“I'm like a Lexus with a one-gallon tank: Wherever I go and whatever I do, I run out of gas while others - even my 81-year-old mother - are still going strong. It's more than just being sleepy; I am headachy and irritable. By mid afternoon, my IQ seems to be slipping 10 points per hour…if I keep pushing past my limits, I get flustered easily and appear angry when I'm not. It's hard to think, act or be like the real me,” says Dr Wendy Harpham - a well-known American doctor, author and cancer survivor – describing her daily experience living with what she calls ‘post-cancer fatigue’.
Patients expect to feel tired, weak or exhausted while undergoing rigorous cancer treatment, such as high-dose radiation or chemotherapy requiring bone marrow transplant, and they are cautioned that these symptoms may persist for a year or more.
But many are unprepared for the reality that about one-third of cancer survivors will continue to experience severe chronic fatigue for many months and even years after curative treatment.
Numerous studies have demonstrated that fatigue is a significant issue long into survivorship; ranging from five to ten years in 34% of breast cancer survivors to between six and18 years in more than half (56%) of long-term survivors of bone marrow transplantation.
Fatigue is also identified as one of the three most negative issues affecting quality of life in post treatment survivors.
While there are numerous theories to explain the etiology of fatigue in the patient undergoing treatment, and to describe the impact of that treatment on quality of life, many do not apply to the post-treatment population. Nonetheless, chronic fatigue for the cancer survivor can have a serious impact on normal life, preventing people from returning to work, leisure activities and socialising with friends.
It may also trigger a range of negative emotions including sadness, anxiety, irritability and, in some cases, guilt or depression.
Cancer-related fatigue is a common problem seen by Dr Sonya Collier, Principal Clinical Psychologist and her colleague Dr Anne-Marie O’Dwyer, Consultant Psychiatrist, at the Psycho-oncology Department in St James’ Hospital – the first multi-disciplinary service of its kind in Ireland, opened in 2003, which pioneered an innovative model of care to address the psychological problems that can emerge when a patient is diagnosed with cancer.
Over the course of almost ten years helping many thousands of patients, they identified long-term fatigue in cancer survivors as a major issue that is frequently under reported, under diagnosed and under treated.
|Drs Sonya Collier (left) and Anne Marie O'Dwyer|
The pair responded by developing the first known self-help programme for persistent cancer-related fatigue in the world, which was launched earlier this year.
Entitled “Understanding and Managing Persistent Cancer-Related Fatigue”, the easy-to-use manual and accompanying DVD is structured on cognitive behavioural therapy (CBT) techniques and is made up of eight different chapters tackling issues such as inactivity, low mood, sleep problems, worry and reclaiming life after cancer.
Irish rugby star Gordon D’Arcy and well-known TV personalities Eddie Hobbs, Rachel Allen, Kathryn Thomas, Miriam O’Callaghan and Pat Kenny, along with cancer experts and former patients from St James’s Hospital, all contributed to the accompanying DVD to introduce, summarise and explain each chapter of the manual.
“When we first set up the psycho-oncology service in St James’s, patients were being referred to me for a variety of problems, such as low mood, anxiety or body image problems, as would happen in a cancer setting, but there was frequently this common denominator which was a problem with persistent fatigue,” explains Dr Collier.
“In CBT, often one of the first exercises we do is we work with the patient to create a ‘problems and goals’ list, then we look at how we might try to solve them. Repeatedly fatigue was coming up on these lists and it was quite clear that the problems were overlapping – there were cases where the fatigue was actually causing the low mood and other times the depression was causing the fatigue.
“It was quite clear to me that some of the problems that I was use to working with, such as persistent worry following cancer - fear that it was going to come back - when I started treating those problems a lot of the fatigue issues would lift. The same with insomnia; 50% of breast cancer patients suffer from insomnia, but again, when I started working on their insomnia, the fatigue started to lift. Treatment in one area was impacting positively on the fatigue and we became very aware that this is a multi-factorial problem.”
The absence of textbooks and relative dearth of published research in the then embryonic subspecialty of psycho-oncology meant that Dr Collier had to adapt techniques from within established psychotherapeutic practice in devising strategies that worked for her patients. Over time, she could see which approaches worked on particular patients and on specific difficulties to help alleviate the ever-present and often debilitating fatigue.
“It was through working individually with patients that we developed this programme, and we could see that it was working very well, to the point that we felt the next logical step was the development of a home-based intervention for patient with mild to moderate problems,” she says.
“It’s interesting, when I started looking at this area first, back in 2003, the only real suggested intervention was medication for patients with persistent fatigue following curative treatment,” Dr Collier adds. “But treatment guidelines have since changed and now the first level intervention in the National Comprehensive Cancer Network’s (NCCC) guidelines is exercise and psychological therapy, namely CBT.”
She highlights a Dutch study that was pivotal in the re-evaluation of the NCCN guidelines. Researchers from the Radboud University Nijmegen Medical Centre in the Netherlands were among the first to demonstrate the effectiveness of CBT especially designed for fatigue in cancer survivors. Clinically significant improvement for the CBT group compared with the waiting list group was seen in fatigue severity (54% versus 4% of the patients, respectively) and in functional impairment (50% versus 18% of the patients, respectively). The study was published in the Journal of Clinical Oncology, 2006.
“We are a national centre here in St James’s and people come to us from every corner of the country – Cork, Kerry, Donegal, and the Aran Islands. These are people who have very limited amounts of energy in the first instance and they are using huge amounts of that energy to get up to Dublin and get home again, on the train or trying to battle traffic. Some have not been able to attend because they simply couldn’t manage the journey.
“The problem we were struck with was we felt their persistent fatigue was very treatable, it was something that we could help with, yet psycho-oncology is still a relatively scarce resource in Ireland. So we felt that if we could develop our programme into a self-help version it would be an effective intervention for people with mild to moderate problems,” says Dr Collier, pointing out that patients with more severe difficulties would still require one to one therapy.
The resulting and recently launched self-help programme consists of two main components - a workbook-style manual and a DVD - that are used in conjunction, chapter by chapter.
Dr Collier elucidates: “The patient is to use the manual and the DVD in a very structured way, which is made clear in the introduction to the manual. The entire programme is eight chapters long. Each chapter on the DVD has a corresponding chapter in the manual, similar to a distance-learning programme.
“Each chapter has myself and Ann-Marie explaining the programme. We also have one of the cancer consultants talking about the particular problem, and we have a contribution by an Irish celebrity that has some connection with the topic. For example, Rachel Allen does the section on good nutrition following cancer, Gordon D’Arcy does the stepped return to activity following injury or illness, and Eddie Hobbs does the energy economics piece. We’re hoping this approach will help engage people in the programme and make it more interesting for them.”
Although many studies document the incidence of fatigue in those who are no longer receiving cancer treatment, the specific mechanism of fatigue remains unknown. Researchers have suggested that such fatigue may be due to persistent activation of the immune system or to other factors such as late effects of treatment on major organ systems.
“It’s one of those problems that is hard to unpick, it is multifactoral; for different people it can be different things. In some people there may be a medical problem related to anaemia, for example, which can be treated once diagnosed by a doctor. For other patients, there are a whole host of factors that are feeding into it, some of those factors are psychological and that’s where our programme comes in,” she says.
“Most patients become very unfit and de-conditioned as a result of their treatment and being out of action for so long. Some are anxious to reclaim their old lives and try to do too much too soon; they wait an arbitrary period of time - it could be one month, six months or a year, depending on the person - and then they hurl themselves back into action and expect to be able to perform in the way that they did before, but of course their bodies can’t cope.
“Others sit and wait very patiently for their energy to return. They’re sitting, minding their energy so carefully but the more they do that the more they become deconditioned, getting less and less fit - we call this ‘use it or lose it’ economics - their beliefs are interfering with getting back and getting active again.
“In the self-help programme we try to educate people around this concept of energy economics and really encourage people to go back to activity in a stepped approach, little by little.”
She says it’s universal that cancer survivors ask why, now that their disease is gone, can they not return to their ‘normal’ life. “Questions like this are a huge part of what the manual focus on. Our beliefs, expectations and how we think about things can actually feed into vicious cycles of fatigue, anxiety and low mood, which can all negatively impact our quality of life. Each chapter in the manual offers cognitive behaviour techniques to help the patient overcome these.”
The self-help programme has already received praise from international experts in the field of psycho-oncology. Professor William Breitbart, Chief of the Psychiatry Service at the world’s oldest and largest private cancer centre, the Memorial Sloan Kettering Cancer Centre in New York described the programme as “incredibly comprehensive and extraordinarily helpful, full of practical information and interventions”.
Specifically designed for patients who are disease-free and who completed their treatment for cancer at least six months previous, the manual and DVD package is being distributed to regional oncology units and their patients nationwide, thanks to a funding from Roche Products Ireland.
Dr Collier and Dr O’Dwyer are hopeful that their home-based intervention will provide cancer survivors with information and strategies that may help them to better understand and manage their fatigue.
|Dr Wendy Harpham|
In her book After Cancer, Dr Harpham, who was diagnosed in 1990 with non-Hodgkin’s lymphoma and has since struggled with limited stamina and fatigue, reminds each patient that their recovery pattern is unique.
She advises survivors to work towards developing a new sense of well being and good health, as opposed to trying to get back to where they were before cancer, and to focus on ways to improve energy levels:
“Post cancer fatigue is one of the after effects that requires patience and hopefulness.”