Patient Journey

What follows is based on the experience of a real patient but some details have been changed to protect the patient's identity.

John's story

This is the story of my experience at the CyberKnife Centre.

So why did I end up going there for treatment? At the age of 34, married with two children, I was diagnosed with a rare and non-aggressive cancer; a type of sarcoma in my pancreas. Nine hours of major surgery followed, thankfully removing the entire tumour. However, after four years, I started to have increasing pain and weight loss and my consultant discovered that the tumour had returned. Although it was small and slow growing, it had wrapped itself around a major blood vessel - not good news.

We discussed surgery but it wouldn't necessarily have offered a total cure and would have been difficult to carry out, as well as posing a serious risk to my health. It was then my consultant mentioned that there was a new CyberKnife Centre. It seemed almost too good to be true - an operation without the risks - what more could I ask for?

Although I had done some reading around the subject before I went to the Centre, I have to admit I didn't understand all the technical stuff - not that it mattered because staff there explained everything so well as I went along that I felt very safe and reassured all the time.

Stage 1 - Fiducial Markers

About a week before my CyberKnife treatment, I had some fiducial markers inserted, following a CT scan to measure exactly where they were to be placed. Not everyone needs these but they are tiny gold 'seeds' about the size of those tiny sugar strands used to decorate cakes, and can be inserted around the tumour to help the radiographer track it more accurately. I had these placed via an endoscopy (a tiny camera inserted down my throat into my stomach). I chose to have a general anaesthetic for this. Once these markers are in place, they do not need to be removed after CyberKnife treatment.

Stage 2 - Measuring

About a week later, time enough to allow the fiducial markers to settle, I had another CT scan where exact measurements were taken and programmed into a computer. Some patients are fitted with a frame moulded to the shape of the body, which helps you to stay as still as possible during treatment. This takes about 30 minutes and is completely painless.

Stage 3 - Planning

I wasn't directly involved in the next stage when, over the next few days, my CT images were downloaded onto the CyberKnife treatment planning computer. Using advanced computer software, a team including my consultant, a medical physicist and a dosimetrist (a member of the radiation oncology team who specialises in the operation of radiation equipment and calculations of dosages) worked out my treatment plan.

Stage 4 - Treatment day

Getting ready for treatment
I had three sessions of treatment over three consecutive days. I didn't feel at all nervous on the day of treatment as I knew there would be no surgery, no medication, just a bit of lying still.

On the day of my treatment I arrived at the Centre at about 7.30 am and had a chat to my consultant while the computer was set up, before starting treatment at 8.30 am. I was given a close-fitting black vest to put on over my clothes. It had white lines and markers on it to map where the tumour was. (I'd been told to bring something warm to wear under the vest as there would be a lot of lying around in a cool room.)

The treatment room
I went into the treatment room and lay on the bed. Alison, my nurse, put on some music for me to listen to and for about half an hour I lay there while the machine moved around as the radiographer, Rob, (in the control room) adjusted the computer settings. This took about half an hour.

During the actual treatment - which lasted about an hour - I kept as still as possible while the machine moved around me. Although it's a massive machine it never gets close enough to feel intimidating. But it does get to every angle around you and makes a low whirring noise while it works. I didn't need a special frame to help keep me still but Alison asked me to raise my hand if I needed to cough or sneeze and just to try to stay as still as possible. It all felt quite surreal - nothing appeared to be happening, I couldn't feel anything and after the treatment I didn't immediately feel any different.

After about an hour I was able to go home. I gave back the vest, was given a quick tour of the computer room and then left. I had no immediate after-effects although I'm told some people experience tiredness or nausea.

Follow ups
I had two further treatments, arriving at the hospital at about 7.30 am each time. I lay on the table for setting up which on these occasions took five minutes (as the computer had already been programmed) and then I had the treatments for one hour each time. By my second treatment the tumour had started to respond, the pain had disappeared and my appetite had begun to return.

Advice to others?
So what would I say to someone considering treatment? Well, in my case there wasn't much alternative other than risky and possibly unsuccessful surgery, but even if there had been, I would still have chosen the CyberKnife. It's a treatment that carries none of the risks usually associated with an operation or the risk of post-operative infection or complications. And it wasn't as daunting as I'd imagined. In fact, it was a surprisingly relaxed procedure and I felt totally reassured by the health professionals around me.