In 2018, Mark Johnson generously shared his deeply personal experience of HPV-related throat cancer with us at the Throat Cancer Foundation. It was one of the most powerful and harrowing accounts we had ever published — a stark portrait of the life-or-death decisions he and his young family were forced to face at the time.
Seven years on, we reached out to Mark to see how he was doing. What he shared is, without doubt, one of the most humbling stories we have ever had the honour to hear. It’s not an easy read, but it is unflinchingly honest — spanning from his first symptoms in 2014 to the present day.
The First Diagnosis: 2014
In February 2014, Mark began experiencing a persistent earache. Initially prescribed antibiotics, he was eventually referred to ENT when the pain returned — and just before his appointment, he noticed a lump under his jawline. A needle biopsy and MRI were arranged. The lump turned out to be benign, but the MRI revealed something more serious: a possible tumour at the base of his tongue.
After two biopsies, Mark was diagnosed with HPV-positive tongue cancer. The news was a shock. He was nearly 40, a non-smoker, rarely drank, and had never even heard of HPV.
Before treatment began, he had to undergo dental clearance, losing all but six of his front teeth. Then came six weeks of brutal chemoradiotherapy. Halfway through, due to severe weight loss, Mark required a nasal gastric tube and became dependent on a feeding pump for 12 hours a day. On Boxing Day, dangerously unwell, he was hospitalised with neutropenic sepsis.
A Glimmer of Recovery: 2015
By early 2015, the feeding tube was removed. A biopsy revealed only scar tissue. Mark underwent surgery to remove lymph nodes as a precaution and began the slow process of relearning how to swallow. Speech and language therapy helped; psychological support became essential. He was fitted with false teeth and began adapting to a new kind of normal.
A Devastating Return: 2016
But that progress was short-lived. In early 2016, the earache returned — and so did the cancer.
This time, the prognosis was stark: opt for palliative care, or undergo a total glossectomy and laryngectomy, alongside major reconstructive surgery. The result would be permanent: no natural voice, no solid food, and an entirely new way of living.
Mark chose life — for his wife and three children, then aged 5, 10 and 15.
On 26 April 2016, just days after turning 42, he underwent 14 hours of surgery. He awoke breathing through a hole in his neck, unable to speak, and facing years of painful rehabilitation.
Rebuilding a Life
By 2018, Mark was able to swallow soft foods again. The feeding tube was gone. But the challenges endured: PTSD, anxiety, and depression. Daily fatigue. Chronic infections. Lasting damage from the surgery on his leg, as they took fat and muscle from it to reconstruct the floor of his mouth. He could no longer make phone calls, struggled to eat in public, and faced regular stares and whispers. Most days, he was exhausted by early afternoon.
Yet he held firmly to the reason behind his choice: more time with his family.
“Had I not had the operation,” he said, “I doubt very much I would be typing this now.”
A Relentless Fight: 2020–2025
In 2020, Mark was diagnosed with a third cancer, treated again with radiotherapy. In late 2024, he received his fourth diagnosis. Immunotherapy was trialled but proved ineffective. He is now undergoing chemotherapy to manage symptoms. His condition is, very sadly, terminal.
And still, his courage shines through.
“Life has been good between 2018 and now,” he says. “So, I can’t complain too much.”
Why Mark’s Story Matters
Mark’s story is one of unbreakable resolve and quiet, immense strength. It is also a critical reminder of the importance of early diagnosis, ongoing support, and prevention — particularly through HPV vaccination.
We are deeply grateful to Mark for sharing his truth, again, so that others might be spared similar suffering — and so that those already living with the consequences of this disease know they are not alone.
Thank you.
If you have been affected by Mark’s moving story or impacted by HPV and want to help in some way with helping the Throat Cancer Foundation to raise awareness of HPV and throat cancer, donate now, here.
