Shining the spotlight on the late-effects of cancer.

By @DebbieProvanRD and colleagues

As I said during the first blog in the September #takeover there is a lot of great work going on amongst Scottish AHPs within the field of cancer rehabilitation. However, as I also stated previously there is still much to be done. Over the last week I have been reminded of this fact by another blogger; I have also been reminded that team work spurs on collaboration and drives innovation. As a result of this, this week’s blog will bring together the statistics, the research, the service developments and the personal experiences of a fellow blogger, to showcase where we are with managing the late-effects of cancer.

The statistics and the research

In 2011, a Macmillan report told us more than 4 in 10 of us would get cancer, and in 2012 their research revealed that the number of people living with cancer in the UK would double to 4million over the next 20 years. This year Macmillan highlighted that by 2020 almost 1 in 2 of us will get cancer in our lifetime, however almost 4 in 10 of those will not die from it.

While it is clearly good news that more people are surviving cancer, the flip-side if the coin is that at least 1 in 4 of those living with cancer (around 500,000 people in the UK) face poor health and/or disability after cancer treatment.

Whilst many of those treated for cancer return, more or less, to the same level of health and wellbeing they enjoyed before their diagnosis, a significant proportion experience a wide range of long-term problems. We call these the ‘late effects’ of cancer, as they tend to become apparent after treatment has ended, and the problems can include bowel or urinary incontinence, cancer related fatigue, osteoporosis, lymphoedema, weight gain, heart problems or sexual difficulties, to name but a few. The consequences of cancer and its treatment can also affect much more than just a person’s physical health, with many survivors reporting feelings of isolation, a lack of confidence and an inability to continue working, which often leads to financial difficulties as well as further isolation. As “Cured – but at what cost?” reveals, for these patients, a cure comes with a heavy and often unexpected cost.

The personal experience

A few weeks ago I read a blog by Chris Lewis (@christheeagle1) who experienced first-hand the feelings of isolation which come from a cancer diagnosis. His blog post, entitled “Are we prepared for increasing survivorship?” really got me thinking about all of the work we still have to do within the field of cancer rehabilitation; this was despite the fact I was well aware of the statistics rhymed off to you in the paragraphs above.

Within Chris’ blog he talked about the impact of a diagnosis and treatment on an individual’s career and the resultant feelings of hopelessness, the financial concerns and the knock-on effect on domestic circumstances. He also talks about the potential solutions such as counselling, information provided by charities and forums; however he quite rightly points out that “these facilities are rarely ‘joined up’ and tend to be a ‘one size fits all’ despite the fact everyone’s circumstances are unique”.

This again brings me back to the first blog in the cancer rehabilitation #takeover series and my reference to the work AHPs and other health and social care professionals are involved in called ‘Transforming Care After Treatment’ (TCAT). TCAT aims to:

•  initiate and embed an integrated and sustainable approach to care
• shift the focus from treating cancer to promoting health and well-being amongst those affected
• create a culture of confidence in patients and professionals, which supports people to regain control of their lives, facilitates self-management, develops new approaches to surveillance and reduces unnecessary follow-up
• facilities the establishment of shared decision-making with patients in cancer follow-up programmes, and
• promote the co-design of high quality, safe and person-centred care

And I re-iterate the fact that it is vitally important we work together, share learning, innovate and collaborate, so that 60% of cancer survivors no longer feel they have unmet psychological or physical needs.

Current practice aimed at limiting and managing the late-effects of cancer

A radiographer-led late-effects clinic

In January 2008 Maureen Thomson started her role as a Consultant Therapy Radiographer at the Beatson West of Scotland Cancer Centre. This was the first Consultant Radiographer post in Scotland and she felt that professionally all eyes were on her to make the role a success. Here Maureen tells us a little bit about her role:

9 months after my appointment after much research, training and development of our service, we treated our first patient with Intensity Modulated Radiotherapy (IMRT), a very advanced and complicated technique which is beneficial to patients for 2 reasons. The first is it gives better disease coverage, and therefore a better chance of controlling the disease; the second is that with this technique we can reduce the late-effects associated with radiotherapy to the head and neck area, and so we should positively impact upon the quality of life of those who have to undergo this often gruelling form of cancer treatment.

At this time I had decided to embark on a Professional Doctorate and as part of my work I started to monitor the late effects of IMRT to ensure that our results matched the evidence base and our patients were truly benefiting from this new and emerging treatment. Then in 2009 my team set up a dedicated late toxicity follow-up clinic to monitor our patients. Two years after the clinic began further changes in head and neck oncology meant I could be joined by a senior oncologist and together we opened the clinic to include all patients who had radiotherapy to the head and neck area, not only those treated by IMRT. Since then our clinic has grown from strength to strength and 2years on we are much more able to support our patients.  Sharing our work has also meany uur template has been used by other clinical teams within the centre and similar clinics have been introduced for other patient groups.

Advances in Lymphoedema management

Lymphoedema is a condition characterised by swelling, often of a limb but can be elsewhere in the body. It is often slow to develop and does not tend to reduce over night or when elevated. It can develop after cancer treatment or it can be completely unconnected with cancer. Lymphoedema can cause discomfort, problems with the skin and with movement or other problems, and although it cannot be completely cured at present, new research is improving care. This means that for many, lymphoedema can be very well-managed.

The Lymphoedema Scotland website has been developed for health care professionals, carers of those with lymphoedema and people who have been diagnosed with lymphoedema with the aim of improving care and supporting self-management. The website is maintained by Rhian Davies (@LymphoedemaUni), Macmillan University Teacher and Chartered Physiotherapist at the University of Glasgow who is also doing a PhD on modelling the process of developing a website which meets the education needs identified by general health professionals. Further to this Rhian is developing a short self-assessment tool for men who have lymphoedema following treatment for genito-urinary cancer. Its purpose is to see if men can self-identify early signs of lymphoedema in the lower limbs or genitalia in the same way that has been useful in breast cancer related lymphoedema.

In addition to these resources, the Macmillan Lymphoedema Project Scotland has published the 2nd edition of Top Tips for Lymphoedema. These were developed with patients across Scotland.

Post-treatment weight gain in breast cancer

In 2004 the Breast – Activity & Healthy Eating after Diagnosis study (B-AHEAD) highlighted that weight gain after a diagnosis of breast cancer is not only common, but also has negative consequences:

• Approximately 70% of those treated for breast cancer with adjuvant therapy will gain weight
• Obesity, weight gain & lack of exercise increase risk of death from breast cancer
• Post-diagnostic weight gain increases the risk of other cancers and death from co-morbidities by up to 50%
• Weight is a major concern to patients

As a result of this NHS Ayrshire and Arran’s dietetic department, with the support of Macmillan Cancer Support and Ayrshire Cancer Support, are now developing weight management services for cancer survivors. NHS Ayrshire and Arran are also continuing to deliver their multi-disciplinary cancer rehabilitation programme for patients undergoing treatment and those with complex needs; and they are looking to develop cancer rehabilitation classe,s for those who have finished treatment, with local authority leisure services over the coming year.

Final Thoughts

From Chris and his blog…. “We need to approach the problems of cancer, in a much more ‘holistic’ way. After all, our physical health is affected by our mental health, and if we are anxious about issues outside the hospital, that is going to affect our general well-being.”

From Ciaran Devane via Cured-but at what cost?…. “It is good that we are curing more people of cancer. But we have to recognise ‘not dying’ is not the same as ‘being well’. No one should face the often severe long-term effects of cancer alone. And if we can gather better evidence and build more responsive services, no one will.”

From me….. Rehabilitation is fundamental to high quality cancer care and can no longer be viewed as an added extra. It is an essential element of care which enables individuals to make the most of their lives, maximise the outcomes of their treatment and minimise its side effects; and it also has a role to play in public health agendas such as nutrition, obesity and physical activity.

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