Monday 21st December 2015
Mac Voice, the magazine for Macmillan professionals: Winter 2015
Three Macmillan professionals discuss pancreatic cancer, their roles, and initiatives they have introduced to improve care.
Philip Whelan on the role of a Macmillan CNS in pancreatic cancer care.
Pancreatic cancer is the fifth leading cause of cancer death in the UK. Prognosis remains poor, despite treatment advances, with average five-year survival remaining static at around 3 to 4%.
The vague signs and symptoms are difficult to detect. This frequently results in late diagnosis, often when secondary cancer is present or a primary tumour is locally advanced. Unfortunately, this means only 15% of people diagnosed are suitable for potentially curative surgical resection. Palliative chemotherapy is the mainstay of patients with advanced disease.
Communicating diagnosis and prognosis
Since 2009, I have worked as a Macmillan clinical nurse specialist in pancreatic cancer at the Royal Liverpool Hospital, a large tertiary referral centre for pancreatic disease.
As an autonomous practitioner, my role is diverse and challenging, yet thoroughly enjoyable. I provide physical, psychological and holistic care for people having major pancreatic surgery or palliative chemotherapy. I also support their families.
I am privileged to be involved at all stages of people’s cancer journeys. My role includes a particular focus on communicating diagnosis and prognosis.
Since 2010 I have introduced four nurse-led clinics, which run alongside traditional consultant clinics. This ensures a more efficient use of outpatient reviews and appointments.
In 2013, the nurse-led clinics were evaluated as part of a clinical audit of the CNS role. It showed that over six months, I saw 75% of patients alone and 25% in consultation with a clinician. Of patients I saw alone, 52% required referrals to other services, 59% required medication changes and 71% required further investigations, all of which I instigated and followed up.
Most of those seen jointly were new surgical patients, for whom CNS support was vital. In cases of new inoperable cancer or diagnoses of recurrence, the evaluation showed I often take on the role of breaking bad news, a responsibility traditionally perceived to be that of the senior medical clinician.
The results demonstrated the vital role of the Macmillan CNS in the complex management of people diagnosed with pancreatic cancer. It also showed that the CNS will take on increased responsibilities for post-operative surgical patients and those undergoing palliative treatment.
Karen Angel and Penny Kaye on dietary interventions
The average life expectancy for someone diagnosed with locally advanced inoperable pancreatic cancer is 9–12 months. In addition to a poor prognosis, this diagnosis is associated with weight loss and the inability to absorb nutrients.
This can result from the pancreas not working properly, or a blockage of digestive enzymes to the bowel. The pancreas produces millions of digestive enzymes each day, which help break down foods into components the body can absorb and use. When this function isn’t working properly, people can suffer side effects such as diarrhoea, steatorrhoea, weight loss, bloating, abdominal pain and wind.
Enzyme replacement therapy
In a 2013 study, patients given pancreatic enzyme replacement therapy (PERT) alongside palliative chemotherapy survived anaverage of 200 days longer than those treated solely with chemotherapy. It has also been shown that identifying weight loss and providing nutritional intervention are significant factors in influencing overall survival and quality of life for people with pancreatic cancer.
Using this knowledge, we worked with the multidisciplinary team (MDT) to highlight the importance of PERT and developed a dietetic treatment pathway. As part of this pathway, anyone diagnosed with inoperable pancreatic cancer should have access to a specialist oncology dietitian and be started on PERT as soon as possible.
Everyone diagnosed with pancreatic cancer is contacted and offered an appointment, with the aim of being seen within 10 working days. Before the appointment they are given a leaflet explaining why they would benefit from seeing a dietitian, a food diary and a dietetic quality of life questionnaire.
Patients are reviewed within 2–4 weeks and advised on further dietetic and PERT management as needed. If further symptom management is required the MDT is accessed.
‘I feel normal again’
A patient told us, ‘It’s such a relief to have had great support from the dietitian in helping me feel so much better with my food. I feel “normal” again now. My bowels are back to normal and I can even go out to eat with my family occasionally, which has meant so much to all of us’
Our main aim is to improve quality of life for people with pancreatic cancer. We also want to investigate the impact dietitians can have by providing nutritional therapy and managing PERT. We hope to gather the evidence of this from our dietetic quality of life questionnaires and evaluate the outcomes in the future in order to provide the best possible service locally.
A new edition of Macmillan’s patient information booklet Understanding cancer of the pancreas is available to order.
1. Cancer Research UK. Pancreatic Cancer Statistics.http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/pancreatic-cancer (accessed 16th July 2015).
2. Pancreatic Section of the British Society of Gastroenterology et al. Guidelines for the management of patients with pancreatic cancer periampullary and ampullary carcinomas. GUT. 2005. 54.
3. Neoptolemos, J.P et al. Effect of adjuvant chemotherapy with fluorouracil plus folinic acid or gemcitabine vs observation on survival in patients with resected periampullary adenocarcinoma: the ESPAC-3 periampullary cancer randomized trial. 2012. Journal of the American Medical Association. 308(2).
4. Kari B et al. Inoperable Pancreatic Cancer: Standard of Care. Oncology. Review article. November 15, 2007.
5. J.E. Dominguez-Munoz et al. Survival of patients with unresectable pancreatic cancer: Impact of the treatment of pancreatic exocrine insufficiency and malnutrition. Pancreatology. 2013. 13(4).
Email Philip Whelan, Macmillan CNS (HPB Cancers) at Royal Liverpool Hospital.
Email Karen Angel and Penny Kaye, Macmillan Specialist Dietitians at East Sussex Healthcare NHS Trust.