Rare cancer patient support is my job — people are failed in key area | UK | News

Most cancer patients receive little or no mental health support and 84% of patients with a less common cancer, neuroendocrine cancer, told us they weren’t asked how they were feeling emotionally when they received their diagnosis. A cancer diagnosis is life-changing. But for people with less common cancers like neuroendocrine cancer (NC), that emotional impact can be even more profound — and more invisible.

With little awareness amongst both healthcare professionals and the public, and the reality of being diagnosed, often at a late stage, with a complex form of cancer, patients can be left facing a psychological burden that goes unrecognised and unsupported. As a charity supporting people affected by neuroendocrine cancer, we hear this every day.

Patients tell us they feel isolated, frightened, and misunderstood — not only by society, but sometimes by their own healthcare teams.

Neuroendocrine Cancer UK’s MIND The Gap survey (2018) asked patients and carers about their experiences of emotional support at diagnosis and beyond. The results were deeply concerning:

84% of respondents said they were not asked how they felt emotionally when they were diagnosed
62% said they were rarely or never asked about their emotional wellbeing during appointments
42% felt their emotional wellbeing was not acknowledged at all by their healthcare team

These statistics show a systemic silence around the mental health of cancer patients — particularly those with less common forms of the disease like neuroendocrine cancer and its rarer subtypes.

One patient told us: “I’m so tired of living with this, always feeling unwell, dreading injections and tests. I was beginning to feel I should just opt out.”

This is not an isolated story. It’s a reflection of the emotional toll that goes unspoken, unsupported, and — in some cases — untreated.

One type of neuroendocrine cancer is often described as “treatable but not curable.” Patients may live with the disease for many years, facing frequent scans, ongoing treatment, and lifelong uncertainty.

That uncertainty — about prognosis, progression, or symptoms — was described in one global study as the most difficult aspect of living with chronic cancer, affecting nearly 75% of patients.