Allie Morgan – Writer & Cancer Survivor

It’s been 11 years since I was diagnosed with osteosarcoma but reading Sarcoma UK‘s latest report, The Loneliest Cancer, it seems as though nothing much has changed.

The new campaign highlights the fact that sarcoma is one of the rarest cancers out there and as such, doesn’t receive as much funding as other cancers might.

“In a YouGov poll carried out on behalf of Sarcoma UK this year, 75% said they didn’t know what sarcoma was.”

–  The Loneliest Cancer report, Sarcoma UK

So few people are aware of the disease that awareness of sarcoma symptoms are little known or they are confused for other conditions.

Symptoms

The first sign of my osteosarcoma was what felt like growing pains in my left leg. It kept me awake at night – a dull pain around my knee joint.

Other symptoms I had were:

• Swelling around the joint
• Fatigue
• Weight loss
• A limp
• Pain and restricted movement when trying to straighten my leg

Misdiagnosis

I was diagnosed in April 2008 with osteosarcoma of the femur but I went to the doctors about six months before that to tell them about the pain in my leg. Unfortunately, due to the rarity of the disease as well as the vague symptoms I was experiencing, it wasn’t picked up. But I just had a feeling something was wrong.

“It’s so uncommon that a GP might only ever see one [sarcoma] in their whole career.”

– The Loneliest Cancer report, Sarcoma UK

I went back to the doctors three times to have my leg assessed. The first doctor felt the warmth around my knee and misdiagnosed me with arthritis.7

A few months later, I saw a second doctor who disagreed with the arthritis diagnosis – the anti-inflammatory pills I was taking weren’t working and my knee had started to swell. They told me I had ligament damage and gave me exercises to do to build up the muscle.

When I went back again in April, a third doctor agreed it was ligament damage and recommended I continue with the exercises. Luckily, just as we were leaving, she asked if we’d like to have an X-ray, just to put our minds at rest and thankfully, we agreed.

The X-ray showed that the tumour (which was 10cm in diameter at this stage) had broken the bone & that’s why I had started to limp.

I don’t blame the doctors at all for their misdiagnoses – the chance of it being what it turned out to be were so slim that there was only a very small chance of it being something so serious.

However, this is something that needs to be addressed as the sooner cancer is caught, the higher chance there is of survival.

“As many as 40% of patients do not receive an initial accurate diagnosis of their sarcoma, according to Sarcoma UK research.”

– The Loneliest Cancer report, Sarcoma UK

If you feel there is something wrong, please be persistent with your doctor – just one X-ray or scan could save your life as it did mine.

New treatments on the horizon

The report also contained some amazing news about new ways of treating osteosarcoma.

“Research at Aston University is exploring a new way to tackle the damage caused by sarcomas in the bone while at the same time stopping cancer returning.”

– The Loneliest Cancer report, Sarcoma UK

Bioactive glass is a potentially groundbreaking new way to treat the disease. According to Sarcoma UK’s report, ‘this glass will be used to repair small defects caused by the surgical removal of the affected bone and release ions to attack the cancer cells.’ Mindblowing stuff – I’m completely in awe.

11 years on…

Since I was diagnosed, I’ve managed to get 5 GCSE’s, 3 A Levels, 2 degrees, a full time job, a cosy home and a wonderful fiance. I’ve seen magical places, met marvellous people & I don’t take any moment spent with my family or friends for granted.

I’m so lucky that I was diagnosed when I was and I got the treatment (however horrible!) that I needed.

If you get a chance to read the report, I’d urge you to but if not, just tell one other person what symptoms to look out for.

Little by little, we can spread the word & stop sarcoma in its tracks.

Allie x