By Anna C. Greene, PhD, NETRF Chief Scientific Officer
At the Neuroendocrine Tumor Research Foundation (NETRF), we often hear a familiar story: symptoms that don’t make sense, appointments that don’t lead to answers, and months or years of uncertainty before someone finally names neuroendocrine cancer.
Patient surveys have helped bring that experience to light. They’ve been critical for raising awareness, validating what patients go through, and showing how disruptive delays can be.
A newly published analysis from England by Busani Ndlela and colleagues offers a complementary perspective. Instead of relying on patient recall, it uses information pulled from primary care records in the National Cancer Diagnosis Audit (NCDA), linked to cancer registry diagnosis dates. In simple terms, it asks: across an entire health system, what does the path to diagnosis look like for people who were ultimately diagnosed with neuroendocrine cancer?
What this study found
The study included 919 adults diagnosed in 2018 across 11 primary sites. Lung neuroendocrine cancers were the most common in this cohort, followed by small intestine and pancreas.
The researchers focused on two time periods:
- Time from a first relevant primary care visit to the first referral
- Time from that first relevant visit to the actual diagnosis
In this audit, timing started at the first visit later judged to be related to the eventual cancer diagnosis (not necessarily when symptoms first began).
The typical timelines were shorter than many people expect based on survey reports:
- Median time from first relevant primary care visit to referral: 7 days
- Median time to diagnosis: 54 days
But the experience was not uniform:
- About 13% waited more than 60 days to be referred
- About 31% waited more than 90 days to receive a diagnosis
The study also shows how complex the process can be:
- 45% were referred through an urgent suspected cancer pathway
- 18% were diagnosed after an emergency presentation
- Among those whose diagnosis involved primary care, 25% had three or more visits before referral
- Over half had at least one test ordered in primary care, most often blood tests and imaging, with imaging used in about 30% overall and more often in women
Even when the timeline is measured in weeks, many people still go through repeat visits, multiple tests, and different routes into specialist care.
Why this looks different from patient survey findings
Many well-known papers on the diagnostic journey are based on patient surveys and often report delays of four years or more. That doesn’t mean one source is “right” and the other is “wrong.” They’re capturing different parts of the picture.
- Surveys often measure from the first time symptoms began. With neuroendocrine cancer, symptoms can be vague, intermittent, or slowly changing, so the “starting line” may be far earlier than the first medical visit that gets recorded as relevant.
- This audit-based study measures from the first documented relevant presentation in the medical record, using recorded dates.
- Surveys can also lean toward people who had the hardest journeys, because those individuals may be more motivated to participate. A national audit includes a broader mix, including people diagnosed more quickly.
Together, these perspectives help us understand both the lived burden of delayed diagnosis and the system-level patterns that can guide improvement.
Neuroendocrine cancer still takes longer than other cancers in the same audit
In the same NCDA dataset, neuroendocrine cancer took longer to diagnose than cancers overall:
- Median time to first referral: 7 days for neuroendocrine cancer vs 2 days across all cancers
- Median time to diagnosis: 54 days for neuroendocrine cancer vs 36 days across all cancers
So even with shorter medians than older survey reports, neuroendocrine cancer still stands out as harder to diagnose than many other cancers.
Who may face longer waits
The audit suggests delays are not evenly shared. Women and younger adults were more likely to experience longer waits, and timelines varied widely depending on where the tumor started. Differences between audit findings and survey reports may also reflect who is most likely to take part in surveys. These patterns don’t explain why delays happen, but they show where closer attention is needed.
Closing thought: Shortening the wait after referral
If you’re living with neuroendocrine cancer, or supporting someone who is, it can be jarring to see “median 54 days” next to stories of years-long uncertainty. Both realities can exist at the same time.
This study offers cautious reassurance that, across one national health system, the typical recorded time from a relevant first visit to diagnosis may be shorter than older survey estimates suggested. At the same time, it reinforces what patients have long known: neuroendocrine cancer often takes longer to diagnose than many other cancers.
Because the median time to diagnosis (54 days) is much longer than the median time to referral (7 days), much of the wait occurs after referral. If a large share of the wait happens after the first referral, then improving what comes next, faster testing, faster specialist review, and better coordination, could help more people reach answers sooner. And while systems improve, patients deserve clarity. If symptoms persist or worsen, it’s appropriate to keep advocating, ask what the next step is, and make sure follow-up has a timeline.
NETRF will keep pushing for research and care improvements that reduce uncertainty, shorten the path to answers, and make the diagnostic process more reliable for every person.