After my knee replacement it took awhile to feel better but I have for a long time now about 16 years now and I’m having problems with my good knee but I think its just regular arthritis from the extra strain on it. And be careful with the pain meds I became addicted to them. Luckily I have 4 years clean but it was hard.
I swear our stories are similar! I had the knee pain in my left knee on the side and any kind of touch would be painful and sometimes I couldn’t walk for awhile. After multiple tests and specialists my pediatrician found it on an cray by chance. I was 12 and after the tumor removal I had 32 radiation treatments and a year and a half of chemo. I ended up with severe radiation burns and needed a muscle replacement and skin graft and about 16 years ago I had a total knee replacement. I have been cancer free for going on 30 years now.I was never really told the survival odds just that it was rare & only 2 other kids at Cincinnati children’s had it & I’m the only survivor. I have had some scars in the past but they turned out to be nothing or something else. I’m a little scared now hearing that your Dr said it can come back after 30 years because I thought I was in the clear but that just means I have to stay on top of my health. I hope you are doing well! Stay safe! Nikki
Hi everyone, I´m a young physician who was diagnosed 5 years ago during my medschool with SS poorly differentiated in my cervical spine, behind my throat, my treatment was 4 cycles of chemotherapy with doxorubicin and ifosfamide, then I had a big surgery (14 hours) to remove part of the posterior pharyngeal wall and replace it with a forearm free flap, after this 33 sessions of radiotherapy. I stayed always positive and sorround by my relatives love. My last thorax ct and neck MRI went clean. I also have to mention that alternative therapies like intravenous vitamin c mega dose, transfer factors, exercise and a rigorous diet help me stay strong during all the process.
Great, tats good you’re healthy today
How long you’ve to continue the follow-up? And what kind of follow-up you’ve? CT scans or x-ray?
Glad you are doing well. Hope you were able to continue on with your studies. I cannot even imagine them messing with my throat. ugggg It is amazing the strides they have made! Continue to look for the silver linings! I’m a 33 year survivor and still doing pretty good!
Good luck!
1 Like
Hi Catherine! Sorry it took me so long to answer. It is amazing how so many little parts of everybody’s stories are so familiar. I was diagnosed in 87 at 21. You fell on your bike, I fell down a flight of stone and metal steps. They mistook yours for a hernia, they mistook mine for a calcium deposit. Though it took them 6 months to come to that conclusion. At first I was told it was all in my head by 3 different doctors until they noticed they missed a shadow. Mine had grown to the size of a small grapefruit by then. I don’t know what grade it was because the doctors wouldn’t even tell me what was wrong. A pathologist came and told me. The doctor that did my first surgery spread it. The 2nd doctor wanted to amputate my leg but both my mom and me said NO. Eventually I will probably need a hip replacement, if they can do it. I have a metal rod holding my femur bone together so not sure. Hoping they come up with something by the time I do need one. In the meantime I use a crutch.
I have problems with lymphedema but not chronically. I do have a big difference between my 2 legs because they removed so much muscle but hey it is still attached.
I hope you are doing well. Take care!
Yes the follow up is mandatory the rest of my life, it will be by Chest CT and Neck MRI.
1 Like
It is very encouraging to read your testinomy and all the years you have been healthy.
1 Like