The survivorship cancer care gap

by SATCC Trustee and Founder and CEO of Perci Health, Kelly McCabe.

Kelly has more than 15 years of experience working in oncology care, having previously been COO of the HCA International Cancer Network and worked as a specialist oncology dietitian in the NHS. Now the Founder and CEO of Perci Health, a virtual cancer survivorship clinic, she has also published research on cancer treatment tolerance and co-authored a fundraising recipe book called Recipes for Life. Here, she writes about one of the most unspoken elements of cancer – the survivorship care gap, from what it is to how holistic wellness practitioners can make a difference.

The most important trends in cancer

Cancer is a widely discussed topic with one in two people expected to experience it within their lifetime. Within that, one of the most important trends we’re seeing is not only increasing incidence of cancer, but growing rates of cancer in younger people – classed as those between the ages of 14 and 50. These cases have increased globally by around 79% between 1990 and 2019.

On a more positive note, we’re also seeing huge improvements in the effectiveness of treatment – survival rates have rapidly changed over 30 years. In the 1970s survival rates for all types of cancer were very low, whereas now, for more common cancers, the rates of survival at five years are around 90% if it’s caught early (for example, for breast cancer and prostate cancer). Meanwhile, around 58% of people will live 10 years or more after a cancer diagnosis, and it’s changing all the time.

What we know is that more people will get cancer going forward, but more people will catch it early and live beyond it.  The global Project Zero ambition, led by AstraZeneca, aims to eliminate cancer as a cause of death in the future. That’s an important statement, because while we read a lot about cancer prevention, we’re unlikely to ever stop people from getting it as not all cancers are preventable – around 60% cancers are the result of a genetic risk factor and/or age. Nonetheless, we will be able to diagnose it earlier, treat it, and it will become a condition that people can live with.

That said, millions of people in the UK will be living with a prior cancer diagnosis for many years and many may be on maintenance treatment for the rest of their lives. That includes experiencing the side effects of cancer and cancer treatments, and the anxiety of constant surveillance, including the impact on mental health. That’s where survivorship care comes in.

What is survivorship and survivorship care?

The National Cancer Institute (NCI), defines a “cancer survivor” as anyone diagnosed with cancer, from the time of diagnosis throughout their life.

The important thing about this term is that we don’t necessarily use it to describe an individual (i.e., as a ‘survivor’), but at Perci Health our business is about a survivorship care model. That means our work is for anyone who’s had a cancer diagnosis at any point in the past, whether they are cancer free or living with it now.

Survivorship care encompasses all care from the day of diagnosis, not from the end of cancer treatment, and it covers everything from physical, to emotional, social, financial support, and more, as well as helping to manage the side effects of treatment, whether they are long-term or delayed.

For example, at Perci Health we include screening for recurrence and managing comorbidities, as well as things like promoting healthy behaviours, and optimising lifestyle to lower risk of future cancers. Spas can also have an important role in promoting healthy behaviours and self-care.

Side effects of cancer and cancer treatment

There are lots of different side effects of different cancers and cancer treatments, many of which therapists trained on SATCC approved courses will be aware of. With some cancers, long-term maintenance might include staying on hormone therapies for many years, but we know that lots of people stop taking medication or reduce their dose to try to optimise their quality of life when the side effects are impacting their daily experiences. If we can better manage those side effects, then the impact is plausibly that those individuals will be more likely to stay on the treatment, thereby improving the chances for survival outcomes. Some of the more universal side effects include:

Fatigue

Almost all cancer patients experience a degree of cancer-related fatigue, and that’s a really complex issue to address. It can be very hard to manage and it’s not like a fatigue that anyone else will have experienced. However, practical things that have been shown to help include movement, which might seem counterintuitive but the more you move the better the fatigue score typically is. Physiotherapists and CBT practitioners are great for supporting people with cancer-related fatigue.

Fear of cancer recurrence

The fear of cancer recurrence is very real and almost universal amongst cancer patients. They often feel a heightened anxiety around any pain or twinge that another person might dismiss. Typically anxiety is at its peak when someone has an upcoming scan or blood test. This is where tools for mind control such as meditation and spa treatments, can be helpful to people, giving them a refuge to help them manage their feelings.

Cognitive impairment

Cognitive impairment is especially common after certain types of chemotherapy, causing   changes in memory and the ability to concentrate. This is disconcerting for anyone, but it’s particularly challenging for people who may be trying to get back to work or look after young families and no longer trust themselves in the same way they did before. Therapists can have an important role to play in rebuilding that trust in their own mind and body.

Skin issues

Lots of cancer treatments cause skin issues from redness, dryness and cracking to changes in pigment. That can make an individual’s quality of life very challenging each day if they feel physically uncomfortable or if they feel their skin doesn’t look like it used to. Skincare specialist, Marian Hook, has offered some incredibly helpful advice in her article on taking care of skin after a cancer diagnosis, and the SATCC has an ambition to create a directory of clinically safe products that help target some of these side effects.

Physical changes

Changes in body confidence and an individual’s sense of identity are also amongst the most reported challenges faced by cancer patients, both during and after treatment. At Perci Health we do a lot to support people as they go back to work – many might choose not to disclose their cancer diagnosis but some physical changes make that hard to do, such as hair loss, weight changes, and surgical changes like a stoma or mastectomy. Lots of people say that they feel like a very different person after cancer, and those physical changes can take away an individual’s autonomy when it comes to deciding if, or how, they communicate their experiences. Typically all these things are poorly managed by the system.

The gaps in traditional cancer survivorship care

There’s a huge gap in traditional care when it comes to survivorship – it’s deprioritised in terms of research funding, innovation and investment. Most of the focus is on diagnostics and new treatments. Another factor is that it’s a relatively new medical field – the term ‘survivorship’ emerged in the ‘90s, which is exciting as there’s so much opportunity to do more, but it also means there really is a gap in services.

For the vast majority of people in the UK, and globally, when it comes to the end of their treatment they’re referred back to their GP. They may see an oncologist once a year but the rest of their access to healthcare is with their GP who is unlikely to be a specialist in cancer, their specific cancer treatment, and who’s unlikely to have the time to look at the impact the treatment might have had holistically.

To put that in perspective, at Perci Health, we do a holistic needs assessment when someone is referred to us, looking at the physical, psychological and practical. On average, the number of needs a person has is 24. That might be things like fatigue, low mood, intimacy difficulties, challenges returning to work, all the way through to clinical things like pain and lymphedema.

If you have 24 things to handle, your GP isn’t going to be able to address them all or necessarily join the dots between them. There are wonderful people who try to plug that gap, such as cancer charities, and they do an amazing job providing information and services. However, it’s a huge problem that will affect four million people in the UK by 2030, so we can’t rely on charities to meet that need. We all have a responsibility to try to address it.

How holistic health providers can address cancer survivorship care gaps

In many instances, spa therapists are amongst the first people that a person shows their new body to following a cancer diagnosis and treatment. Therefore, the way that situation is handled can play a powerful role in helping them to rebuild their trust and confidence both in themselves, and in other peoples’ reactions.

We do a lot of work with employers when it comes to managing conversations around cancer, from what to say and not to say to managing your own reactions and emotions, not downplaying the individual’s experience but not focusing on it unnecessarily either. For therapists there are lots of subtle ways in which their interaction with a client can help them. Part of it is about the acceptance of a kind touch, and part of it is providing a safe space to relax, but there’s also an advocacy element. For example, this is an environment in which someone might tell you something they haven’t yet told their doctor, and if you have built a relationship of trust you may be able to signpost them back into the healthcare system to make sure they get things checked and help prevent recurrence.

There’s also a general promotion of healthy behaviours that can happen in spa environments. It’s a window of opportunity where it can be appropriate to talk about the role of exercise, managing stress, smoking, alcohol, or making positive recommendations for things to try such as yoga and meditation.

The reason the work the SATCC is doing is so important is that we are seeing more people in the spa sector with a history of cancer than ever before, and you can’t always tell. There are more people being diagnosed with cancer and living longer with it or beyond it, so it’s a priority to invest in their care for the practicality of the business, but also because spas can play an important role in supporting individuals, and the healthcare system as a whole.

If you are a spa, salon or independent therapist looking to arrange training for yourself or your team to allow you to treat those touched by cancer, then we are delighted to be able to introduce you to SATCC Approved Training Providers.

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