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Osteosarcoma - has anyone else been diagnosed?
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Courtney_J
Community managerGood advisor
@Daveacr Hello Daveacr, thank you for starting this discussion and sharing your diagnosis with us. How are you holding up? Dealing with a new diagnosis can be hard to handle, especially when it's a rare cancer. We have a thread in our cancer group where people are introducing themselves and sharing their diagnoses, feel free to introduce yourself! I'll link it here: What is your cancer diagnosis?
Let me tag some members who may be able to share their experience with bone cancer:
Hi everyone, how are you doing today? What has your experience been like with osteosarcoma? How were you diagnosed? What treatments have you tried? How are you doing today? Feel free to share here!
@Boneman @Jodi66 @tlzeman @AJF777 @1TufKid
Take care,
Courtney
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Courtney_J, Community Manager, Carenity US
1TufKid
@Daveacr my son was diagnosed 3 years ago. It is mostly a pediatric cancer, though it can be found in all ages. Please reach out to a group online - MIB Agents. It is all things Osteosarcoma.
My son’s tumor was caught quickly, but it was large. His tumor was in this tibia, distal end. We tried limb salvage for two years but he ultimately decided to amputate. He is now a BKA and living life again. The treatment was very intense but we are now on the other side of it. He lost considerable hearing, due to the treatment, and his heart is also weakened. We scan his lungs every 4 months and a full body scan annually to make sure it hasn’t spread to another bone.
Daveacr
Thanks
he sure is one tough kid
mine popped up in my sternum while doing my daily 100 push-ups. We thought it was a rib cartilage. It was just diagnosed 2 weeks ago. Pet scan says it’s localized in the sternum.. that was 4 days ago.. Get my port put in Thursday.. then chemo to try shrink it before surgery .. I’m 61 in 2 months.. I’m scared a lot ..
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Boneman
@Daveacr Hey man, I'm sorry you're going through that, it sure is scary. But you're going to get through it! I was diagnosed about 6 months ago. I'm a long distance biker and I thought I had bruised my leg or pulled something somehow. Went through all the scans to find out that it was a tumor in my tibia. I'm a few rounds into chemo and doing ok. It's been a ride for sure with the coronavirus going on.
1TufKid
@Daveacr I am so sorry you have joined the "club". Localized is good news. They will biopsy it and stage it. We found that Osteosarcoma is staged differently than other cancers, which was a little confusing to us at first. My son was a 2B (they skip 3). This was based on size and that fact that it had not spread. He had small spots in his lungs, which is very common with Osteosarcoma, but they turned out to be nothing.
Please know there is a community out here to support you. Check the Facebook groups for Osteosarcoma and MIB Agents. You will find knowledge, hope and support on these places.
Daveacr
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Daveacr
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Daveacr
61 year old guy , diagnosed 2 weeks ago with osteosarcoma.. bone cancer.. is there anyone else who has this?