Jill’s Story

Fibrous Dysplasic Osteosarcoma at the Fibula
Age at Diagnosis: 35
Year of Diagnosis: 1991
Location: United Kingdom

Diagnosis: I had the original diagnosis of low grade central osteosarcoma in 1991 (I have had three recurrences since that time and my journey continues). I had a bad fall on the base of my back whilst carrying loads of files from work (nothing new there!). I prolapsed three discs and completely straightened out my spine! I was referred to the local Orthopaedic Doctor, who arranged the usual barrage of x-rays, including some of my knee as I had complained of an ache in the knee joint since the fall. A five inch Tumour showed on the x-ray, at the head of the fibula, which was a bit of a shock, to say he least..and so my journey began!!

Treatment and Recurrence: In some ways I am fortunate that my cancer is Low Grade, it is treated by wide resection surgery to remove the bone and a good margin of healthy tissue around it. Usually, besides nerve damage and weakness due to atrophy in the surrounding muscles, the overall post operative symptoms are pretty minor…that is if you do it once. As I am on fourth time the damage has been greater and the rehab slower. It took a whole two months to diagnose my cancer originally, as it is often mistaken for varying forms of benign lesion. Most of the Fibula has now been removed after three successive surgeries in the same area. My last operation opened up the whole area as several ‘micro-mets’ had formed away from the bone, and had settled in the soft tissue and calf muscle. My consultant had to have a really good dig around along the length of my leg to get all the ‘bits’ out. I have got a lot of residual damage, having lost about a third of my calf muscle and the perrenial nerve was cut so I have no feeling in my foot and it flops around like a newly caught fish!!

Recovery: To date I have had no adjuvant treatment, but I am now (at the time of writing my story) awaiting my Histology reports. Pending those results it is likely in an effort to stop any further recurrence, that a course of High dose Radiotherapy each day for six weeks will follow. Following my Histology/Radiotherapy treatment I am looking at rehab over a period of months/years?? Water Therapy is an option I would like to try…water is so supportive, and I am not so likely to fall over (something I make a habit of!!) Nerve pain is an issue at the moment as the minor nerves start to fire up, but generally the biggest challenge is to walk with little or no sensation in my lower leg and a foot that won’t do as it is told!!!

Life Now: I plan to do several things after my treatment finishes: Sky-Dive for my local Cancer Charity (My Second!!,) White Water Rafting with Mary and Charlene when I come over to the States later this year (sorry Guys, you gotta do it now!!), and have a long and glorious life enjoying my Family and Grandchildren!! I cannot teach Tae-kwon-do Karate anymore… I fall over when I kick!!! I am looking to finding something else though, that is just as much fun..but maybe a little bit more sedate!

Thoughts and Hints for New Patients: Deal with what you KNOW, and not what you FEAR. Laugh whenever possible..it really is the best medicine you can have, and be positive. Share all of your feelings, not just the good ones. Don’t behave how people think you should, Be good to yourself, you are allowed to deal with YOUR Journey any way you like

…and always have Hope.