A tale of two diagnoses: A patient’s perspective on the importance of earlier diagnosis

This is the story of two cancer diagnoses, four years apart. They involved the same GP practice, the same group of hospitals and the same person – me. 

New Year’s Eve 2019 

It was news I wasn’t expecting. I was diagnosed with anal cancer, a rare cancer I had never heard of.   

I had been to see my GP a few weeks before about what I thought was an annoying haemorrhoid. I was surprised when he said he wanted to examine me, as I was expecting to be sent away clutching a prescription for ointment. When he looked, he realised that there was a high likelihood that it wasn’t piles.   

The next few weeks were filled with tests, scans, biopsies and examinations up to the 31 December 2019, when I received my diagnosis.   

I had stage 2 cancer, with no spread. I was recruited to the PLATO ACT4 clinical trial and started chemo-radiotherapy at low dosages in mid-March as we were all plunged into the bizarre world of lockdown.  

By July 2020 I was cancer free. 

November 2023 

Over three years later, I started experiencing a series of vague, non-specific illnesses. I was tired, losing weight and wheezing when I lay down.   

From November 2023 until the summer of 2024, I saw my GP eight times. I had been through tests for a urinary tract infection, chest infection, dodgy thyroid and diabetes. But it was none of these. My symptoms worsened, and by the time of my final appointment I had lost 14 kilos and needed a stick to keep me upright. 

Summer 2024 

This June I had a routine follow up appointment for anal cancer with my oncologist. We talked about my symptoms and the extent of my weight-loss triggered her to order tests and eventually a biopsy. Four weeks later I was back in her office being told that I had small cell lung cancer. 

My second cancer diagnosis felt like the ground had opened beneath my feet. My next reaction was deep grief and then anger. That left me with a question – what to do with how I felt. 

What have I learnt? 

My treatment has given me time to think about my two diagnoses and the lessons I’d like to share. 

Lesson 1: The importance of psychological support 

A lesson I have carried with me from living with anal cancer is the importance of not putting up with the psychological and emotional distress that cancer can cause. I finished anal cancer treatment determined to get my life back, but my life didn’t want to cooperate. 

I had vivid and frightening flashbacks to treatment and hospitalisation. I alternated between being indifferent to my own health and the people who provided me with care, to anger at the smallest word I took offense to.  

It was only a chance visit to Maggie’s at Barts after a routine cancer check that changed things. A staff member asked if I would like a cup of tea and I ended up sobbing uncontrollably. They organised counselling and referred me to the excellent psychology support service at the Homerton Hospital, who also helped me access sexual wellbeing and psychological support. 

I’m now nearing the end of my current treatment and I am being proactive about the psychological support I may need – both around my treatment and my longer term prognosis. 

Lesson 2: The importance of talking to clinicians 

The difference between my first and second cancer diagnosis can really be summed up with one word – curiosity. 

My GP was curious the first time I was diagnosed, but he had a starting point – a lump that didn’t look like a haemorrhoid. Rather than settle for the obvious diagnosis he decided to look further.   

The second time I presented my GP with a set of non-specific symptoms – each one with a myriad of possible causes that my GP tried to rule out. It wasn’t until I saw my oncologist, who sees me as someone living with cancer, that my symptoms were investigated as part of my ongoing care. 

Following a cancer review meeting with my GP, she invited me to come back for a longer conversation about my experience. She wanted to understand where in the process the practice could have done better, and what they could learn from that. I was very happy to help in a small way, but also grateful that she saw this as a tool to improve services for those with a potential cancer diagnosis. 

Over the past few years, I have also worked with my local Cancer Alliance to improve services for people living with cancer. One area I have been focussed on is early diagnosis and this is where everyone has a crucial role to play.  

Despite astonishing advances in diagnosis and treatment, what has not changed is the importance of not ignoring symptoms – strange weight loss, feeling tired, a persistent cough, that spot of blood when you use the loo. 

Our relationship with clinicians is so important, so we need to initiate that first conversation with our GP to trigger their curiosity and enable earlier diagnosis.