This is heartbreaking. But what's even worse is that teenagers like these guys receive the lowest funding of any age group, even though their survival rates have improved least. Here's how we can fix some of that.
Late last year, an exciting thing happened.
I managed to get medical students invited to the international adolescent and young adult cancer conference for the first time ever!
It's an area of oncology that's been neglected for a long time, despite the fact that there's a huge need. Contrary to popular notion, the incidence of adolescent and young adult (AYA) cancer is higher than that of paediatric ones. There are over 1000 cases in Australia alone per year. Yet despite this, both the rates of improvement, and funding, in comparison to childhood and adult cancers remains markedly lower.
Hence the excitement.
How do you get the knowledge gained from this out to as many medical professionals as possible, when little is being done by larger organisations? How do you make sure that less cancers are missed in their earlier phases, and that the needs specific to younger cancer patients, many around our age, are met? You make sure the next generation of doctors are aware of this.
Hence this article.
I guess the major takeaways from it can be organised under 3 banners. The science. The services. And the social, psychological and practical impacts of cancer on youth.
It’s important to appreciate that cancers affecting AYAs are starkly different to that seen in their younger and older counterparts. Even those that are similar tend to have different prognoses; Acute Lymphoblastic Leukaemias, despite having a very high cure rates in children, are much more deadly to youth, for instance. Similarly, many youth suffering from thyroid cancers have much more dire prognoses than older patients. Factors such as differing hormone levels, leading to different mutation profiles and reactions to treatment, and perhaps more sinister manifestations of cancers down genetic susceptibilities may be reasons for this. But other currently understudied factors exist too. As was pointed out by Olivia Watson of Sydney University, there is a “surprising discrepancy in some treatment outcomes in New Zealand”, pointing to the possibility of race affecting outcomes too.
The lack of knowledge further highlights another issue, the lack of trial knowledge, which stems from both lack of clinical trials focusing on AYAs and a more systemic one, in the deficiencies seen in data collection in cancer. The prior is a result of both the burden of disease of cancer being higher in older populations, and the lack of facilities. “Paediatric hospitals often having higher trial participation” due to better infrastructure highlights that this is an issue that can be fixed, and the government’s recent $7million investment in clinical trials for this age group is a step in the right direction, but more needs to be done on an international scale for results to be seen. The lack of sophisticated, or even complete data collection by cancer registries also poses a challenge to the collection of even epidemiological data, and it’s a challenge faced around the world. Many presenters lamented these shortcomings, but again, progress is being made. I was fortunate enough to sit in on a workshop after the congress with doctors from the US, UK and Australia, trying to make it easier to share data over national lines. Perhaps international cooperation will be the solution in the challenging climate of relatively low numbers of patients?
Of course, issues and priorities very different to those in other age groups are also pertinent, and often less appreciated by doctors and researchers in this field, for this population. Contrary to popular opinion, fertility is a major cause of distress amongst younger cancer patients, being a feature of even 12 to 13 year olds’ thoughts, and “considering sexuality” and “delicately exploring any functional issues” due to the impacts of cancer is also important, points out Sophia, an ex UNSW medical student, as it has “measurable impacts on quality of life”. Finally, survivorship is also a vital issue, especially in this population, with high levels of anxiety due to fear of relapse (often dubbed “scanxiety” by patients), disability and late effects of treatment, including secondary cancers, being huge factors. Indeed, much of this can be attributed to our lack of knowledge. As a presenter pointed out, low rates of trial participation by youth is likely causing either too high, or too low doses of chemotherapy being administered to patients, for identical cancers.
But there is hope. Not only in the future due to that government investment, but right now, with an exciting presentation being given on one hospital’s successful experiment of giving highly personalised treatment regimens based on patients’ own mutation profiles alone, drawing great applause. Especially remarkable was that the prescribed treatment was based, in many cases, off of other cancers’ trials. A step made necessary by the lack of appropriate treatments.
The services:Imagine having to pick, on the day after being told there is a high chance you may have to face your own mortality, whether you’d like to be treated in a paediatric, or regular hospital at the age of 16.
Beyond the outcome-related repercussions of your choice, are very real, and very important, other factors too. Whether or not you’ll be able to get access to a social worker familiar with schooling, or university admissions. Whether you’ll be able to see the same doctors, or be referred and treated inside the same hospital during your probable life-long follow up. Whether there is even a support network or buddy system, or even One. Other. Damned patient with whom you don’t have to verbally joust to avoid allusions to “how unfortunate” it is that you in particular are facing a disease their cousin had succumbed to themselves.
Again forgotten in many regards, the unique challenges of a life completely interrupted, academically or career-wise; issues like fertility-preservation and also that of palliative care, only add to this. Great examples were given of programs to make hospitals more youth, frankly, person-friendly environments, and many, such as opening up reliable wifi to patients and things like shared recreation centres where counsellors could also be stationed, could be done relatively cheaply. But others, such as fertility preservation, will require systemic change, which isn’t easy when there are challenges, such as the government’s proposal to reduce medicare rebates for fertility preservation. Little thought is given to AYA cancer patients in many sectors of health policy and service providence. But luckily, patient groups around the world are striving to fix that. And often, many of the services that do come into systems are pioneered (and often provided solely, as in the case of cancer psychological support services by CanTeen in Australia) by these groups. But systems are necessary to offer support still.
Interesting is how the interplay of differing health systems, differing classifications of what exactly “youth cancer” meant and differing types of providers, leads to different approaches. The UK, specifically, England, seems to be most ahead of the pack, with its public, regionally-zoned healthcare system allowing for the building and providing of services and treatment to be done from hospital specific cancer units. There are 28 of these, reasonably spread out around the nation. The US with very diverse systems, both state by state and hospital to hospital, would find it challenging to implement such a scheme, so it’s often up to hospitals to learn lessons from others, or, where that doesn’t work, for not-for-profits to pick up the slack, support wise. And in Australia, CanTeen has revolutionised itself to become a service provider, and with help from the government, has established the Youth Cancer Services network, seeking to unite as many young cancer patients as possible to youth cancer specialists in many fields, through strategic placement of staff in major cities. More focus on these, and more funding is indeed, necessary. But knowledge that these services exist by us, the future of this field, will ensure that those services will lead to less suffering.
Perhaps the most eye-opening part of this conference was revealed to us by one of the most inspiring. Palliative care is a topic last on many patients’ mind as they progress through their cancer journey, but it’s not only necessary for some, but very misunderstood too. As Stevie, a palliative care patient herself, put to the audience, it isn’t just something offered to patients to reduce suffering. It restores dignity. It improves functioning. And in many cases, it isn’t even necessary that you need to be dying to access, and benefit from it. Superior pain management is but one example of the benefits of involving palliative care physicians earlier than at day’s end. And the insights Stevie offered into the suffering faced by doctors too as their patients are taken all too young were remarkable. I myself spoke to those gathered and reminded them that no matter what the outcome, they can and will always be able to change lives. It wasn’t the medical decisions and prowess that made my doctors special. What made them special to me was the times they were there for me, beyond all that. Those times we talked about fishing before delving into a consult. When one doctor walked me to a biopsy on his way to another department. When my treating haematologist wrote a letter in to the UMAT board imploring them that I be allowed to sit my entrance exam. Those things changed my life. And I’ll always remember them. Forever. No matter what.
The social:Social and psychological impacts of disease are often most overlooked in treatment, but when considering the disruption to the crucial developmental and growth periods many in this age bracket are in, and the high rates of depression and suicide it suffers too, it becomes vital these issues are addressed.
Higher rates of depression are faced by patients and survivors of youth cancer, and also by their friends, siblings and parents, all too oft forgotten in day-to-day care. Though it’s impossible to fix every aspect of this, it’s important to, at the very least, acknowledge it, and refer out to specialists which as you now know do exist on this matter. Within Australia, often that’s provided by CanTeen.
Furthermore, risk taking behaviour is also markedly increased in this population, both generally, and specific to youth cancer patients, and so it becomes vitally important to not just be aware of this, but to also take every means possible to reach your patients. Lessons to medicine in general can be taken away from this, as one patient pointed out that they were “more likely to take medications regularly” if they were properly explained “why [they] had to take those medications”.
Indeed, doctors are responsible for much of the suffering faced by patients. And that’s reflected in both scientific studies, and also by a survey I took at a patient and family member conference prior to this one’s commencement.
This was but one response to those questions…
As you can see… it’s heart-breaking the impact of cancer on young people. Hell, it's heartbreaking for everyone. But as the kid in response 2 and I myself, a 3-time cancer survivor, now medical student can tell you first hand… the impact of being connected to and just talking to someone who’s been through what you have is immeasurable. This, the connection to services and simple friendship is literally the difference between pain and relief, anxiety and acceptance, even life and death for some. And all these things, we have this amazing privilege to be able to provide.
So if you take anything away from this, please let it be that.