FormalPara Key Points

  • The Alan Walker Cancer Care Centre in Darwin has significantly improved cancer care in the Northern Territory, but barriers still exist for patients who live in remote locations.

  • Patients are often required to travel for cancer care without a clear plan and timeline for their treatment. Events like tracheostomies cannot be planned in advance and may require big lifestyle changes.

  • As a health practitioner, I need to be aware of two gaps we need to close—one about treatment outcomes, and one about mutual understanding. Health practitioners need to lose their focus on “paternalistic good” and replace it with respect and a yearning to understand.

For almost 30 years, I have provided radiation therapy treatment for cancer patients from the Northern Territory. I’ve learned a lot about the problems faced by Indigenous cancer patients who live long distances from a major center and who need to deal with life-threatening diseases without good support. I’ve also learned a lot about my attitude to life and to cancer care. In this case study, I share an example from my practice and explore some of the lessons I’ve learned over the years.

My Patient

My patient is a 65-year-old Elder from a community located a one-hour flight from Darwin.

He first presented with a painful mouth, having experienced two months of increasing pain while swallowing. He was seen by doctors in Darwin and diagnosed with a typical squamous cancer in the tonsil region. His cancer did not show signs of being caused by HPV and thus was diagnosed as related to a long history of smoking. Based on the tumor position, he was referred for major surgery, which would be performed in Adelaide (a four-hour flight from Darwin).

As part of the surgery, the patient needed a tracheostomy to ensure his airway was good during recovery. The surgeons were able to avoid removing his voice box, so the patient knew the tracheostomy was likely to be temporary. When he left Adelaide, he had both the tracheostomy and a feeding tube in his stomach (PEG). He knew that he may need the PEG for several months, but it was not expected to be permanent. There was no sign the tumor had extended into his lymph nodes, and extensive x-rays before surgery confirmed the tumor had not spread to other organs, in particular to his lungs.

The medical team concluded the patient had potentially curable but extensive cancer, and radiotherapy was recommended. As his lymph nodes were not involved and the tumor was removed cleanly, there was no benefit in adding chemotherapy.

Radiotherapy involved a CT scan at the Alan Walker Cancer Care Centre in Darwin to plan his treatment. While he was in Darwin for the scan, he was also checked by the dentist and saw experts about managing his PEG. At this stage, the tracheostomy was removed, as his post-op swelling had settled. Radiotherapy was planned, with six weeks of daily treatment (Monday to Friday) in Darwin. The patient was accommodated in Darwin for treatment.

The patient completed his radiotherapy without problems. He required pain relief for mucositis during the last two weeks of treatment, but this was not required when he was seen for a follow-up four weeks after treatment was completed. He had minimal skin irritation and managed his PEG well. His eating recovery was quick. He was booked for a follow-up PET/CT scan three months after treatment, plus an ENT community review one month after treatment.

The patient’s PET/CT scan was slightly delayed due to transport issues in getting to Darwin from the community. When he was reviewed four months after radiotherapy, doctors found a new area of uptake on the skin over the upper jaw, which was consistent with further disease a few centimeters from his previous tumor. This uptake needed a biopsy, and the patient was aware that he may need further surgery. The biopsy led to a lot of anxiety for the patient, with testing that required additional trips to Darwin. After around three weeks of delay, new disease was discounted, giving the patient a positive outcome.

Learning from This Case

The case described is not unusual in the Northern Territory, where neck cancer related to smoking is common among the Indigenous population. While still curable, the cancer carries a worse prognosis in active smokers than for similar cancers caused by viral infections. Smoking prevention to decrease cancer incidence and to help cure diagnosed cancers remains a problem.

Having the Alan Walker Cancer Care Centre in Darwin has significantly improved patients’ access to first-class cancer care, but there are still barriers for patients who live in remote locations. Visiting Darwin for diagnosis and planning, treatment, and follow-up is always a challenge. Because of the distances and transport logistics, we need to coordinate as many investigations as possible during each visit to Darwin, and this requires substantial case coordination.

Complex care for patients who live in the Northern Territory may still involve a transfer to a major center such as Adelaide, as it did for the patient described above. The patient often needs to leave their home without having a clear plan and timeline for their treatment. Events like tracheostomies and PEGs, which may not be planned in advance, require big lifestyle changes and ongoing community care. Big problems like a stroke or heart attack can occur as a result of complex surgery, and this can make it impossible for the patient to return home. The patient may die away from their Country. These issues need to be considered before a patient travels for care. Our patients often have ongoing challenges, including susceptibility to infection with chemotherapy treatment, severe pain, long-term PEG dependence, and permanent tracheostomy. Fortunately, for the patient described above, treatment was reasonably straightforward, no chemotherapy was needed, and he was able to return home.

As the senior members in their communities, Elders are used to providing support to their communities. When an Elder becomes a patient, they may have a greater understanding of the health system than other community members, but they find themselves facing their own health challenges and possibly dependence on carers. As medical professionals, we need to be aware these patients may not seek the help they need.

What This Means for My Work

As a young doctor, I thought that my job was to organize treatment. Gradually, I learned about the many other factors involved. Some of these are obvious—such as patients facing time away from work and family, and treatment side effects. But cancer also has a culturally specific meaning, which may need to be explored. Patients may be thinking about why they got cancer, what effect it will have on their future, and how it will impact their time on earth in the context of family and community. I don’t have any answers for these concerns, but I’ve learned a little more about the deep connection many Indigenous patients have with 65,000 years of culture and the powerful effect this has on how they live life. As a health practitioner, I need to be aware of two gaps we need to close—one about treatment outcomes, and one about mutual understanding. Giam Kar’s reflections in this volume highlight some of the work being done at the Alan Walker Cancer Care Centre as we all try to understand these gaps.

I’ve noticed that medical practitioners who spend time working at the Alan Walker Cancer Care Centre learn deep lessons around mutual respect and caring. They tend to lose their focus on “paternalistic good” and replace it with respect and a yearning to understand.

Some of the significant approaches implemented in the Northern Territory, which may contribute to successful cancer care for Aboriginal people living in remote communities, include:

  • Building the Alan Walker Cancer Care Centre and giving people access to high-quality treatment closer to home.

  • Introducing telemedicine to help people understand their planned treatment before they leave home and to check on their post-treatment recovery.

  • Upskilling community care networks.

  • Sharing good stories—both back to communities and with staff (who are rightfully proud of their work).

  • Considering innovative technologies—particularly whether we can offer radiotherapy in smaller population centers, with the treatment designed in the main center.

Perhaps the most important suggestion for health practitioners is to keep an open mind and try their best to help.