I had synovial sarcoma in my left lower leg. Went to Dana Faber in Boston. I am in remission almost 4 years ! Prayers and support to everyone!
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What grade or stage it was at the initial diagnosis? Were you undergoing frequent scans?
Hope you’ll get better, prayers!
My 9 year old son was diagnosed with a non aggressive synovial sarcoma to his right arm/elbow in 2017. Prior to his diagnosis, he was complaining of mild pain to his elbow and within one year he was not able to hyperextend his right arm. I took him to the doctor for the sixth time and they kept telling me it was growing pains. I demanded to have a specialist look at it since his pediatrician would not order an MRI. I was referred to orthopedics and they were able to order the MRI. We had the MRI done at the end of June 2017 And within a few days, Ortho called me to inform me that my son had a very large mass in his elbow. It was approximately 36 mm so 3.6 cm. We had surgery in July to remove and we were able to obtain negative margins. The next year seemed promising and that all we had to do was continue doing CT scans as well as MRIs for five years. Within nine months, one of his CT scan showed another mass in the same area. We went into surgery again on October 2018. This time the mask came back positive for cancer and Positive margins. This time, the mass was on top of his brachial vein and brachial artery. Just last week my son underwent a bypass surgery and a graft from his right leg to replace into his right arm. Pathology results came back and it is negative again. Now we just have to finish three more rounds of chemo and some radiation to make sure this piece never comes back. My prayers are with each and everyone of you.
Ryan and/or Tierra San Nicolas
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So sorry to hear this about your son. Hope he’ll be better.
During initial diagnosis, didn’t they do radiation therapy or chemo? Was that not recommended?
Which hospital are you showing him? Hope it’s a sarcoma centre as its most important to see a sarcoma specialist.
No… they did not recommend chemo or radiation due to his negative margins. I wish they would have… Maybe his cancer would never have returned had they did chemo or radiation.
Ryan and/or Tierra San Nicolas
Hope your under consultation with sarcoma specialists, which is a must must thing…
Have they done a pet CT scan?
Now I am being followed by a specialist but previously we were not. Since I am a nurse at Kaiser, our insurance has to be Kaiser. But, on a good note, we were referred to the specialist at LAMC. That’s where his bypass surgery was done. Had I known everything I know now, my son would have been in a better place. It is very difficult because now we are doing everything we can so it never does return again. Yes he has had a PET SCAN. How often would you recommend him getting that done? He usually gets MRIs and CT scans every three months.
Ryan and/or Tierra San Nicolas
To be honest, I’m just glad that it has stayed localized to his arm and has not spread to his lungs or anywhere else in his body. I’m hoping it never does.
Ryan and/or Tierra San Nicolas
In my son’s case, it was grade 2 synovial sarcoma on his neck. Surgery and radiation therapy Completed July 2018. He is getting CT scan every three months so far all ok by God’s grace. I believe it’s a miracle that has happened to my child. His surgery was done with negative margin wide excision. In fact some drs said he should take chemo but not all. So we decided to not do chemo. He had 33 days of RT.
After next scan Dr suggests that he need only chest x-ray for the future.
I’m praying for you son as well.
Surgery to remove tumor lower “abd” 2004 then chemo 1/2005 .I did chemo just in case they missed something.so far clean scans .Had a CT of upper torso 11/2018 still clear . My chemo cocktail was M,A,I,D
I am 14 years out. Mine was wrapped in my femoral nerve in the joint between hip and femur. It was 10 CM.
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That’s a good news, and giving hope as well. What treatments you took at the time of your diagnosis? How often and what scans do you do now? At what age were you diagnosed?
Hello, how you’re doing. How’s health now? Have you competed your treatment?
Thank you! I had just turned 17 when I was diagnosed but started noticing symptoms at 16. I did 6 rounds of chemo with I believe 3 different kinds of chemo and some of the strongest I could be treated with. I can’t remember for the life of me what kind they were and I only have my records from my surgeon. I am going to try and get hold of my records from the oncologist so I can look this up cause I’ve been curious especially now that my husband is a physician. I no longer have regular scans but end having some kind of scan just about yearly because problems and things that pop up. I have a permanently fractured femur because of the radiation so I have a rod and screws. I have a lot of pain because of it and because of other things but I just had a Spinal Cord Stimulator implanted because of the intense nerve pain I get from the nerve dissection. From what I read in my doctors notes, I’m very very lucky that they could save my leg, let alone my life. Even though I’m this far out, I feel like a ticking time bomb.
Thanks for this details. Happy to know that you’re doing well though having some difficulties at times. My prayers for you.
It gives me great hope that this disease do have good result in many cases. Given the fact that your tumor size was 10cm, surgery and chemo have helped you recover completely.
Will the radiation have such side effects I wonder… Did you get it at that time itself or it was a late side effect?
My prayers for you… Take care and do keep in touch in this forum.
I really appreciate that. Thank you. It’s comforting to know there are others that have dealt with the same thing as me because for a very very long time I felt very alone in what I was dealing with as far as side effects and stuff. It’s a hard thing for people to understand. Even people like my husband who have a medical background but since he’s never been through anything close to this, he just can’t even comprehend the internal battles I have while trying to deal with the side effects that I’m still having this far out, and while trying to raise a family, especially raise a family while he was in medical school and residency. I walked on my broken leg for a year before they found out it was broken but I complained about my bone feeling like it was snapping in half for months. But since my husband was in Med school and we had kids, I had no choice but to power through. We also had found out years later, that my son is autistic but when he was younger, I felt like the way he was acting was because I was unable to take him out to play because I was in so much pain all the time. That was a really hard 4 years.
I wish I could say the side effects will get better but unfortunately for me, they’ve only been getting worse as I’ve been getting older. I have horrible problems with chronic nausea, bladder pain, all my muscles down the front of my leg and hip have atrophied, and I have no surface feeling. I have had many many days where I wished they weren’t able to have saved my leg because of how much pain I’m in but then I have days when I’m doing ok and I’m grateful I at least have a partially working leg. I try to keep a good perspective but also allow myself to mourn and be frustrated because it is important. I didn’t do that when I was going through it. I was always the girl with such an incredible outlook and so on, but when I was older, I went through some incredibly bad depression and anxiety where all that stuff I thought I was fine with, hit me like a ton of bricks. Thankfully I’m doing much better now and have a fantastic pain management doctor to help me.
I’m not sure where your located but I had incredible Doctors at Primary Childrens Hospital in Salt Lake City, UT. My surgeon is now retired but there is a doctor at the University of Utah who specializes in SS. But I just moved back to Utah from NY and my new Ortho Oncologist is fantastic! Her name is Jodie Miles with Intermountain Health Care in Murray Utah.
anybody needs help pls email me personoly i have some good personal views to handle with this rare cancer
Rk1 Thank you. what is your email address?
Hi! i see you have / had lung mets? My partner also has 7 lung mets being operated on tomorrow. Can i ask how many lung mets you had and how hiw were they treated? How are you doing now?