I was invited to attend the inaugural cancer survivorship conference in Brussels—at the time our interests aligned (and indeed still do). The conference felt different with patient groups, bankers, actuaries and even royalty alongside all the usual suspects. I left feeling hugely positive about what could be achieved with governmental and organisational backing. However this was in 2014 and as we all realise the world is now a different place.
The cancer strategic direction has turned more to personalised medicine and potentially a focus on immuno-oncology. Blockbuster drugs and science will always make good headlines, but for many patients are diagnosed, treated, and cured of their disease and have to live with the sequelae of treatment. This goes beyond follow up appointments and blood tests, fear of recurrence, and into resuming normal life with work, family etc.
Figures for those living with or beyond cancer “survivors” will vary depending on how you define it but conservatively 3-5 million in Europe. The largest numerical group this happens in is breast cancer – you’re diagnosed with cancer but it is picked up early and treated usually with a combination of things and you are cured. I do not mean to minimise this but for many this is their “journey.”
As a result if you google any support groups or look on social media there are a myriad of people to turn to for advice and practical help. There is a hashtag #bcsm (breast cancer social media) , indeed there is a whole oncology ontology for every type of cancer and treatment. This has been produced by my learned virtual colleague Matt Katz (@subatomicdoc). There is a survivor perspective provided by Marie Ennis O’Connor (@JBBC) amongst others. I have been particularly struck by these aspects of being engaged in healthcare social media.
America will always do things bigger and better—MD Anderson have a bell that’s rung every time someone completes treatment , the American cancer society has a national survivors day with tips for health promotion alongside. We in the UK adopted Livestrong for a time with the ubiquitous wearing of a yellow bracelet. We also had the awareness raising Movember and annual moon walks and endless charitable events.
I don’t think there is a lack of awareness of the impact that cancer has on our lives more broadly—the many charities see to that. There is a specific awareness of the needs of those who are living beyond cancer—even the term survivor has helpful connotations akin to the battle and war metaphors used when “fighting” but I use the term as at least it is recognised widely.
There is a sense that most responsibility falls on the individual so far and perhaps this is true but there is a professional onus too. The last health care professional you may see before being discharged back to your GP is variable—surgeon, oncologist, clinical nurse specialist and so on.
There is also an assumption everyone needs the same things and degree of follow up. This is slowly changing but the national strategy did not address this in detail although Macmillan have encouraged the use of individualised treatment summaries and plans. There have been no significant changes to this since 2014. The onus falls to the patient & once again to primary care. The level of knowledge has increased about the medical effects of treatment such as on the heart and bone density with well-funded cohort studies. However in practice the links back to the necessary services within secondary care are haphazard at best if several years have elapsed.
Best practice means an individualised contact through a CNS or designated support worker but the availability varies and initiatives come and go. This is much more rigorously enforced during cancer treatment and the benefits on patient reported outcomes are well recognised through case studies and targeted commissioning.
I would like to see the same rigour applied beyond the immediate end of treatment and given the funding it needs. I don’t need to attend another conference but facilitating further collaboration nationally and indeed internationally would help. This isn’t about updating a strategy or updating NICE guidance to promote supportive care or health behaviours.
This is recognising the impact that over 1 million people in the UK alone who have been successfully treated for cancer and are resuming their lives and who need coherent guidance and support. It is too important to be left to the engaged connected communities or to a campaign that sparks the public’s imagination. Nor can we ask GPs to manage the complex range of problems in primary care.
I appreciate there are other life events or diseases that can have a similar impact such as heart disease but there is not the spectrum of ages and sheer numbers that are affected by cancer and its treatment.
I am not calling for another hashtag, report or necessarily more money but to put cancer survivorship back high up on the agenda as either directly or indirectly its impact is immense.
Oliver Minton is a consultant in palliative medicine with an academic interest in the long term effects of cancer treatment. He tweets @drol007
Competing interests: I am Macmillan consultant and secondary care adviser and the trust is funded for one day a month for me to undertake this.