfortable playing roulette with my son. I also pointed out the fact that a recurrence lowers the 5 year survival rate significantly. He said “they don’t always recur and we need to weigh the risk of treatment against the risk of recurrence” (which from my understanding the risk of recurrence isn’t one to dismiss when there are positive margins). They also haven’t staged my son yet. They said they would call us in the next 2 weeks to set up a PET and a chest and pelvic CT. The reason its taking so long? He said “SS is a very slow growing cancer that is not very aggressive”. That’s not exactly in line with what else we’ve read - I’ve read that it is actually a more aggressive sarcoma. We will be getting the tests done at MD Anderson next week anyways, so it’s neither here nor there, just frustrating that the oncologist doesn’t seem to know what type of cancer he’s dealing with.
I am praying that the Dr. at MD Anderson will be more knowledgeable.
His plan sounds horrible to me too He takes the whole situation much too lightly. It’s unfortunate. It is so much easier to be treated close to home
Good luck with your appointment at MD Anderson! If you are still not comfortable with what they have to offer, you can always get a third opinion…
I am currently in the hospital for surgery to remove Synovial Sarcoma from my thigh. My original biopsy showed it is aggressive. They did 25 sessions of radiation which was a price of cake and scans showed the tumor shrunk 50%. When the doctor removed it he said it had actually shrunk/ died much more than that and we got clean margins. Everyone has a different case but for SURE get a second opinion and don’t feel bad about it- my doctor welcomes another opinion and thinks all doctors should❤️❤️❤️
Update: We are still in the process of staging. Abdominal and pelvic CT with contrast is today. The chest CT did show a nonspecific 5mm solid parenchymal nodule in his right lung. They said they just want to watch it. Doesn’t it seem important to know if it could be a metastases prior to developing the treatment plan?
Currently the plan at MD Anderson is very concerning as well. Their doctors measured his tumor at 4.91 x 3.6 x 1.7, so again because it’s not 5 cm (even though it’s less than 1mm from being 5cm) they don’t want to do chemo. Because of where the tumor is in his knee the ortho onc said he will have to take out his MCL, create a new MCL by taking part of his calf muscle, hollow out the knee capsule, do a complete knee reconstruction, graft skin from his thigh to close it, have a plastic surgeon help make it all look okay, and the radiation oncologist will place brachytherapy for internal radiation. The surgery will be very intense and take 6+ hours. He will be in the hospital for quite a while following. Even with all of this they still know they won’t get margins, which is why they want to do the brachytherapy as well. The damage they do to his growth plates in the upper and lower leg during surgery and after radiation will likely prevent his leg from growing. They will also probably have to do multiple surgeries down the road because of the wear on the knee joint. He would then eventually need a knee replacement. The solution for one leg not growing and the other growing normally is that they can intentionally prevent the other leg from growing through surgery and radiating the healthy leg growth plates too. He’s only 9 right now and hasn’t begun puberty. My husband is 6’2, so he’s not going to be a small person - he’s built just like his dad. I’m very concerned about his quality of life with this plan.
Honestly it makes me think amputation might be better for him vs. leaving positive margins, radiating possibly both legs (and increasing the possibility of thyroid cancer), and still setting him up for lifelong joint pain (which they told us he will have) and multiple surgeries. Then after all of that, what if this lung nodule ends up being a met? Then he’d need chemo regardless. I really don’t understand why they wouldn’t want to try to shrink the tumor prior to surgery, and further, why they wouldn’t want to give chemo in this situation anyways when his tumor is so close to 5cm? Do doctors strictly consider length? What about total tumor volume? This COG study they get the protocol from only had 44 synovial sarcoma kids under 9. That’s hardly enough to make a finite determination. Shouldn’t they use common sense and look at patients on a case by case basis? What about personalizing treatment to the specific case - do docs ever do that?
Does this plan they developed sound like it would work? What would you do if it was you/your child?
Does anyone know of a non-COG sarcoma center? Maybe that’s what we need?
Synovial sarcoma is more common in adolescent and young adults than in children. For that reason, I doubt you could find a non-COG hospital with experience in pediatric sarcoma.
Historically, children with synovial sarcoma were treated with chemotherapy because they were mixed with rhabdomyosarcoma patients in studies. Rhabdomyosarcoma which is much more common in children, is also known to require chemotherapy. Recently, with all the progress in molecular biology, the question arose whether it made sense to mix synovial sarcoma patients with rhadbomyosarcoma patients and whether chemotherapy was really necessary or even detrimental. Besides the fact that chemotherapy can have long term side effects like raising the chance of having a secondary cancer, brain difficulties, and so on, it’s not known whether chemotherapy may actually render synovial sarcoma more aggressive. If you have a case of aggressive synovial sarcoma, you don’t ask the question but if you think you have an indolent tumor, then the question makes sense. Studies have shown that synovial sarcoma tends to be more aggressive in older patients, for example:
And older patients tend to have more mutations and more mutations seems to imply more aggressive tumors:
May chemo cause additional mutations? There’s now a fear of overtreating… So treatment trend has changed and only the future will confirm whether the new trend is appropriate.
There are some suggestions already that it is:
Note that in this study, nobody had metastatic recurrences.
It looks like both centers think your son has an excellent prognosis despite the predicted resection difficulty and the chest nodule.
I would have the same concerns as you do though. I met a lady who had Ewing’s sarcoma in the 1970’s as a child and had radiotherapy as part of her treatment. Her leg failed to grow and her medical team did some procedure to prevent her other leg from growing. She kept experiencing issues due to late effects of radiation (like broken bones, infections). Eventually she developed a life threatening infection and had to get an amputation. So now, she has a short leg and another with a prosthetic leg. Of course, she regrets not having had an amputation right from the start… Her case is a bit different though because her sarcoma was in the bone.
It’s important to express your concerns to the medical team. Sometimes, they may offer a complicated plan to save a leg thinking that the patient would never agree to an amputation. Sometimes they describe a worse case scenario even if they are confident the chances are low to get that bad. Sometimes they will modify the plan if they know about your concerns…
Finding a lung nodule at staging is not uncommon and most are benign:
I had one. It never grew and it was removed in one of my lung surgeries with others that were malignant.
Thank you for sharing these studies. I had not seen several of them. You make some very good points that need to be considered. I will read through these prior to our appts at MD Anderson tomorrow. I really appreciate your input and the research. Thank you!
I also found a phase II/III trial that I think my son could qualify for. It is for patients with certain soft-tissue sarcomas (Synovial included) that haven’t received treatment and have a resectable tumor. The trial is testing the use of the targeted therapy drug pazopanib (Votrient) prior to surgical resection. I know this has been used in stage 4 patients with good results, so I spoke to one of the docs about referring us. He thought it would be a good fit and was going to check to see if that arm of the trial is still open. I was going to discuss it more in depth with them tomorrow.
Do you have any opinions on clinical trials or this one in specific?
Pazopanib scares me to be honest with you. And here is why:
Votrient is an angiogenesis inhibitor and it did show good results in stage 4 patients but you won’t know if it has an effect on promoting metastases until you try it on patients without mets. I wouldn’t want my son to be the one who tries it…