War on Cancer

Dealing with the aftermath of cancer

Prof Jane Maher - Joint Chief Medical Officer, Macmillan Cancer Support

The issues I’m going to address is if we’re going to have a war on cancer you have to have a reconstruction plan and the more people who survive the more you need to pay attention to that reconstruction plan to make sure that people get their life back, at one end, and that are appropriately supported at the other.

What are the key priorities where survivorship is concerned?

One of the first key priorities is understanding that the cancer story has changed, understanding that there are different sorts of cancer. So there’s one group of cancer where the majority are going to live about ten years where really we need to focus on recovering after anti-cancer treatment and looking at the impact of cancer treatment on other illnesses in the future. The second group of cancer are people who currently live less than two years, where the real focus is early diagnosis and making sure that they have access to new treatments but also have access to specialist palliative care. Then there’s a middle group of cancers, which are growing, where you may have an apparently successful treatment, a gap of three or four years, and then a new recurrence, for example hormone sensitive breast cancer, hormone sensitive prostate cancer. In this case you may have active cancer and multiple lines of treatment with difficult decisions at each point in order to decide how to live your life and have the best quality of life.

So the first thing that one needs to recognise is that cancer is complicated and that there will be different interventions for the different groups of cancer. Now, if we focus on the first group of cancer, which is probably the largest group making up the largest proportion of the 2.5 million cancer survivors, we need to think about a really effective recovery package after anti-cancer treatment. So we need to make sure that they’re properly assessed and there is a good conversation between the healthcare professional and patients which is based on an assessment of their needs, including financial and social and other needs than just the medical needs. So, a good conversation. We need to make sure that a summary of the treatment is sent to the generalist doctor so the generalist doctor, the GP, understands what the impact of anti-cancer treatment is going to be on future illness so that then lifestyle change which is appropriate for the cancer patient, such as physical exercise, stopping smoking, practical things are addressed by the appropriate doctor. We need an appropriate educational intervention which can be done in a group so that the patient and their family know what might happen next. So a recovery package is really important in terms of long-term survivorship.

We know that people who are going to have to have difficult decisions at the time of recurrence need appropriate support and we know if they have a specialist nurse or equivalent during that decision-making process they are more likely to be informed and they are more likely to be able to make the difficult decisions. So we need to make sure that appropriate support is in place too.

How can we deal with the increased costs associated with survivorship?

There are two things we need to think about here. The first is we know that there are a lot of interventions in the survivorship population which don’t add value. We know that a lot of patients with breast cancer are coming to hospital and having follow-up appointments which take a lot of time out of their life but don’t necessarily either pick up recurrence or help with the long-term consequences of treatment. We know from the National Cancer Survivorship Initiative and, more recently, from the Macmillan Northern Ireland partnership that it is possible for, for example, breast cancer patients with a proper recovery package not to require the hospital based follow-up which releases resource and enables the patients to have the appropriate recovery package. So it’s making sure that you use resources appropriately.

The second thing in terms of helping with cost is to make sure that the right patients have the right treatments. So we know, for example, that early specialist palliative care in patients with advanced disease can significantly reduce hospital admissions. We also know that in some cases appropriate specialist palliative care can actually improve survival. So that allows a much more nuanced and balanced discussion with patients to avoid futile over-treatment at the end of life while enabling new drugs to be tested.

Is there anything else you’d like to add?

Many patients with cancer now will have other comorbidities. So we know that 50% of cancer patients will have either heart disease or hypertension; a significant number will have arthritis or diabetes. But most randomised controlled trials don’t include patients with comorbidities so that you can get a disproportionate view of the benefits of treatment because these comorbidities aren’t included. So it’s really important that we have real life data of patients with comorbidities in order to make proper judgements about the impact of new treatments.

The second point I’d like to make is we know that one in four people who are surviving cancer will be living with the consequences of anti-cancer treatment. Currently we are not measuring those things and we have to move from thinking just about the big things like second malignancy and cardiovascular disease and bone fracture, to the small things which make a difference between whether older people remain independent and younger people get their lives back. So things like fatigue and bowel control, which are not the big things, not the big toxicities, but those things may make the difference between whether people get their lives back or whether people maintain their independence. So we need to be measuring the small things as a result of anti-cancer treatment and the impact that they have on quality of life.

Does this require more money from the government?

There is no question that if the National Cancer Plan were fully implemented and appropriately resourced it would improve care for cancer patients. So that is an important factor. But it’s also important to know that small things that don’t cost a lot of money can significantly improve quality of life. The example I always use is that in the UK there is a scheme for toilets, lavatories, to be available to people who have a key if they have a medical problem. One in five patients with colorectal cancer will have bowel problems, that’s what keeps them at home. If you teach oncologists or colorectal surgeons, the majority of people don’t know about that. So that’s a piece of information which could be given to everybody which could revolutionise people’s lives. So small things sometimes can make a difference which don’t cost money, it just requires people to recognise that these things are important.