Meet Sarah...

Sarah was diagnosed with a peripheral nerve sheath tumour in 2012.


When were you diagnosed and what with?
I was diagnosed at the end of December 2012 with a soft tissue sarcoma of the nerves called Malignant Peripheral Nerve Sheath Tumour, or MPNST for short.

How did you find out you had cancer?
In 2011 I had a car accident and shortly after a lump appeared in my neck. I went to see my GP who immediately referred me to the hospital, where I had an MRI scan which showed the tumour in my brachial plexus. That department didn't want to operate and referred me on to another two departments who eventually referred me to genetics in Birmingham because I have neurofibromatosis, a genetic disorder that causes usually benign tumours to form on nerves on and under the skin.

The genetics consultant referred me to a specialist clinic in London that have expertise in diagnosing MPNST and I was seen there five months later. In this time the tumour was growing and I was noticing pain in my back (which I didn't mention to anyone because as a nursery teacher I was used to sitting on tiny chairs and I presumed I'd be told to sit on a proper sized one). When I saw the consultant in London she immediately ordered a PET scan which took place 48 hours later. This showed up two areas of concern: the tumour in my neck which we could see, and another one in my spine. From there, I was referred to the Royal National Orthopaedic Hospital in Stanmore where I met one of my two consultants, who booked me in for a CT guided biopsy. Two weeks later, just days before Christmas, I was told I had cancer, although the consultant wasn't very clear about it. I was eventually told properly after my second surgery with a room full of strangers.

What did you think and feel when you were diagnosed?
When the consultant took my hands I started to feel as if the world was falling away, everything was muffled and I just about heard him say the words. My hearing went fuzzy, I got tunnel vision and was feeling as if there was no way I could stand on my feet without falling. It was then that I realised what the consultant had been trying to tell me a couple of weeks back. I felt that I'd been totally naïve.

How did the people around you react?
It was hard for my family to take in, partly because of the genetic connection, although I insist it could have happened anyway. 

What treatment did you have?
For various reasons I only had surgery. It was thought that my cancer had been caught early enough to avoid radiotherapy that could be risky because of my neurofibromatosis.

How did you feel through treatment?
I had a very long recovery from surgery it took around two years to recover from the spine surgery, and I'm still recovering function in my arm and hand.

What happened after treatment finished?
I'm currently still undergoing physiotherapy and occupational therapy to try and regain function lost due to the cancer. It's been a long road but it looks like we are coming to the end of the road with options.

How did you get involved with Shine?
I got involved by attending the first Great Escape. I'd wanted to meet other young people with similar experiences and having found Shine through internet searches I thought it looked the perfect group for what I needed.

What difference has Shine made to you?
Shine has taught me that it's okay to not be okay after treatment finishes and you start to go about managing your “new normal”. It's given me some of the best new friends I could ever wish for.

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
I feel that all in all my cancer experience has been a positive one, despite the new physical challenges, having lost most of the use of my left arm and needing to use a wheelchair while out the house. 

If you could give one piece of advice to yourself before your what would it be?
Don't give up with the doctors, don't let them ignore your pain, and take someone with you to the appointments in case you miss something important (like being told you have cancer!)