Head & Neck Cancer Patient & Family

Head & Neck Cancer Patient & Family Encouraging & helpful information for Head & Neck Cancer patients, families, friends & clinicians. Links to evidence-based clinical websites.

Collaboration 🙌🏽.“Thank you Sabina for the incredible opportunity to visit your head and neck late effects clinic at UCL...
14/02/2026

Collaboration 🙌🏽.

“Thank you Sabina for the incredible opportunity to visit your head and neck late effects clinic at UCLH today with Hattie our Mid and South Essex NHS Foundation Trust lead H&N CNS, learnt so much to take back away and implement 👍🏽.

“Sabina has developed the UK’s first H&N specific late effects clinic, grateful to have her as a friend and mentor ❤️.”

Source: LinkedIn

Head and neck   is the seventh most common cancer worldwide. In 2024, approximately 58 450 individuals were diagnosed wi...
12/02/2026

Head and neck is the seventh most common cancer worldwide. In 2024, approximately 58 450 individuals were diagnosed with oral cavity and pharynx cancer and 12 650 were diagnosed larynx cancer in the US.

Although many malignancies originate in the head and neck region, the term head and neck cancer typically applies to tumors arising in the lining or mucosa of the upper aerodigestive tract. Approximately 90% of head and neck cancers are caused by squamous cell .

This Review summarizes the epidemiology, pathophysiology, clinical presentation, diagnosis, and treatment of head and neck squamous cell carcinomas ( ) of the upper aerodigestive tract.

Article: https://jamanetwork.com/journals/jama/fullarticle/2842834

From Head and Neck Cancer Australia.In October 2025, Vince underwent a total laryngectomy shortly after being diagnosed ...
12/02/2026

From Head and Neck Cancer Australia.
In October 2025, Vince underwent a total laryngectomy shortly after being diagnosed with laryngeal cancer. Reflecting on his experience, Vince shares:
“My journey is far from over. I use the analogy of a student waking up in the morning after their last day in school.”

His powerful story is a reminder of the resilience and strength among the Head and Neck Cancer community.

Read Vince’s journey in his own words on our website: https://www.headandneckcancer.org.au/news/vince-holt/

🇬🇧 A patient story from the UK. Today, Mark is at home, surrounded by the people he fought so hard to have more time wit...
11/02/2026

🇬🇧 A patient story from the UK.
Today, Mark is at home, surrounded by the people he fought so hard to have more time with—his wife and children. He is receiving palliative care, and whilst this chapter of his journey is heartbreaking, the legacy of his resilience and openness continues to shine.

When Mark Johnson first shared his story with the Throat Cancer Foundation in 2018, he spoke of unimaginable challenges faced with extraordinary courage. From his initial diagnosis in 2014 through life-altering surgery and multiple recurrences, Mark's voice became a beacon of hope and honesty for countless others navigating the devastating impact of HPV-related throat cancer.

A Decade of Fighting

Mark's journey began simply enough in February 2014 with an earache that wouldn't shift. What followed was a decade that tested every facet of his strength—physical, emotional, and mental. At just 40 years old, a non-smoker who rarely drank, he was blindsided by an HPV-positive cancer diagnosis. The virus he'd never heard of had caused a tumour at the base of his tongue.

The treatment that followed was brutal: dental clearance, six weeks of chemoradiotherapy, a nasal gastric feeding tube, and Boxing Day spent in hospital fighting neutropenic sepsis. By 2015, there was hope—scans showed only scar tissue, and Mark began the painstaking process of recovery, learning to swallow again and adapting to life with false teeth.

But in 2016, the cancer returned. This time, the choice was stark: palliative care or undergo a total glossectomy and laryngectomy—losing his tongue and voice box entirely. For his wife and three children, then aged 5, 10, and 15, Mark chose the surgery. On 26 April 2016, just after his 42nd birthday, he endured 14 hours on the operating table.

The Gift of Time

Mark awoke breathing through a stoma in his neck, unable to speak naturally, and facing a lifetime of adaptation. He communicated through text-to-speech apps, navigated daily exhaustion, managed chronic pain in his reconstructed leg, and battled PTSD, anxiety, and depression. Simple tasks—making phone calls, eating in public, walking against the wind—became monumental challenges.

Yet despite everything, Mark spoke of gratitude. Between 2018 and the present day, he treasured the extra years he'd been given with his family. "Life has been good," he said recently. "So I can't complain too much."

In 2020, Mark faced his third cancer diagnosis, treated once more with radiotherapy. In late 2024, a fourth diagnosis came. Immunotherapy was tried but didn't work. Chemotherapy followed to manage symptoms. Throughout it all, Mark maintained the same quiet, immense strength that had carried him through every battle before.

At Home, Where He Belongs

Now, Mark is home. His family—the reason behind every difficult choice, every gruelling treatment, every moment of perseverance—are with him. Whilst this is not the ending anyone would have wished for, it is a testament to Mark's spirit that he is where he wanted to be: surrounded by love.

Mark's decision to share his story so openly has been a profound gift to the throat cancer community. His honesty about the physical, emotional, and psychological toll of this disease has helped countless patients and families feel less alone. His advocacy for HPV awareness and vaccination has undoubtedly contributed to saving lives.

Why Mark's Story Will Always Matter

Mark's journey is a powerful reminder of what HPV can do—and why prevention, early detection, and comprehensive support matter so urgently. Had the HPV vaccine been available to Mark when he was younger, his life might have taken an entirely different path. His story underscores the critical importance of vaccination programmes and public awareness.

For those living with throat cancer, Mark's courage offers reassurance that they are not alone in their struggles. For those who love someone with this disease, his story provides insight into the daily realities they face. And for all of us, Mark's determination to choose life—again and again—is a humbling example of the strength of the human spirit.

Our Gratitude

We at the Throat Cancer Foundation are profoundly grateful to Mark and his family for allowing us to share his journey. The honesty, bravery, and grace with which he has faced each diagnosis and each setback have touched us deeply.

Mark chose to speak out so that others might be spared similar suffering. He chose to share the hardest parts of his experience so that people would understand the true impact of HPV-related throat cancer. He chose to keep fighting so he could spend more time with the people he loved most.

His story will continue to matter, continue to educate, and continue to inspire.

Thank you, Mark. For everything.

🇬🇧 Understanding the Challenges We Face TogetherWhen Cancer Research UK classifies throat cancer as "hard to treat," the...
10/02/2026

🇬🇧 Understanding the Challenges We Face Together

When Cancer Research UK classifies throat cancer as "hard to treat," they're highlighting a reality that affects thousands of patients and families every year. This classification isn't just about medical complexity—it reflects systemic challenges in detection, treatment, and research that demand our urgent attention.

The Silent Early Stages

One of the most significant obstacles in treating throat cancer is the difficulty of early diagnosis. The initial symptoms—a persistent hoarse voice, lingering sore throat, or difficulty swallowing—are easily dismissed as minor ailments. Many of us have experienced these symptoms with a common cold or seasonal allergies, making it all too easy to delay seeking medical attention.

By the time many patients receive a confirmed diagnosis, they are already at stage 3 or 4 of the disease. At these advanced stages, the cancer has often spread beyond its original location, making treatment significantly more complex and reducing the chances of successful outcomes. This late-stage diagnosis is one of the primary reasons throat cancers carries such a challenging prognosis.

The Heavy Cost of Treatment

Even when treatment successfully eradicates the cancer, patients often face profound, permanent changes to their quality of life. The location of throat cancers—affecting structures essential for speaking, eating, and breathing—means that treatment frequently results in life-altering consequences.

Some patients lose their voice boxes entirely, fundamentally changing how they communicate with loved ones and navigate the world. Others lose the ability to eat solid foods, requiring permanent feeding tubes for nutrition. Dental complications are common, with some patients needing to have teeth and portions of their jaw removed as part of treatment.

The lasting effects extend beyond these major changes. Damage to saliva glands can cause chronic dry mouth and difficulty speaking. Dental problems may persist for years. Hearing can be affected. Many patients struggle with severe, ongoing difficulties eating or drinking, impacting not just nutrition but also the social and emotional aspects of sharing meals with family and friends.

These aren't just medical complications—they're challenges that affect every aspect of daily life, from professional careers to personal relationships to simple pleasures many of us take for granted.

The Research Gap

Perhaps the most frustrating aspect of throat cancer's "hard to treat" status is that it doesn't have to be this way. Throat cancer remains critically underfunded and underrepresented in cancer research. This lack of investment translates directly into fewer treatment options and slower progress.

Currently, there are no national screening programmes for throat cancer, despite the potential for earlier detection to dramatically improve outcomes. Treatment innovation has been limited, with many approaches remaining largely unchanged for years. Clinical trials specifically focused on throat and laryngeal cancers are too few, meaning patients have limited access to experimental treatments that could offer hope.

Public awareness, particularly around HPV-related throat cancers in men, remains dangerously low. Many people don't know that HPV—commonly associated with cervical cancer—is now a leading cause of throat cancer, or that vaccination could prevent many cases.

Moving Forward Together

Understanding why throat cancer is classified as "hard to treat" is the first step towards changing that reality. The challenges are significant: late diagnosis due to subtle early symptoms, devastating treatment side effects that alter fundamental aspects of daily life, and a critical shortage of dedicated research and funding.

But these challenges also point the way forward. We need:

Increased public awareness about early symptoms and risk factors
Expanded screening programmes to catch cancers earlier
Greater investment in research specifically targeting throat cancers
More clinical trials offering patients access to innovative treatments
Better support systems for patients dealing with treatment's life-changing effects

Every patient deserves a fighting chance. Every family deserves hope. By understanding these challenges and working together to address them, we can change the trajectory of throat cancer treatment and save lives.

To support work that helps people recognise symptoms sooner, get to diagnosis faster, and feel supported through treatment and beyond, click here and donate to our awareness campaign:

https://www.justgiving.com/campaign/throatcancerfoundation

“Dad who nearly lost tongue to cancer urges men's virus awareness”It is so important that children get the HPV vaccine. ...
08/02/2026

“Dad who nearly lost tongue to cancer urges men's virus awareness”

It is so important that children get the HPV vaccine. In Australia it is provided free via a school vaccination program. It is important that boys and girls get the vaccination.

Head and Neck Cancer Australia

A father-of-two reveals how a tumour in his tongue was caused by human papillomavirus (HPV).

We’ve spent the last 10 years listening, learning and raising the voices of people affected by Head and Neck Cancer. Tog...
07/02/2026

We’ve spent the last 10 years listening, learning and raising the voices of people affected by Head and Neck Cancer. Together, we’ve made meaningful progress.

Read more:https://www.headandneckcancer.org.au/media/hntbcvtf/10-years-of-impact_final.pdf

It was so good to catch up with Nadia Rosin, CEO of Head and Neck Cancer Australia at the Official Launch & Symposium of...
05/02/2026

It was so good to catch up with Nadia Rosin, CEO of Head and Neck Cancer Australia at the Official Launch & Symposium of the Australian Research Centre for Cancer Survivorship in Sydney.

Thanks to Prof Bogda Koczwara & team for including a panel of & at the launch. The centre is a partnership with Cancer Council NSW.

Our patient panel topic was, “Research Priorities: Ideas from Cancer Survivors and Carers.”

Panel patient members were Dr Ben Bravery, Mrs Nyan Thit Tieu, Prof Phoebe Phillips AM & Peter Spolc. It was my joy to be the facilitator of the panel.

Here’s a link to a handout we prepared. It has the bio & key messages for each panel member: https://unsw-my.sharepoint.com/:b:/g/personal/z3380694_ad_unsw_edu_au/IQAZozc0w0tKRbvZdHZSET24AXVGXlAsMfBeeyFFePLsIVY?e=hEH04j

Sisters Cancer Support Group, Founder and Chair, Mrs Thiet Tieu: https://www.nzf.org.au/partner/sisters-cancer-support/

Thank you to Dr Carolyn Mazariego UNSW & Prof Graham Mann, Daffodil Centre Cancer Council NSW for offering your thoughts, after the panel, about research ideas raised that should be further investigated.

Thank you to Haryana Dhillon and Kirsten Pilatti for your comments.

Head and Neck Cancer Australia

Thanks to Prof Bogda Koczwara & team for including a panel of   &   at the launch today of the UNSW Australian Research ...
05/02/2026

Thanks to Prof Bogda Koczwara & team for including a panel of & at the launch today of the UNSW Australian Research Centre for Cancer Survivorship. The centre is a partnership with Cancer Council NSW.

Our patient panel topic was, “Research Priorities: Ideas from Cancer Survivors and Carers.”

Panel patient members were Dr Ben Bravery, Mrs Nyan Thit Tieu, Prof Phoebe Phillips AM & Peter Spolc. It was my joy to be the facilitator of the panel.

Here’s a link to a handout we prepared. It has the bio & key messages for each panel member: https://unsw-my.sharepoint.com/:b:/g/personal/z3380694_ad_unsw_edu_au/IQAZozc0w0tKRbvZdHZSET24AXVGXlAsMfBeeyFFePLsIVY?e=hEH04j

Sisters Cancer Support Group, Founder and Chair, Mrs Thiet Tieu: https://www.nzf.org.au/partner/sisters-cancer-support/

Thank you to Dr Carolyn Mazariego UNSW & Prof Graham Mann, Daffodil Centre Cancer Council NSW for offering your thoughts, after the panel, about research ideas raised that should be further investigated.

Thank you to Haryana Dhillon and Kirsten Pilatti for your comments.

   The new Australian Reaearch Centre for Cancer Survivorship at UNSW is being launched tomorrow.Cancer survivor, carer ...
04/02/2026



The new Australian Reaearch Centre for Cancer Survivorship at UNSW is being launched tomorrow.

Cancer survivor, carer and researcher Professor Phoebe Phillips and Professor Bogda Koczwara, Director of the Australian Research Centre for Cancer Survivorship discuss in this interview how to support people not just during the early stages of care, but for the long run.

Australia is a world leader in cancer survival, with more than 1.6 million people now living with and beyond cancer. But survival alone doesn't tell the whole story. Even when treatment is successful, many people are left managing long-term physical, psychological and social impacts of their illness...

🙋🏻‍♀️ Lived Experience as Evidence ✅  “If we are serious about improving cancer care, then people with lived experience ...
04/02/2026

🙋🏻‍♀️ Lived Experience as Evidence ✅

“If we are serious about improving cancer care, then people with lived experience need defined roles, real voice, and accountability mechanisms across research, policy, and practice, from design through evaluation.” Carolyn Taylor, Cancer Lived Experience Advocate 🇺🇸

  ☢️ 🌍 Let’s use sound design & the skills of theatre to improve the radiation therapy experience. Here are some ideas f...
03/02/2026

☢️ 🌍
Let’s use sound design & the skills of theatre to improve the radiation therapy experience.

Here are some ideas for architects designing cancer treatment rooms.

Let’s bring the sound of bird call 🦢 rain 🌧 and wind 💨 into the radiation therapy bunker and waiting areas. And visuals of the world of nature 🌴 🌱 🪴

Many cancer centres are including images of nature and, where possible, access to outdoor areas with plants growing. The Royal Adelaide Hospital Radiation Therapy Department has this. It is good for patients, family and stay 🪴.

SAHMRI & Australian Bragg Centre for Proton Therapy and Research Webinar “How can we improve the radiation experience for patients & families?”Webinar 1 : ht...

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Living with head & neck cancers

We are survivors of head and neck cancer working to share information to support patients, family, friends and professional carers.