Cora Gillies, who took part in one of our clinical trials.
In part 1 of this blog series we heard from Kim, a therapeutic radiographer who is helping run one of our clinical trials. In this instalment, one of the patients who took part in this trial, Cora Gillies, tells us her first-hand experience of what it was like to be involved.
After over 30 years’ teaching I decided to retire in July 2016. It wasn’t until after a trip to the United States for the month of November that I thought I should have the lump on my arm investigated.
It had caused me some pain in the past and the thought was that it might be nerve damage. This seemed to make sense to me; however, the lump started to grow and I became more concerned.
An MRI confirmed the diagnosis and in May 2017 I found out I had cancer; I was referred to the Royal National Orthopaedic Hospital (RNOH) in Stanmore where a diagnosis of a rare type of soft tissue cancer called a synovial sarcoma was given to me. The RNOH is a centre of excellence for this type of cancer so I knew I was in good hands.
I was referred to University Hospital Southampton for radiotherapy treatment before an operation to remove the lump at the RNOH. My radiotherapy treatment began on July 3rd and finished on August 4th. I treated the journey to and from Southampton as if I was commuting to work for 5 weeks.
I was asked by the cancer specialist if I would be I interested in being part of a clinical trial using a particular type of radiotherapy treatment. The trial is called IMRiS, which stands for intensity modulated radiotherapy (IMRT) in primary bone and soft tissue sarcoma.
Without a doubt
I was given an information pack which detailed the process of IMRiS, what to expect, potential side effects and long-term effects of the treatment. The advantage of IMRT is that it is an advanced way of giving radiotherapy, where the x-ray treatment beam is moulded closely to the shape of the tumour. As the beam is more precise than with conventional radiotherapy, this results in less of the surrounding healthy tissue being affected.
That’s why the IMRiS trial wants to find out if this kind of radiotherapy can safely treat the type of cancer I have.
And there was no doubt in my mind: I wanted to be part of the trial.
If the treatment could be more effective with fewer side effects than standard radiotherapy, then I wanted to take part. I was also told that as part of the trial I would be given continued care every 3 months and for up to 3 years after the treatment.
But this decision was not purely selfish: I wanted to help future patients as well. If this type of radiotherapy is shown to be more effective in treating soft tissue sarcoma, then I thought it has to be good and worthwhile taking part in the clinical trial.
Care and precision
For each treatment appointment I had, I was positioned on a purpose-built board with my wrist and shoulder “locked” in place. The team wrapped a special piece of material called a bolus around the area of my tumour, to help target the radiation beam and spare my healthy tissue.
The team of radiographers who looked after me each day spent an inordinate amount of time making sure the exact position of my arm was correct for the x-ray beams. I was scanned during treatment and if they found that the position wasn’t quite right, they would make adjustments and restart the process. The care and attention to detail was amazing throughout.
I had few, if any, side effects during the treatment. My skin around the tumour did become red and slightly sore from the radiation, rather like sunburn, and the skin peeled, again like sunburn.
I am so pleased to have been asked to be a part of this trial
Some people experience dehydration during cancer therapy but I drink a lot of water anyway so this wasn’t an issue. I continued playing tennis, running and hiking, and generally felt well throughout the 5 weeks of radiotherapy.
The care I received before, during and after the radiotherapy appointments has been absolutely wonderful. As part of the trial I return to Southampton every three months, this will continue for at least two years, then every six months and then annually. As part of my appointment I have a chest x-ray; the consultant in Southampton told me that if the cancer was going to spread it would go to my lungs.
The IMRiS trial team are all highly professional people who demonstrate compassion, understanding, patience and a sense of calm, instilling confidence in all they do.
Having had my second check-up recently, all is going very well. I am so pleased to have been asked to be a part of this trial and I encourage others to seize the opportunity if it is presented to them.