Dr Rachel Hughes shares her enthusiasm for the WA Youth Cancer Service.
About 110 young people aged 15-25 are diagnosed in WA with cancer each year and most come to the attention of the WA Youth Cancer Service. Dr Rachel Hughes is the lead clinician. She said that without age-targeted services, these young people run the risk of falling through the cracks. While brain development has reached the point where most 25-year-olds can fully plan and navigate complex health problems, teenagers at the other end of this cohort have quite different needs.
The YCS teamThe adolescent-young-adult (AYA) group has other sobering features. “It’s an age group that has a more challenging group of tumours with a need for specialised treatment approaches,” Rachel pointed out.
“A very distinct array of tumours peak in their age group – some of the sarcomas, Hodgkin’s lymphoma, some of the leukaemias – but the most common tumours are melanoma, then gonadal germ cell tumours (testicular and ovarian), Hodgkin’s, and thyroid cancer.”
Cancer survival rates
“The overall cancer survival for the age group is 85-88%, however, the AYA cohort has peak incidences of some of the high mortality tumours such as the sarcomas and brain tumours, where survival can be lower than 70%. So they are very morbid tumours.”
“Something about the biology of young people gives them a poorer survival. We know that some of the AYA leukaemias demonstrate more unfavourable cytogenetic types that benefit from more intensive treatment.”
Diagnostic delays also occur more often, for a variety of reasons, some related to a ‘bullet proof’ mentality at this age.
“Young people do appreciate risk but are still likely to take risks. They may not see their doctors much and cancers are relatively rare at this age.”
To improve outcomes, Rachel works with a team of senior nurses, counsellor, youth development officer and exercise physiologist to provide psychosocial and general medical support. They work alongside the oncologists and others on the treating teams.
Given her unique experience – palliative care physician, rural general practice, sexual health medicine and retrieval medicine – sharing the experiences of young people has been a very worthwhile journey for her.
Involvement in decision-making
“Young people want to be involved in decision making in any chronic illness. Their priorities are honesty and confidentiality. We recognise that young people are at least partially independent but possibly quite connected to their family.”
“How much control over decision making do they want? Perhaps they want confidential time during consultation. Sometimes we have to advocate for them – what they do and don’t want to share? We try and help each family communicate. The onus is on us to be clear around confidentiality.”
“Trust is incredibly important. Young people need to understand why we are putting them through this. Their brains are wired to question everything. One of my jobs is to be an extra sounding board on treatments, symptoms and side effects.”
“I’m a generalist, so I look at a young person from scratch – what’s affecting their quality of life, so the impact of cancer can be minimalised. The other thing that’s important later is to help them transition out of cancer treatment back into life.”
Dr Rachel HughesBalancing hope with reality
She has set herself clear boundaries around caring.
“We are not friends, we are trusted health care professionals, that’s an important distinction. I want patients to come to me when they are worried about something, and I will speak with them honestly and allow them to balance hope and reality. And then we go from there.”
“Enough of my patients go through advanced stage disease with a lot of symptomatology. If the young person is facing a life-threatening illness they still want honesty and assurance that even if things are not going well, we will make as much effort to look after them as if they were getting cured.”
Confidence in their doctor being able to control symptoms is important. She said fatigue, both emotional and physical, is the most common complaint.
The Youth Cancer Service grew out of a very strong nursing model and now has a network of supporters. Over the last 10 years recognition of clinical gaps in this age group has grown. Survival is improving.
Rachel thinks getting young people onto clinical trials will improve things further. Early referral from GPs for a rare disease means the best information has to get out to GPs.
“When someone is referred to our service we get to know them and screen them for psychosocial distress and as soon as we can, we discuss fertility preservation – we bring it up as some young people may not have contemplated having children and we know having cancer doesn’t alter their desire to have children.”
“For example in WA we have a state sarcoma service – working towards a highly specialised, centralised, multidisciplinary management team of surgeons, radiation oncologists and making sure the diagnostic process is ideal. Referral pathways are something we will continue to work on. The other is making sure young people get the best access to supportive care alongside the best cancer care.”