Heather’s Story – Why Clinical Trials Matter

Heather is participating in a Phase I clinical trial at the NI Cancer Centre, Belfast City Hospital. As part of the celebration of International Clinical Trials Day on 20th May, she shares her story and explains why clinical trials are important to her.

What has led up to taking part in an early phase cancer clinical trial?

I’m a very keen cyclist and participated in cycling events such as the Mallorca 312. In January 2018 I attended my GP for bleeding ‘down below’ and was advised to take over-the-counter treatments for haemorrhoids. Months later, I realised the symptoms were not improving and I sought a private consultation. The doctor examined me and within minutes I received the news ‘this is very serious, there’s a tumour there, this is cancer’. I had rectal cancer.

In October 2018 I started a combination of chemotherapy and 5 weeks of radiotherapy treatment followed by further chemotherapy, then major surgery with Mr Aidan Armstrong and more chemotherapy for secondary cancer in the lung and liver. I then needed a third line of treatment, Lonsurf, which I stopped when the scan showed disease had grown.   My oncologists, Dr Richard Park, Dr Robert Harte and Dr Gemma Corey and all the team have been brilliant and I could not thank them enough.

How did you feel about taking part in research?

I started the clinical trial over a month ago. I always liked the idea of trying clinical trials and have had a family member who had a great experience – my cousin went on a clinical trial a number of years ago and it has kept everything under control for him.

I’ve been told this is not curable. I’m not going to get better but I could get something to keep it at bay. I prefer that option to ‘nothing we can do’. Now I’m with the research team – Professor Victoria Coyle and the research nurses Alison, Diane and Joanne. If there were no clinical trials, I don’t know where I would be.

What’s it like taking part in the clinical trial?

Four weeks after stopping the Lonsurf I got through study screening and started treatment. Being on the clinical trial has been very straightforward – weekly assessments, bloods and off I go. I take the clinical trial tablets in the morning and evening. The first month I had to record my blood pressure at home. I feel a bit tired but I’ve no sickness.

I have my scan on Friday and I will see how it goes. If disease stayed stable that would be very very positive. I remain positive – one day at a time and keep going, that’s all I can do.

Going through treatment – what difference has the COVID-19 pandemic made?

It can be hard with COVID – before I would have enjoyed weekends away, a wee break, now it’s very isolating. Dealing with that on top of everything else has been challenging!

I’ve not a bad word about the NHS from the day and hour I have seen the doctors and right through COVID. I have never had a worry. I got my treatment every week. My husband usually drops me off for hospital visits. In the early stage before the pandemic I would have had someone accompany me, but I’m ok going to the clinic by myself.

During the first wave of the pandemic there was a temporary move of treatment from the Bridgewater Suite in the Belfast City Hospital to the Ulster Independent Clinic and everything went as smooth as anything. The experience I have had – everyone has just been amazing – you’re one big team and you don’t realise the impact you have on people’s lives!

What else is important to you?

I live with my husband Martin and the dog. I have great support from my husband. We have a good wee team at home!

I also have to mention the District Nurses that have been calling with me every day to dress a wound since my subsequent surgery in October 2020 – they have all been amazing to me!

I continue to work and like to keep focused.

I always think, if only I had checked myself more. I always like to tell others about my experience so that I can encourage others to go to their GP and make sure you get a full examination!

NICTN congratulates Hazel Carson awarded MBE

NICTN send massive congratulations to Hazel Carson, a member of the NI Cancer Research Consumer Forum, who has been awarded a MBE in the New Year Honours for services to people with genetic high risk of cancer in Northern Ireland.

Hazel is very deserving of this award and she is a total inspiration! Hazel set up BRCA Link NI BRCA Link NI Home (brcani.co.uk) , a voluntary organisation helping people to access information and support about BRCA genetic mutations whilst raising awareness of Hereditary Breast and Ovarian Cancer.  Hazel’s on-going dedication and enthusiasm are immense and her influence on services and research alike are totally invaluable alongside so much more, including the wonderful individual support she provides to so many.  She shares her own story here About BRCA Link NI (brcani.co.uk).

Deserved recognition for this brilliant service to the community!

Andrea and Emma Run for Belfast Tap Centre and Thank Supporters

They did it!

Congratulations to Andrea Patterson and Emma Wilson who ran from the front of the Belfast City Hospital past many of Belfast’s landmarks and back to base completing 14 km on 18 November 2020.

An amazing fundraising achievement by the enthusiastic duo!


Emma explained she had been motivated to do something to try and benefit patients and raise the profile of Cure Leukaemia.  ‘Research is all about creating new knowledge and Cure Leukaemia allow us to facilitate this through funding nursing posts and with the introduction of TAP trials. Thank you to each and every donation and for all the support we have received.’

Andrea continued ‘Like a lot of charities, Cure Leukaemia’s fundraising activities have been severely affected by COVID-19 restrictions. Our patients benefit due to Cure Leukaemia’s funding of a Clinical Research Nurse in Belfast and it was great to be able to raise money on their behalf. Thanks so much to everyone who supported us in any way!’

Andrea and Emma Run for Cure Leukaemia photos 18.11.20

NICTN Haematology Research Nurses Run for Cure Leukaemia

Belfast Haematology Clinical Research Nurse Team – Andrea, Laura and Emma

Haematology Clinical Research Nurses, Andrea Patterson and Emma Wilson, are joining the CEO of Cure Leukaemia, running 14km to support the Belfast TAP Centre.  TAP, which stands for the Trials Acceleration Programme, consists of a network of specialist research nurses to enable the accelerated setup and delivery of pioneering and potentially life-saving blood cancer clinical trials. NICTN are pleased to be part of the TAP network.

The run takes place on 18 November 2020 and information about how to support the Belfast TAP Centre is here: https://www.justgiving.com/fundraising/Belfast-we-will-find-a-cure

Good luck to Andrea and Emma for the run and well done for highlighting this important work!

More about Cure Leukaemia here: http://www.cureleukaemia.co.uk/page/news/536/james-tour-of-the-tap

DARS Study Shows Benefit of Dysphagia-Optimised Radiotherapy in Patients with Head and Neck Cancer

Radiotherapy to the Head and Neck can cause significant throat and swallowing difficulties. Belfast was the highest recruiting centre taking part in the DARS clinical trial , a study that randomised patients to standard radiotherapy v dysphagia-optimised radiotherapy to evaluate swallowing post treatment. Early results, presented at the American Society of Clinical Oncology conference this year, revealed 40% of patients who received the dysphagia-optimised technique reported that they ‘could swallow as good as ever’ compared to 15% of patients in the standard radiotherapy arm. Other benefits of the dysphagia-optimised technique were significantly reduced dose to key swallowing muscles, improved patient-reported swallowing function and improved and speech & language therapist assessment of swallow function.

Dr Keith Rooney, Principal Investigator (PI) of the study in Belfast, reported;

‘This functional benefit using the more complex dysphagia-optimised technique is a game changer in radiotherapy planning for throat cancers and our physics and treatment planning team have been instrumental in demonstrating its benefits through involvement from the trial development stage through to participating in the quality assurance component of trial management. Our speech and language team worked closely with the trial coordinators to improve the swallowing assessments and have also participated in a further substudy within the trial using videofluoroscopy.

The combination of our entire research, planning and clinical team worked seamlessly to enable the success of the trial locally and we were the top performing centre with the highest number of patients recruited and continue to achieve  high completion of our follow-up assessments. In addition, Friends has been instrumental in enabling the trial to succeed through its support of our research and clinical teams.

Well done everyone!’

NICTN wishes to thank all the patients who are taking part in the study and congratulates the study team on these results, demonstrating dysphagia-optimised Intensity Modulated Radiotherapy (IMRT) will provide significant quality-of-life benefits to patients.

Read the study abstract here https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.6508 .

Some members of the DARS team: Left to right – Stacey Conway (Lead Clinical Research Radiographer), Dr Keith Rooney (PI, Consultant Oncologist), Oonagh Stewart (Clinical Research Radiographer), Dr Fionnuala Houghton (Consultant Oncologist), Aileen McGurran (Speech and language Therapist) and Dr John Lawson (Consultant Radiologist)

Post-Consultation PPI Strategy Available

The NICTN and NI Cancer Research Consumer Forum (NICRCF) have released their post-consultation PPI strategy for cancer research in NI.  This updates the strategy originally launched last year.  The NICTN and NICRCF wish to thank everyone who contributed to the consultation and everyone involved in review of this current version.

Post consultation NICTN_NICRCF PPI Strategy FINAL v 2 31 March 2020


NICTN starts re-activating recruitment

Patient safety remains a priority of the NICTN.  At the outset of the local COVID-19 crisis NICTN suspended recruitment to the majority of clinical trials and other research studies.  In alignment with national guidance, NICTN is currently working to re-activate recruitment to studies, where this is feasible and safe.   Anyone who wishes to consider participation in a cancer clinical trial should discuss this with their doctor.