I am not doing amazing but ok. Finished my first cycle chemo on Friday. Mito I really appreciate you thinking of me . Chemo wasn’t easy as always. Nothing tastes good and I have some urinary infection. Otherwise all good. Hope everything is going good in your end. Cheers and prayers.
Hi! My name is Kimberly. I just wanted to reach out because I never thought I would hear about a case like mine. I never thought I would hear about another case like mine. I am 17 years NED. My femoral nerve, most of my quadricep, and lymph nodes were removed from my left leg. It spread to my lungs twice. My femur snapped in July 2016 due to the radiation damage. After a year of complications with a intramedullary nail, I received a proximal femur (hip and femur) implant. With all of that, I have to say I am doing great. Please stay healthy during this time.
I just read the whole thread. It sounds like you and I have a lot more in common with this. I hope this finds you doing well.
Wow! This is so inspiring. How many years NED since lung mets, Kimberly? Did you do VATS for each recurrence?
Congratulations to you both! You give us hope.
Great discussion here Thanks for sharing…
Hello! I also haven’t heard anyone with my situation, so it’s awesome to have someone who knows what it’s like. I wish I could say I was doing well. Last August I was getting a cortisone shot in my hip joint to help with the arthritis pain. Well it ended up getting infected and I was septic. It’s been a really tough recovery and my leg has gotten so much worse. I don’t have any cartilage left in my hip joint and on x rays it looks like my femur is fused to my hip, it’s so bad. We were trying to wait a year before we did surgery to do a hip and femur replacement but it started to get much worse then I can handle. I can put weight on it at all and my pain is horrific. If Covid wasn’t here, he would do the surgery to fix my leg but we can’t, do to everything going on. It’s been hard to try and take care of kids, puppies, and have an ER doctor husband that travels for work and is dealing with so much with covid. I’m hanging in there but barely. I meet with my Ortho again in a few weeks. I really
Hope I can get surgery in the next month or two. They are planning on doing a plate in my hip joint and then the nail fix. I’m hopeful it’s going to help so much and that I will hopefully be able to do more then I have in a long time.
How has it been for you since having your leg fixed? Have things gotten better? How was the recovery. Recovery from the femur surgery was so painful and hard but I did pretty well. I am a little scared of the recovery process but excited because there’s actually hope of it helping. I hope things are going well for you! Thanks for reaching out!
Hi I am a 33 year survivor of Synovial Cell Sarcoma. They told me it was a 2 for 1 special. Right thigh. I don’t know what grade. I was teaching Physical Education when my leg kept giving out on me. I had 3 doctors tell me it was all in my head until 1 day after I kept pressuring them they looked back at a CT and found a shadow they missed. I was then told it was a calcium deposit. By the time the school year ended and I had the surgery it was the size of a small grapefruit. They didn’t tell me I had cancer, though I was an adult and had signed myself in, instead they told everybody else. I didn’t know for 3 or 4 days until a pathologist came and told me. I told him I wanted to see it. It was like an m&m on the outside, dark hard shell. On the inside it was akin to chicken or turkey having soft meat like material with 1/2 of it light and 1/2 of it dark. I didn’t know at the time but by this doctor removing and touching other parts of the inside of my leg he spread it. I ended up at Shands in Gainesville, FL. where they did a radical resection and removed about 70% of my muscle. I had 31 consecutive RT and supposed to be 6 months to a year chemo but it messed with my heart too much and they took me off early.
Ten years later my femur broke in 2 spots. It took 4 years and 3 more surgeries to get me walking again and I have to walk with a crutch but hey it gets me around and still into trouble. I can relate to what DaniD is talking about now because I have a lot of problems with that leg. You can actually see the top of my femur bone there is barely any skin over it.
I haven’t had the cancer metastasize but ended up with another 2 for 1 special Ovarian Cancer. It was a 3 AB but somehow I got lucky again. I only had to have the surgery and I have been 15 years free of that one.
The main thing I am fighting now is skin cancer in the spot that had the radiation. I have had 7 removed last summer and expect a bunch more when this Corona is over. They said my skin underneath is shot so it is really hard to close them up. Prayers for all who has been through it and are still fighting it.
Hey Dani I had my knee replaced about 13 years ago and it has made my pain so much more manageable! I can actually take ibuprofen and it works.I have a job where I stand on my feet for 8 hours and I usually only have to take ibuprofen 800 mg twice a day.
Hello, I have been in remission for 32 years with synovial cell sarcoma. I had had pain in my left knee for a few years age 12-15. It hurt to press, rub against, tap on, etc. The pain got worse and I complained but they chalked it up to “growing pains”, like puberty, and thought I was only trying to get it of P.E. in high school. I was sent to P.T. and the pain only got worse. The physical therapist insisted that I go to his friend, a orthopedic surgeon who was the 49ers knee doctor, to get a 2nd opinion. He ran a MRI and found a mass tumor in my left knee…flat, oval, 7 com x 5 cm. The surgeon y told us that since it’s been hurting for years, having it was most likely present, that the chances for it to be malignant was like 1%. I had the a surgery to remove the tumor a couple months later. 6 days after my 1st surgery sometime called and told my parents, I was now just 16, that the pathologist said the tumor rad a very rare type of cancer. They did the reason it took so long to diagnosis was because they had never seen this so they sent a piece of it elsewhere for a better quality pathology report. I was sent to Stanford for follow up. Dr.Nagel was my Oncologist Surgeon and was straight to the point. This was in 1987. He said that it would be a radical surgery, 50% chance or more of amputation. He said after the surgery my odds were 15% of living 1 year, 35% chance of 5 years, 66% chance of 10. He said after that, if I made 10 it’s usually in remission or your dead, but he said those who have lived have had reoccurrence after 20-30 years and they really didn’t have much info after that because it’s so rare and no one really has made it that long. He was a fabulous doctor but I sure didn’t like the odds. Had surgery, margins cleared, took out muscle, nerves, tendons, etc. Had a mint skinny leg now but no amputation. I had 8 weeks of heavy radiation, no chemotherapy (was told it was 50/50 on these and I opted out), had some bone marrow test, some test that is nuclear and they slice the top of your feet, big needles inserted and shoot nuclear fluid into your body. Scary, it’s like isolation, they wear big nuclear protection. Not sure what its called. Lots of blood work, chest scans and all that steadily for a few years. Then just 1, if that, regular health follow ups. A few scares through out the years with lumps and bumps. The area that rad radiated is damaged these days and I need to wear a protective bandage so I dont get scratches. I had a tiny scratch that turned into a huge sore/hole in my left thigh inside above knee. I went to a wound specialist because it was di infected and painful. They took a biopsy which I figured it was for strep or something. They called me and did they thought it was angiosarcoma, another rare sarcoma but were sending it for another opinion. I waited a week. And you all probably know how terrifying that is. Just awful. I thought, OMG…after 31 years? Oh snap. Worse week ever but so incredibly happy to say it was not angiosarcoma. Yeah! But having that fear was somehow so more terrifying than our seemed when I was 16. Anyway, point of story…longest synovial cell sarcoma…me 32 years remission. Hang in there, especially which this Covid-19 situation. I used mental health like visualization and will to stay cancer free. Just on another note… when I was 16 and giving my odds, I decided to travel and see the world. When I was 19 I became a Flight Attendant for have done just that…seen the world and made a family with Delta Air Lines. I also have a 14 year old son. So, you can have a great life and so go live out your dreams! Thank you for reading. Maybe I inspired someone. Feel free to contact me I’d you need support or have questions. Love to all my sarcoma family. Jenny
OMG! You are the first other person that I have heard of with Synovial Cell Sarcoma and we both apparently had it in 1987! They also talked about amputation during the surgery and they said I sat straight up and yelled at them. Hell no your not taking my leg! They went out and talked to my mom and she told them to try to save it. They didn’t tell me any odds but they did say that everything they were going to do was experimental. They never did a bone marrow test or the nuclear test on me and I have still never had a PET scan. Yes I have had scares throughout the years and as I mentioned above I also had a rare Ovarian cancer in 2005 but it had nothing to do with the S C Sarcoma. My bones did deteriorate in the leg that had the cancer and I have had 3 surgeries with rods installed and bone grafts. It took 4 years, a titanium rod and a fibula bone transplant to get me going again but I am still here, still causing trouble and trying what I can of new things in my small town. I would have loved to travel but didn’t have the means. Glad you got to. Stay safe!
I was diagnosed in 1990 as an 8 year old. It was by pure fluke that my Synovial Cell Sarcoma was diagnosed. I fell off of a bicycle and hit my groin on the bar of a mountain bike. All of the physicians thought I had an inguinal hernia however, it kept growing and growing. By the time they went in to surgically “repair” the so called hernia it had quadrupled in size in a time period of 3 weeks. Needless to say that surgery incorporated not only an extended surgery an immediate referral to Children’s Hospital of Philadelphia as they knew immediately it was a malignancy just not sure what type.
Well the story definitely doesnt end there. This situation was scary for all involved because as CHOP was doing the complete work up of this malignancy, they could not find the remainder of the tumor (which was described to them as large). It was hiding underneath the organs in my pelvic and abdominal cavities. About 3 weeks went by and they finally found it and were able to surgically resect the tumor after they had an official diagnosis and a surgeon ready for the gigantic surgery that would happen. A full day of surgery occurred and they advised my parents there was a 90% chance I was going to lose my leg however, they were able to save it. They also gave us the news that I had stage 4 Synovial Cell Sarcoma and they were giving me 6-8 weeks for survival however it is now 30 years later — As I tell doctors I am here to torture them and keep them on their toes as my body beats to its own drum.
In the saving process they advised that I was going to need a hip replacement by the time I was 18 years old. Lucky for me, my hip replacement did not need to happen until I was 31 years old an orthopedic oncologist did the surgery since he understood the concept of a fully radiated field – although he said he never saw as much radiation damage that he saw before.
Post surgical resection I received 14,000 rads of radiation to one body part – doctors said this was the only way to save my life as they had prior cases that chemotherapy did not work for. Therefore, I was max radiated for an adult at the age of 8 years old. As a result of this radiation treatment, I developed chronic lymphedema in my entire left lower extremity within 4 weeks of completing radiation therapy. I have lived my entire life basically with chronic lymphedema; however, recently was able to have a triple lymphatic transplant coupled with a double lymphatic bypass and I went from having a leg that was 60+% larger than my unaffected side to 10% difference between my 2 legs.
Catherine, a belated welcome to our community. What a story you have! I cannot imagine what it must be like to have a medical experience like the one you had at the tender age of eight, not to mention the ongoing issues that it has left you with.
Still, you sound positive and optimistic, with 29 cancer-free years behind you. Congratulations, and best wishes for many more!
Your post would make a great introduction to the community. Why not copy and paste it into a new self-introduction post? There might even be a few more welcomes pop up as a result.
All the best to you
Seenie from ModSupport
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!
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.
It is very encouraging to read your testinomy and all the years you have been healthy.