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Author Topic: Any osteosarcoma survivors in here?  (Read 204 times)

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Offline Florencia85

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Any osteosarcoma survivors in here?
« on: February 15, 2022, 10:03:46 PM »
Hello everyone. I had primary bone cancer in 2014 and underwent a brutal surgery called Limb sparing surgery to remove the diseased bone and redo my leg.
I never archieved a desirable range of motion and now my knee is stuck at 11 degrees and my prosthetic is loosening but can't find a surgeon to help me, not even for the revision to replace components of my endoprosthesis. I'm very sad and depressed and wanted to connect with people going through the same thing.
Self advocating is exhausting, I'm drained because of my long battle with the cancer and I expected to have healthcare professionals on my side at least.
Sorry for the rant.

Offline vickster

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Re: Any osteosarcoma survivors in here?
« Reply #1 on: February 15, 2022, 10:46:12 PM »
What country are you in?

If the UK, I believe there’s an osteosarcoma specialist centre at the RNOH in Stanmore, north of London. Might be worth reaching out to them via your GP (there are PDFs for referral forms in the link).
The RNOH also has a team of renowned knee surgeons more generally

https://www.rnoh.nhs.uk/services/sarcoma-unit

Is there a patient advocacy group for the condition that might be able to offer some help or support? Eg

https://sarcoma.org.uk/sarcoma-types/osteosarcoma
There’s information about other centres on the above site

Good luck  :)
« Last Edit: February 15, 2022, 10:52:41 PM by vickster »
Came off bike onto concrete 9/9/09 (lat meniscus, lat condyle defect)
LK scopes 8/2/10 & 16/12/10
RK scope 5/2/15 (menisectomy, Hoffa’s fat pad trim)
LK scope 10.1.19 medial meniscectomy, trochlea MFX
LK scope 19.4.21 MFX to both condyles & trochlea, patella cartilage shaved, viscoseal, depo-medrone