Shannon’s Story

Osteosarcoma at the fibula
Age at Diagnosis: 19
Date of Diagnosis: May 2005
Location: New Zealand

Diagnosis: I live in Wellington, New Zealand, was 19, do Tae Kwon Do, and was seeing a physio in Feb 05 for my left leg injured during training, suddenly my right leg started throbbing at night got hot and was swelling up.

I was seeing the physio a few days later so asked him to look at my other leg, he immediately sent me directly to the doctor (like he phoned and said I was on the way now) then he phoned my mum and asked her to meet me at the doctors. My own doctor was away so I saw a locum who sent me directly to the emergency room.

Within 4 hours of seeing the physio I was in a hospital bed and told not to get out. 10 days on penicillin, MRI, Ultrasound, CT, X-rays. I was told at that stage there was “confusion” with the tests. It could be Osteomyelitis or Ewing’s sarcoma. However after 10 days the swelling had gone down, I was discharged on crutches and told to return the following week for another check with the orthopaedic surgeon. This Tuesday visit thing went on every Tuesday for nearly 2.5 months – more tests; then he decided to do a needle biopsy. Lucky for me there was no fluid visible on the ultrasound so it was not done. Finally Mum had a hissy fit and demanded that all tests and scans be referred to a bone clinic in another city – Auckland.

Within a few days, I’m on the slab for a biopsy with the Wellington Ortho surgeon being given a specific two hour “how to biopsy this mutt” lecture from the Auckland surgeon, I wasn’t thrilled about the whole thing and almost backed out of the biopsy completely, because at that stage I felt great, no pain and wondered what all the fuss was about, trouble is Mum would have given me a bit of grief if I had.

About 12 days later we were called in and advised that I had High grade Osteosarcoma, fibrohistiocytic variant – Fibula – sections showing a pleomorphic sarcoma with spindled tumour cells in a storiform pattern. I was shocked, Mum was crying and Dad was pale but staunch.

More delays followed this diagnosis, it took about 10 days before I was referred to the Auckland surgeon- Mike Hanlon, for treatment and only after Mum had another hissy fit. We flew to Auckland – about 1 hour away- had every test and scan repeated. It was the first bone scan I’d been given though, I think that maybe should have been done 3 months earlier as you could see the tumour and eaten bone clearly on that.

Since then it’s been chemo, surgery, chemo, tests and so on.

Treatment: I was sent back to my home city- Wellington, sent to the fertility clinic, then had a double lumen Hickman put in and given two cycles of Cisplatin, Doxorubicin and Methotrexate. This started Mid June 2005. Then I flew back to Auckland for limb salvage surgery in August 2005. Mike Hanlon removed the tumour and a large part of my Fibula – from the knee down, 140mm long x 74mm – about the size of my hand. Then back to Wellington for four more chemo cycles. The surgery was better than I expected and really felt little pain. I was on crutches for 8 weeks. The necrosis on the tumour was 98% with clear resection margins.

I’d had a dreadful time in the first two cycles with nausea and vomiting – around 50-80 times a day every day of chemo but less by the time I got home each time. I had ringing in my ears. They put the GCSF needle on the outside of my thigh, it was really uncomfortable there, the next time I asked them to put it on the inside thigh and that was much more comfortable. My hair started falling out about 15 days after the first chemo session.

I lost about 10kgs in the first month, was also a bit irritable (actually a lot irritable). I barely remember the first two months of chemo. I was so out of it with nausea, ulcers all the way through my digestive tract etc., I found it better to simply sleep or watch TV. I didn’t want any friends around me because I felt like sh*t.

The Oncologist, Anne (whose nickname was Atilla the Hunny – because she was fierce but a real sweetie underneath) was telling me about the different sorts of feeding tubes, because I was losing so much weight. Mum decided to get on the net and she found a great drug called Emend. That really worked, I went from heaps of chucks each day to none, put on weight, got out of hospital within 3 days instead of 6, and felt heaps better. I even got to go out, rarely. On one of these evening excursions I discovered that (despite advice to the contrary) I could drink alcohol and feel nothing – no hangover, no headache!

Unfortunately the Cisplatin and Doxorubicin caused significant damage to my heart after three cycles, so I was taken off them and put onto ICE – Ifos, carboplatin and etoposide. Then there were more problems the etoposide was also withdrawn. Only now have I found out that there is a drug – Zinecard that helps prevent heart damage. There were lots of problems with Neutropenia, low platelets, low white cells, Hickman infection – requiring the first removed and a new one put back about a month later.

I finished chemo in February 2006 and turned 20. I’m NED (no evidence of disease) and feel great.

Recovery: I did some PT, but just didn’t feel like doing it that much. I still go to the physio, but only fortnightly. I had almost total foot drop from the surgery. I was given horrible plastic braces to sleep in and use for walking. When I complained to Mike Hanlon about the ulcers on my legs caused by them he suggested I get a Dictus strap. This was heaps better, I could walk easier and because it was like a bungee cord on my foot you could barely see there was a problem.

I have some heart issues and am seeing a cardiologist shortly to find out the implications of the lost heart function.

Now about a year since surgery I walk with only a slight limp and am back doing Tae Kwon Do, in fact was 1st in special techniques in my first tournament in 15 months. I’m now involved in Canteen and keen to “walk the walk” with anyone else undergoing treatment.

I think I have been very lucky getting Oncologist Anne, being treated in paediatrics and the Auckland Surgeon Mike, they have been amazing throughout. I’ve also been incredibly lucky with my recovery. I’m so grateful to all those who have got me through this.

My favourite quote is from a poem about the 2nd world war

“…and when that soldier reaches the pearly gates, to Saint Peter he will tell ‘another soldier reporting Sir, I’ve served my time in hell.”

Life now: I’m back at university, studying for a BBS with a degree in Property management and valuation.

I’m back into Tae Kwon Do and hoping to do my second black belt in the next year. I’m also planning to get into the NZ TKD team for 2007. I’m also teaching TKD at the moment because that helps my fitness.

Also now vice president of Canteen (teenage cancer kids in New Zealand) and really keen to do some mentoring with young people going through OS. We organise lots of functions for survivors and siblings and rarely discuss cancer – that’s for the social workers, we’re only interested in having fun!

I still get quite tired, sometimes a bit down but not for long as I realise how lucky I am to be alive and well again. I realise how lucky we are to have the treatment, doctors and awesome nurses who can patch me up and send me on my way, the wonderful friends, some of who are in cyberspace, who watched and helped me along the journey – Thank you all.

Thoughts and hints for new patients:

-get the GCSF needle put on the inside thigh
-get the grandchildren banked
-roll with it – don’t fight treatment, fight for your spirit instead
-go to the best doctors for sarcoma, don’t simply pick your city
because its convenient
-when you feel well, get out there and do something

A poem recently sent to me says it all – I don’t know who wrote it -a young girl in NY

SLOW DANCE

Have you ever watched kids On a merry-go-round?
Or listened to the rain Slapping on the ground?
Ever followed a butterfly’s erratic flight?
Or gazed at the sun into the fading night?
You better slow down. Don’t dance so fast.
Time is short. The music won’t last.

Do you run through each day On the fly?
When you ask How are you? Do you hear the reply?
When the day is done Do you lie in your bed
With the next hundred chores Running through your head?
You’d better slow down Don’t dance so fast.
Time is short. The music won’t last.

Ever told your child, We’ll do it tomorrow?
and in your haste, not see his sorrow?
Ever lost touch, let a good friendship die
Cause you never had time To call and say,”Hi”
You’d better slow down. Don’t dance so fast.
Time is short. The music won’t last.

When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift….Thrown away.
Life is not a race. Do take it slower
Hear the music Before the song is over.

Thank you for reading this.