by Dr Sam Merriel
NIHR Academic Clinical Fellow
Centre for Academic Primary Care
I was recently invited to address the annual general meeting of PROSPECT, a local prostate cancer support group. The brief I was given was to discuss the GP’s role in diagnosing prostate cancer and the latest research in this area; a daunting task to tackle in a room full of men with prostate cancer at various stages on their cancer journey.
I spoke of the GP’s role across the continuum of cancer, from prevention and early diagnosis through to survivorship support and palliative care. I tried to discuss some of the latest studies in the field, such as the PROMIS study and the CAP trial, in a digestible form for these men. I also mused with them about the potential role new genetic technologies will have in the future in guiding GPs in determining cancer risk prediction and making diagnoses earlier. However, it was the general discussion that followed that was most enlightening for us all.
In the room were men with a mix of cancer stories. Some had just received their diagnosis and wanted to hear from peers about what happens next. Some had undergone surgery or radiotherapy and were in a post-treatment monitoring phase. Others were receiving systemic therapy for more widespread disease. An ex-member’s partner filled the role of secretary of the patient group, carrying on her late loved one’s legacy to support men like him. I know all of this because these men (and women) were so willing to be open with me and each other about their experience of prostate cancer. “My PSA’s on the rise. Going back to chat to the specialist next week” said one of the older members of the group. “I’ve just started hormone therapy. Never knew how tired it would make me feel” shared a thin gentleman with a warm smile.
Then came the questions for the invited speaker. “I had to wait two years before my GP agreed to order a PSA, and it was 335! Why don’t GPs want to do the test?” came a challenge from the back of the room. “If I’m feeling poorly during my treatment, is it worth seeing my GP or should I just go back to the specialist?” asked one of the younger men. “I was on the group that wrote the latest local guidelines. Do GPs get taught about things like that these days?” enquired another, sitting in the front row.
As GPs, we go along for the ride on our patient’s journeys through illness every day. For many men with prostate cancer, it is something they will live with for months or years, and some will become experts in their condition. In these intensely pressured times for general practice, engaging with patient groups is a wonderful way to gain insights we might miss in day-to-day consultations. Primary care researchers can gain from patient engagement and involvement too; from suggesting new avenues for research through to helping develop ideas and proposals. “Send them to us”, suggested a sage-looking man, spectacles in hand “and we’ll teach them a thing or two”.
*My sincerest thanks to PROSPECT, a prostate cancer support group in Bristol and South-West England, for sharing their stories and their thoughts on our research
Dr Sam Merriel is an NIHR academic clinical fellow in general practice researching cancer prevention and early diagnosis in primary care.