A Dundee woman was misdiagnosed and then died from a rare form of cancer after a tumour the size of a water melon grew on her leg.
The untimely death of 39-year-old Katie Hannah last September has now led to her family helping medical staff learn from the tragedy.
Her brother Michael and his family are still grieving for Katie, who died while the former insurance worker was battling to get compensation from NHS Tayside for delays in diagnosis.
The family decided to drop the case and work with the health authority to design an education programme for doctors and other medical staff to help them recognise rare conditions and diagnose more promptly, believing that was for the greater good of everyone.
“We were angry that the NHS had not diagnosed this (earlier) but it was not through malice,” Mr Hannah said. “The doctors didn’t do it deliberately.”
He said pursuing the case would have meant his family and the NHS spending a lot of money on lawyers, which wouldn’t bring his sister back.
“I was very keen we do something positive as well in terms of raising awareness of this kind of cancer, because that is a positive legacy,” Mr Hannah said. “Maybe down the line another young woman will go to her GP with a similar difficult diagnosis and they will catch it earlier.”
Katie was eventually diagnosed with liposarcoma, a rare form of cancer which originates in fatty tissue. Her brother has now become involved in establishing a support group for sarcoma sufferers in Scotland.
He said his sister was single, enjoyed life, and spent a year working in Australia at the end of the 90s before returning to her home city and work with a major insurance group. The first sign of trouble came towards the end of 2002 when she was diagnosed with deep vein thrombosis (DVT).
Mr Hannah said that when his sister made repeated visits to her GP and to hospital, she was treated for a complication of DVT, treatment which was ineffective because the swelling in her thigh was caused by undiagnosed liposarcoma.
“She did have a DVT and so the initial diagnosis of post DVT problems was a reasonable one to make, but she continued to have problems and they got worse over the years, but they kept on thinking it was to do with the DVT when really they should have been looking at other options.
“When sarcoma was diagnosed in November 2006, it had got to a very, very advanced stage. She felt very devastated and thought it should have been discovered before it was a huge tumour.
“The only possible treatment was amputation. The tumour was quite high up in her thigh which meant the whole leg had to be removed. It was immensely difficult. Katie had to learn to walk again.”
Following amputation at the beginning of January 2007, not only did Katie learn to walk again but she continued her yoga classes with her teacher adapting the exercises for one leg. But the cancer spread through her body and despite aggressive treatment, Katie died last September.
Her family have been working with Dr Andrew Russell, NHS Tayside’s medical director, to shape an education programme for GPs, radiologists and sonographers so that unusual presentations of cancer, such as sarcomas, are detected and treated at an early stage.
Dr Russell said, “It is vitally important that we do everything we can to raise awareness of rarer conditions such as sarcomas. We are extremely privileged to be working with the Hannah family to provide educational opportunities in NHS Tayside and are committed to an ongoing programme of training for healthcare professionals.
“This work will prove invaluable in increasing knowledge about more unusual cancers and I believe this is a fitting legacy for Katie.”
Mr Hannah is planning to cycle from Dundee to Edinburgh at the end of the month to raise money for Sarcoma UK. To donate go to www.justgiving.co.uk/Katie-Hannah