'Doctors have no idea of the fear patients have': why Sashie felt alone on her journey

She first had chest pains while working as a resident in intensive care, and put them down to stress. But when Sashie Howpage had difficulty breathing, her GP sent her for a chest x-ray.

"The radiographer, recognising I was a doctor, said, 'Do you want to come and have a look at your x-ray?'" she said. "I saw a huge mass in my chest. I'd seen it before; I knew what I was facing. No one told me that I had cancer - I figured it out in that dark room, alone."

Dr Howpage was diagnosed with Hodgkin's lymphoma. She started treatment on her 24th birthday, undergoing chemotherapy and radiotherapy - a process she described as "fighting evil with evil".

She has been in remission for three years, but severe side effects almost drove her to give up treatment. She felt she had lost control of her life. Blogs written by other sufferers terrified her.

"Doctors have no idea of the fear patients have," she said.

Dr Howpage said she made the mistake of thinking "it was all my own journey", not realising her family had also struggled to cope with her cancer diagnosis. "The support from a network of people who are in a similar place would have been wonderful," she said. "It's not just the patient who's grieving."

Knowing first-hand the challenges faced by cancer patients such as Dr Howpage, as well as their caregivers, Sydney doctors Nikhil Pooviah and Raghav Murali-Ganesh, from the Chris O'Brien Lifehouse cancer hospital, developed an app designed to improve cancer care.

CancerAid is now the most popular cancer app on the Apple store in Australia, the US and the UK, used by 30,000 people in 24 countries.

Licensed to cancer institutions and provided to patients free of charge, CancerAid organises medical records and streamlines information on appointments, treatments and specialists. It gives patients and caregivers accurate information about their illness and treatment plan, as well as access to online journals and a supportive community of patients and carers.

Dr Howpage said the app would have been invaluable when she was battling cancer. "It helps give back some control, knowing you can track what's happening with your treatment," she said. "Better informed patients ... are willing to keep going with treatment, even when it's too hard or they don't see the benefits."

Having all the patient's information available on the app would also make it easier for clinicians, she said. Hospital data systems were "not in the modern age yet. This app is leading the way with how we store medical records on the phone."

Almost 135,000 new cases of cancer are expected to be diagnosed in Australia this year; an estimated 21.7 million new cases of cancer will be diagnosed worldwide in 2030.

"When a patient gets a diagnosis of cancer it hits them like a freight train," Dr Murali-Ganesh said. CancerAid aims to "put the power within the hands of the patient. [We're trying] to change the way care is delivered, to improve the journey for many, many thousands of patients."

Dr Murali-Ganesh and Dr Pooviah, both aged 30, are now working full time on CancerAid, which was one of six start-ups selected for this year's elevate61 accelerator program in the US.

Dr Pooviah said the two world-first studies, on cancer nutrition and rehabilitation, were being conducted within the app, which also collects data in a secure, anonymised way to fuel research, further innovation and improvements in clinical care.

"We're looking at trends to help improve clinical decisions," he said. "A lot of the components we have designed could apply to other chronic diseases."

Chief executive of the Chris O'Brien Lifehouse, Eileen Hannagan, said the research opportunities offered by CancerAid were exciting.

"Hospital settings need to start adopting new technologies in this digital age," she said. "With AI, VR and other digital tools like CancerAid improving patients' lives, it's a very exciting time to be in health care."

The story 'Doctors have no idea of the fear patients have': why Sashie felt alone on her journey first appeared on The Sydney Morning Herald.

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