Patient story: Hampshire resident living with rare cancer promotes health research
A Hampshire resident is promoting the importance of health research as a way of developing new treatments and technologies, after living with a rare cancer for 17 years.
Pete Verey, aged 73, from Winchester, was diagnosed with neuroendocrine cancer in 2003, at the age of 56.
Mr Verey, who is married with two daughters, was told he had cancerous tumours which had developed in his midgut, before spreading to his liver (known as metastasis).
Neuroendocrine tumours (NETs) are rare and usually grow in the bowels or appendix but can also be found in other areas such as the stomach. The tumours can be cancerous or non-cancerous and tend to grow very slowly.
Mr Verey’s symptoms began with a pain in his lower gut, but an endoscopy investigation could not find a cause. When he began to experience a change in bowel movements and flushing of the skin, he made another appointment with his GP to discuss his symptoms.
The GP explained that Mr Verey could be suffering from irritable bowel syndrome, a common condition which affects the digestive system, but that he wanted to carry out some further tests to rule out anything else.
Shortly after, Mr Verey received a call from his GP surgery. The GP suspected Mr Verey of having carcinoid syndrome, a collection of symptoms that some people develop when a neuroendocrine tumour releases hormones into the bloodstream. In the UK, around 2,900 people are diagnosed with a neuroendocrine tumour each year, but not everyone will have carcinoid syndrome. Symptoms include diarrhoea, skin flushes and breathlessness.
Further tests confirmed the suspected diagnosis. Mr Verey explains: “I was taken for an ultrasound and as soon as they got it up on the screen, you could see about seven tumours in my liver. My GP's diagnosis was outstanding as it is a rare condition which he had last heard of about 28 years earlier in medical school.”
Whilst the cancer is incurable, Mr Verey underwent treatment to reduce his symptoms and improve his quality of life. He began treatment at Hampshire Hospitals NHS Foundation Trust (HHFT), under Professor John Ramage, a Lead Clinician for the HHFT Gastroenterology Department and for the Centre of Excellence for Neuroendocrine Tumours, a collaboration between HHFT, King’s Health Partners and Kent Oncology Centre.
When Mr Verey began treatment, he came across research: “I was started on a drug which works by latching onto the tumours and reducing their ability to produce hormones. I had to inject myself with the drug two or three times a day until my consultant told me about a clinical trial.
“If eligible for the trial, I would be able to try a long-acting version of the drug. This version could last for 28 days but was being trialled because it was more expensive and complicated to administer. The long-acting drug was a lot more convenient and attractive and I could see nothing wrong with taking part in the trial. In the long-term, it might benefit other patients and would mean that I didn’t need to inject myself all the time, which was a much nicer regime.
“I had extra tests because I was on the trial and I could only see goodness in this because it told them more about my condition and it also gave them a good rundown of my general health. There weren’t any additional hospital appointments because they managed to combine all of the tests with my regular appointments.
“I was not initially offered surgery to remove my primary tumour because, at the time, there was little evidence about whether its removal would improve my outlook and there was a risk that surgery could compromise the blood supply to my gut.
“But by 2008, surgical techniques had improved and there was a growing body of statistical evidence that removal of the primary tumour correlated with longer survival. I met with a surgeon who thought she could remove my primary tumour without significant risk to the long-term function of my gut. The operation was a success.
“By 2010, despite the removal of my primary tumour, the secondary tumours in my liver had grown and my symptoms were becoming more severe. My consultant referred me to a surgeon who believed that it would be possible to remove most of the larger tumours in my liver in two operations. The operations involved careful removal of diseased tissue and preserving healthy tissue. It undoubtedly used the latest equipment and techniques and would only have been made possible by ongoing research.
“In 2012, I was lucky enough to have further treatment which targeted some of the smaller tumours that had grown in my liver. There were no significant side effects of the treatment and I had three years of freedom from symptoms. In the second half of 2019 my symptoms deteriorated quite a lot and I was offered, and received, a second treatment of the same kind that I had in 2012. So far, the signs are good, my symptoms are now on an improving trend. This treatment is generally used for late-stage colorectal cancer patients and they usually don't survive long enough to have a second treatment. There has been no study of patients having a second treatment, so although my treatment is not a study, it will at least be interesting to see how effective a second treatment is.”
Of the latest developments in research for neuroendocrine tumours, Professor John Ramage, said: “Mr Verey has been a stoical patient suffering from stage 4 NET for many years. He has the best personal collection of symptoms and quality of life measurements of any patient I know. With an IT background he is good at collecting data and charts his progress on excel spreadsheets with great diligence. Mr Verey has been involved in a number of national trials in NET which has improved our understanding of this underpublicized disease.
“Research is gathering pace but funding is a real issue, with far less money being raised for NET compared to other cancers. However, there are several trials supported by the NIHR that are completed, currently running or in the pipeline. I work with the NIHR NET subgroup which coordinates these trials and also with the NET patient Foundation, a national patient support group. I am currently UK chief investigator for the NETTER-R study, the pNET quality of Life study, and ASPEN (for small pancreatic NET). I am PI for a number of studies and have contributed data to many international studies over 25 years. I am currently working on collecting national incidence data in conjunction with the NET patient Foundation and Public Health England.”
“Research does make you an experienced patient,” adds Mr Verey. “I’ve been exceptionally lucky that my clinical nurse specialist and consultant have been the same throughout these 17 years. I see my clinical nurse specialist, Barbara, every four weeks, so I know her better than almost anyone except my wife.”
Barbara King, a Neuroendocrine Clinical Nurse Specialist and Research Nurse at HHFT said: “It is a privilege to be involved with Mr Verey’s care. He is an informed patient regarding his disease. He is a brilliant ambassador for research. He has spoken often to patient and professional groups on the importance of research and being involved in it. He gives his time freely to promote research and is always interested in new trials that are open to NET patients. At present, he is involved with the NET Patient Foundation in developing a patient app.”
On the importance of research, Mr Verey concludes: “Almost everyone is or will become dependent on the benefits of medical research, many people start to benefit even before they are born. Almost all the understanding and tools for the treatment and management of my disease has been developed through research since my birth, and quite a lot of it in this century since my diagnosis. Having benefited so much from research, I am more than willing to participate in research to benefit future patients.”
Mr Verey adds: “I come from an IT development background and you’ve always got to be looking for new ways of analysing data and seeing what we can learn. That’s why clinical research makes sense to me. Experience tells me collecting and analysing data is the way to learn and improve. Sometimes it may not be obvious initially why the data may be of value. Benefits may only come to future patients, but without the research we will never get the benefits, so it is best to adopt an altruistic view.”