Exclusive: Doctors ignore terminal cancer
Daniel van Roo will never know if his now-incurable cancer could have been treated were it not for his 18-month battle to convince doctors something was seriously wrong.
He says that over at least 14 different consultations with general practitioners at a clinic in Sydney’s Surry Hills between March 2015 and September 2016 – during which he complained of crippling exhaustion, unexplained abdominal pains, night sweats, weight loss and groin pain near swollen lymph nodes – his symptoms were treated as “STI-related in origin”.
A gay man, van Roo was tested more than 50 times during those GP visits for sexually transmitted infections, none of which returned a confirmed diagnosis of any STI. His tests, however, showed other concerning trends – falling haemoglobin levels and red blood cell counts, dramatically increasing lymphocyte numbers and platelets 30 points below the acceptable range.
Something troubling was happening in his body.
The Saturday Paper has reviewed van Roo’s medical file, the results of these tests and his Medicare rebate logs, as well as correspondence with the clinic, the New South Wales Health Care Complaints Commission (HCCC) and the Australian Human Rights Commission (AHRC).
The 44-year-old has now referred his complaint to the AHRC, which is investigating whether the clinic is responsible for “indirect sexual orientation discrimination” under its legislation.
For legal reasons, The Saturday Paper has chosen to name neither the clinic nor the doctors involved, while the investigation is pending.
“In my day to day, moment to moment, I try not to think about it because it is going to kill me,” says van Roo. “The opportunity and the moment to get it early on has passed and the circumstances around that moment passing are not great.
“If I hadn’t taken action and if I hadn’t seen a doctor then, you know, then where I am is just where I am. But because I did do those things, I am probably going to be upset about it when I am laying in the hospital bed at the end.”
Van Roo was diagnosed with stage 4B non-Hodgkin follicular lymphoma in September 2016.
“My spleen was so enlarged that it was pushing on my diaphragm and compressing my lungs,” he says.
“And the lymph nodes throughout my inguinal [groin] area were so enlarged that they were pressing on nerves, which was what was making me collapse all the time.
“I was at the end.”
Typically, non-Hodgkin follicular lymphoma is slow moving and can be cured, if it is discovered in stages 1 or 2. But the disease can move stealthily through the body. About 30 per cent of cases are found in time for life-saving treatment.
“I didn’t know a lot about cancer, but I knew enough to know that there isn’t a stage 5,” says van Roo. “If you’re on stage 4B, that’s the end of the scale. It’s chemotherapy only for the purpose of trying to prolong your life.”
He describes collapsing on the way to the supermarket, just 200 metres from his apartment.
As his symptoms continued, and pain became a daily occurrence, he was never referred for a CT scan or an ultrasound, which may have been able to identify his cancer.
On September 22, 2016, a year and a half after he first presented with mysterious symptoms, he asked for a scan during a consultation with one of his two longstanding GPs at the Surry Hills clinic.
An analysis of Medicare billing records for this session shows van Roo was not bulk-billed for this appointment. Neither did his doctor request bulk-billing on a referral for imaging at a private clinic.
It took van Roo six days to get an appointment for that scan.
“So, that was another week that I was walking around in incredible pain,” he says.
When the scan was done, the imaging centre took it upon themselves to waive the $400 fee.
Last year, van Roo asked H3 Health Consultants, run by Christopher Hastie, a former principal researcher to the chief medical officer of Australia and former senior policy officer for the Medicare Benefits Schedule, to analyse his medical history with the Surry Hills clinic from 2010 onwards.
The report says that in 2016, under the care of one GP, van Roo had four out of five consultations bulk-billed.
“The patient reports that [his doctor] did not deem this request for a CT as clinically warranted/necessary. This appears likely, as the 22 September consultation was the only consultation where the patient was required to pay,” the H3 report says.
Van Roo’s request for the scan came after a number of notable test results. On August 18, a general haematology test and multiple biochemical analyses were taken with results returned two days later.
Australian Clinical Labs noted “lymphocytosis with occasional reactive lymphocytes” was present. Van Roo’s lymphocyte count had gone from a score of 1.4 in March 2015, to 2.2 in February 2016, to 6.4 in August 2016.
“The acceptable range for lymphocytes is small, between 1 to 4,” Hastie notes in his report for H3.
“Any changes should be considered as significant. The patient has had nine tests for lymphocytes, which provide a clear pattern warranting investigation since March 2015.”
Meanwhile, van Roo’s haemoglobin level had fallen from 147 to 130, precisely at the lower limit of the normal range. In the chemical test, he returned another worrying result – his alkaline phosphatase (ALP) levels had jumped from 68 in February 2016 to 107 in July and 131 in August. This final result was 11 points higher than the acceptable upper limit.
“Mild elevation of ALP may occur in response to a wide variety of medications, infections and inflammatory conditions and early bone disease,” the lab report said.
It recommended a repeated full blood examination in two to three weeks to monitor his levels.
These tests were not repeated.
Van Roo booked his next appointment at the clinic in Surry Hills for September 22, and during that consultation he requested a scan. No further bloodwork or general biochemistry tests were conducted.
The clinic involved has not responded to multiple requests for comment and clarification from The Saturday Paper. Reception staff confirmed a detailed list of questions was sent on to the relevant doctors at the clinic, but none have made contact.
Daniel van Roo is still looking for answers.
In late 2019, he lodged a complaint with the NSW HCCC, an independent authority that says it “acts to protect public health and safety by resolving, investigating and prosecuting complaints about health care”.
Over three rounds of assessments and investigation, which ultimately resulted in three dismissals of the complaint, the HCCC backed the treating doctors on account of van Roo’s “previous history”.
“It is clear from the review that your diagnosis of lymphoma was not considered until 28 September 2016,” HCCC resolution and customer engagement director Jane Probert wrote to van Roo last month.
“Notwithstanding this, your previous history and symptoms were suggestive of STIs across multiple presentations, leading to a reasonable conclusion that your symptoms may have been STI related in origin.
“… It was not unreasonable for the practitioners to consider that they were related under the circumstances.”
Van Roo says he believes the HCCC found in favour of his doctors because the commission was reflecting the trope that gay men in particular have risky sex lives.
“They [the commission] were abundantly aware that I hadn’t had an STI [test] return positive,” he says.
“So, I can only assume that when they say ‘your history’ they’re referring to me being a homosexual, because I didn’t have a history of STIs.
“I don’t think a heterosexual person would be given that many STI tests.”
The HCCC also used van Roo’s participation in the global-first trial of pre-exposure prophylaxis (PrEP) for HIV prevention, known as the EPIC trial, as justification for the number of STI tests conducted on him.
“Clinical records indicate that a large proportion of the STI testing was predominantly part of the EPIC trial, in which you were a consenting participant,” Probert says in her letter to van Roo.
Except that was not the case.
Records supplied to van Roo from the clinic state he began as a participant in the trial only on July 22, 2016 – a little more than two months before his diagnosis of lymphoma.
Under the trial, testing for only one infection – HIV – was mandated as a baseline check in the first month.
As the data from his file indicates, summarised by H3’s consultant Christopher Hastie, there were 50 STI tests “from the point of symptoms being expressed by the patient in 2015”.
Just one of those was required under the EPIC trial.
“It remains a concern of H3 Health that … even when [his GPs] were presented with [a] series of abnormal pathology results that STI testing continued,” Hastie wrote in a review of the clinic’s response earlier this month.
But the HCCC formed the view that the first time van Roo “presented with symptoms that required further investigation for something other than an STI appears to be on 28 July 2016”.
Van Roo’s medical file shows he was weighed in February of that year and had also attended the July 22 appointment just six days before the July 28 consultation in which his GP noted he had had “central epigastric pain for almost two to three months”.
“[He] has also lost almost 10kg this year,” his doctor noted in his file. In a later visit, the same doctor noted “daily abdominal pain since March”.
Van Roo says he finds the explanation by both the HCCC and his GPs bewildering.
“It doesn’t make any sense because they have failed to address that I was weighed in February,” he says.
“It’s a very strange paragraph because they have quite strongly made a statement and then they have contradicted themselves in the next sentence.
“If what the HCCC says is true, that none of my symptoms could have been anything other than an STI, then why did they give me a full range of tests?”
The Saturday Paper put a detailed list of 16 questions to the HCCC, along with signed permission from van Roo to discuss his case. The agency declined to comment, citing strict legislative requirements that would make it an offence to do so.
It also cannot release responses from the clinic gathered during its investigation.
A spokesman said the HCCC was instructed by van Roo’s GP clinic that “its response and related information be strictly used for its assessment purposes only”.
The HCCC told van Roo his treatment by the clinic was reasonable and there “was not a strong indication of lymphoma”.
Given van Roo’s particular cancer is considered a “low-grade tumour”, no expert can ever tell him whether it may have been curable if discovered earlier.
Nevertheless, Professors Peter Clyne and Susan Pendlebury – a GP and oncologist, respectively – both told van Roo’s lawyers that in their opinion, “there has been a delay in diagnosis”.
Legally, however, van Roo does not have a case.
Instead, the AHRC is investigating.
In a June letter to the AHRC, the director of the Surry Hills clinic that treated van Roo said “it would have been apparent to Mr van Roo what tests and investigations were being ordered and why and the results relayed to him throughout the course of 2015 and 2016”.
In his review, Christopher Hastie from H3 said the clinic’s response lays the “onus and burden on the patient to understand the correct diagnostic pathways for appropriate diagnosis of a medical concern”.
In the almost four years since his diagnosis, van Roo has had six rounds of chemotherapy and 12 rounds of immunotherapy to slow his cancer’s spread. He has enjoyed a short-lived remission, which lasted only five months.
Recent scans, taken at the end of June, showed a slight growth of the tumours. He suffers two attacks of paralysing abdominal pain during our interview.
Treatment may need to resume before the year is out.
“I’m not much of a crier, but I’m really at my end with it,” van Roo says. While 70 per cent of non-Hodgkin follicular lymphoma cases are found at a late stage, he points out, that still means some 30 per cent are discovered early enough for treatment.
The not knowing, the shimmering promise of what could’ve been if the disease had been found earlier, has done as much damage to his mind as the cancer has to his body.
“They’re just going to assume I was part of that 70 per cent,” he says.
“What if I wasn’t?”
This article was first published in the print edition of The Saturday Paper on Jul 11, 2020 as "Exclusive: Doctors ignore terminal cancer".
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