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Need others' experiences with limb salvaging procedures for osteosarcoma

Posts: 2
Joined: May 2011

My 9 year old daughter was diagnosed with osteogenic sarcoma in March 2011. She is currently in her 6th week of treatment. Surgery is scheduled for week 11. Her orthopedic oncologist is suggesting the expandable prosthesis. We have not yet had our in-depth meeting to discuss options.

I was hoping to get other's experiences with this surgery and what your outcomes have been. Have you had several hospitalizations? Complications? Limited mobility? Are there other suggestions you may have?

Any information will be greatly appreciated!

Thank you!

Posts: 1
Joined: Jun 2011

Hi. my name is Sachin, from South Africa, currently residing in a very nice country, Brunei. I'm a cancer survivor like most of the members on this site i stumbled upon. I too had Osteosarcoma in 2006 when I was 10. tumor occured in my right knee and upper tibia. Taking into consideration that your post was in May, I presume your daughter has had the operation already? if so, please do share any insight as to how it went.

I had my operation in May of that of year. I remember falling in and out of consciousness because my anesthetic was so strong. I will not lie to you, the pain is intense. but, once over, you'll look back and say it was totally worth it. :) I unfortunately have no feeling in my foot as well as a drop foot in which i do not the motion of lifting up my foot. due to that, i wear a brace, everyday. although they did save my leg and i now have a expandable prosthesis, my nerves were too damaged to recover, and so i have very little feeling in my foot. also, the growth in just that foot stopped right after the operation. I am now a size 12 with one foot the size of a 11 year olds foot. funny when you think about it. :) haha

you're daughter may need time to recover, possibly alot of time. not to mention extensive physiotherapy.After the operation i have had two extentions, one one year later and the other in 2009. I may need another as i am only 16 at the moment and still growing. this for me, seems the only complication. the drop foot and little feeling is nothing comnpared to having just your real leg still there every morning. Your daughter need not be scared of the extensions, they're far smaller operations than what she has just had.

After some time she will get used to the prosthesis, and will function just as any other girl. :) i missed out a whole year of schooling, but i still managed to get pushed up a year when i went back. i ended up being headboy of my school. just goes to show, anything is possible. :)

motivation is key Mrs. i remember i used to imagine i was playing this video game in my head, and every cycle of chemo, i was entering a new level and fighting these cancer cells. it sounds silly but it helped me get through.

just let your daughter know she's not alone in this. theres lots of children around the world going through exactly the same thing, even though Osteosarcoma is listed as one of the rarest cancers. your daughter will make it through, I know she will. hang in there. once its over, your daughter will feel like she could touch the sky, do anything. I would know, i felt exactly that. haha

I know I'm only 16 and that may seem discouraging to ask any questions, but please do. I know what its like, when i was 10 i couldnt explain it, now i can. if you have any other questions, just email me. :) sachin3005@hotmail.com

its a long read but i hope i have been of some help to you. Take care. your daughter will be in my prayers. :)

Posts: 25
Joined: Dec 2004

I am a 13 year osteosarcoma survivor! I was 15 when I found out I had a tumor right below my left knee and tibia. I had limb salvage surgery. I too experianced the drop foot after all 3 of my knee replacements but mine went away after physical therapy. I know this was almost a year ago but would love to talk about my journey.

Posts: 2
Joined: Mar 2012

and could u give the doctor's name?

Posts: 2
Joined: May 2015

What did you decide to do? We are in the same circumstance!

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