Within the last 3.5 years, I have been involved in a a number of cancer-related trials (clinical trials and quality of life trails are both important):
This trial is looking at testing tissue samples to try and find if you might benefit from having chemotherapy to treat your breast cancer: there is a sense that chemotherapy is over-prescribed, so the hope is that less people will need to have it. It gave me a 25% chance of skipping chemotherapy, although did end up delaying the start of chemotherapy by a couple of weeks – the waiting was exhausting (but obviously I still wanted to feed into the research for future patients, so held tight!). The trial was a double-blind trial so I’ll never know if I was in the 50% who was told to ‘continue with the plan developed by the oncologist’ (the control arm), or the 50% who had my tumour tested, and it determined that I would need the chemotherapy.
This was a really simple trial to be involved in, with no input from me at the beginning except agreeing to having the tumour tissue that had been taken at biopsy/mastectomy stage to be reused for testing. 3 months, 6 months, 12,24 and 36 months later, I then had to fill in a questionnaire as to whether there had been any progression, any ongoing side effects, and a sense of the time and cost that I had had to pay (e.g. petrol/parking).
SRS @ The Christie
I was invited to join a trial at The Christie when my spinal metastases were identified. This would have given me a 50% chance of having stereotactic radiotherapy – previously used largely for brain, but now an opportunity for a small number of tumours of a small size (3 under 3cm) on the spine:
Stereotactic radiotherapy (SRT) gives radiotherapy from many different angles around the body. The beams meet at the tumour. This means the tumour receives a high dose of radiation and the tissues around it receive a much lower dose. This lowers the risk of side effects. Usually you have between 1 and 8 treatments. Cancer Research UK.
When I came to sign up for the trial, it was full, though I would still have been permitted to join it, but there was also a programme ongoing through The Christie itself which meant that I could definitely have SRS without being part of the trial. So, I went ahead – with a planning session, a stressful (unsuccessful) first session, then 3 very successful treatments welded into place with a customised head cage .. the scan afterwards demonstrated that I was NEAD (No Evidence of Active Disease).
Developed by Breast Cancer Now and University of Leeds, this website is designed to help those with secondary breast cancer to access quality information, find out about support groups, and also monitor symptoms such as fatigue, bowel habits, nail effects, mental health, etc (largely for patient use to feed into their medical team, as I understand it).
For the purposes of the trial, once a week for 12 weeks, we completed the monitoring survey, and submitted (if wanted a copy of own form, needed to manually add email address so could be sent, so everything truly anonymised). I also fed back some thoughts about the structure/interactivity of the website (because of my specific professional training). I will also be participating in a 30-60 minute phone interview next week with the team, to aid as they seek to get the material to a publishable stage.
Undertaken by Sheffield Hallam Radiotherapy Department: ‘CommEmorating the Last Event, calling time on the end of treatment Bell following RAdioThErapy: The CELEBRATE study’ questions what is happening when patients use ‘End of Treatment Bells’, and whether it’s time to remove them from UK hospitals. See my video from that evening:
@drbexlAnother ##OpinionMinute – no leaks from the focus group, but the kind of thinking I went into it with – re ##EndOfTreatmentBell
The most recent trial which I have agreed to participate in (so long as oncologist signs me off as medically fit for it) is this new study, which recognises that COVID-19 has interfered with the movement and nutrition aspects of cancer patients lives. Research demonstrates that keeping moving and eating nourishing food does have a positive impact upon cancer patient outcomes – although very much at a time when patients are dealing with fatigue, low energy, and this doesn’t necessarily feel top of the pile. So far, I have had a conversation with one of the team, been sent some questionnaires to complete – when my oncologist is happy (re breathing, lymphedema, etc.) then I can be partnered with a trainer, who will engage (online) with me, 3 x week for first month, then decreasing frequency until final month is just one session (in the hope that will have embedded the learning in everyday lives.
I definitely need to keep an eye out for clinical trials – they are desperately needed for secondary patients who have run through the regular treatment options!
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014; second edition in process) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.