An office worker needed her leg amputated after doctors missed her rare cancer for three years – so she’s fundraising for a £90,000 bionic leg.
Rebekah Laverty, 29, from Glasgow, Scotland, suffered from debilitating knee pain for years before being diagnosed with a rare cancer that affects only 1-3 people out of every million.
She claims doctors injected the tumour with steroids and even attempted to drain fluid from the solid mass, causing her excruciating pain, in an alleged botched attempt at treating her symptoms.
In May this year, Rebekah chose to have her right leg amputated to try and cure her cancer – but says the limb still itches and hurts.
“The type of cancer I have is usually found in the arms, legs or near joints such as the wrist or ankle but it’s so rare I’ve been told a GP will maybe see one case in their whole career so mine wasn’t picked up,” she told Jam Press.
“My referrals were also delayed due to Covid.
“It took until September 2021 for me to be referred for an MRI and get some answers.
“I received the news that I had this cancer at an appointment that I went to on my own.
“By then I’d been to countless appointments with no answers so I had no faith that this time would be any different.
“I called my partner in shock and I was sent to the Beatson West of Scotland Cancer Centre the same day to discuss my treatment.
“They were fantastic. From the moment of my diagnosis I was looked after.”
In 2019, doctors allegedly initially told Rebekah she was suffering from an inflammatory condition called bursitis, which causes painful swelling, but after years of unsuccessful treatments an MRI finally revealed she actually had a 13cm cancerous tumour above her right knee.
A biopsy confirmed she was suffering from synovial sarcoma – a rare cancer that occurs in soft tissue, such as a muscle or ligaments.
After three years of uncertainty and pain, Rebekah was finally given a diagnosis on 30 December 2021.
Before being given the news that she had cancer Rebekah claims to have been receiving unsuccessful treatment from a rheumatologist for about a year.
She said: “I was on six tablets a day with weekly blood tests to ensure the mix of medicines weren’t damaging me.
“On top of that I was given steroid injections into my knee which never seemed to help – in fact they heightened the risk that my cancer could spread and grow.
“A few times doctors attempted to drain fluid from my tumour thinking it was just swelling.
“That was agonising. I’m so angry they got it wrong for so long and I had to go through so much.
“I took myself to A&E a few times as I was being sick in pain but X-rays would come back clear and I’d be sent home with more pain relief.
“When I showed no signs of improvement the rheumatologist referred me to have an MRI scan that’s when they found a 13cm mass.
“A biopsy a few weeks later confirmed I had synovial sarcoma.”
Rebekah was told she needed 3-4 rounds of chemotherapy and 25 rounds of radiotherapy.
She also decided to freeze her eggs to protect her future fertility ahead of treatment.
Rebekah said: “Each chemo round lasted for four days and I had to stay over in hospital each time.
“I was violently sick, I needed blood transfusions and I lost all my hair.
“Thankfully I never had any side effects from radiotherapy other than redness on the area being treated.
“Through all of that I was just so grateful to finally have answers.”
Following on from the treatments, Rebekah was given three surgical options, two of which would save her leg and the third was amputation.
Rebekah said: “It was the hardest decision for me to make.
“I knew I was going to go from an able-bodied person to a disabled person overnight.
“But I also knew amputation was the best solution to give me the best chance possible.
“Throughout those years of having attempts to drain what they thought was fluid on my leg, and having multiple injections into the knee area, I was told this could have moved any cancer cells therefore another tumour could develop over time if I was to save my leg.
“That would have been a constant worry.”
Rebekah is still recovering from her surgery with weekly physio appointments.
At home she uses a zimmer frame or wheelchair and needs a lot of help to make her meals or to go up and down stairs.
She said: “I am working on strengthening my muscles at the moment so that it will be easier for me to adapt when I can hopefully get my NHS mechanical leg very soon.
“The first few days after having my leg amputated I could still feel the lower part of my leg and could ‘move my toes’ and felt like I had an ‘itchy’ foot.
“As time has gone on this has reduced and it only happens occasionally but I have constant pins and needles and throbbing pains that happen all day and all night.
“It’s a work in progress to try and find the correct medication which works for me which we are still working on.”
Now she is fundraising for a £90,000 microprocessor mechanical leg so that she can “enjoy life with no limitations”.
She is aiming to be back on two feet by her 30th birthday next year.
“My goal is to be as active as I can be,” she told Jam Press.
“At the moment I am very reliant on my family and I can’t get upstairs or drive myself.
“Eventually I want to live life with no limitations – how I was when I still had my leg.
“The type of prosthetic I’d like should have almost every function of a human leg.
“I’m hoping my partner and I can look forward to a nice holiday to relax for my 30th next year and by then I’d like to be up on two legs and getting on with life.
“That’s my target.”
Rebekah is sharing her recovery journey via her instagram page (@fighting_synovial_sarcoma) to raise awareness of soft tissue cancer.
She said: “I decided to document my journey as when I was first diagnosed it was a very scary time and synovial sarcoma is a very rare type of cancer therefore there wasn’t very many people I could turn to for answers.
“I know I wanted to know everything from people’s own experiences so I searched social media and found loads of lovely people.
“From then on I said I was going to document everything in case it might help someone else.”
Looking to the future Rebekah wants to work on her strength and confidence to get back to normal.
She added: “I have only been out in public twice and I was dreading it to begin with. I was dreading the looks but it wasn’t as bad as I thought.
“I get the occasional stare but it doesn’t bother me too much. I’m just glad to be cancer free right now and hope it stays that way.
“I always think how there are people much worse than me.
“Although this is life-changing, I won’t let it be life-limiting.”
She has also launched a GoFundMe for her bionic leg, aiming to raise £8,000.
Russell Coulthard, NHS Lanarkshire deputy director of acute services, told Glasgow Live: “We appreciate this must have been an incredibly distressing time for Rebekah.
“We would welcome the opportunity to speak with Rebekah about her experience if she would like.
“I would encourage her to get in contact with us directly through our patient affairs team to allow us to arrange this.”
Jam Press has contacted the NHS for comment.
