Head & Neck Cancer Support Network Trust Community News September 2025

Written By Head and Neck Cancer Support Network
 

  • October is Health Literacy Month Dedicated to promoting easy access to health information.

October is Health Literacy Month:
Why It Matters for Head and Neck Cancer

Every October, Health Literacy Month reminds us that understanding health information is a cornerstone of good care. For people living with head and neck cancer, health literacy is not just about reading leaflets or hearing instructions from a doctor. It’s about making sense of complex medical terms, navigating a maze of appointments and treatments, and having the confidence to ask questions and make decisions that are right for you.

What is health literacy?

Health literacy is the ability to find, understand, and use health information in a way that supports your wellbeing. It is about being able to:

  • Understand your diagnosis and treatment options

  • Ask questions and speak up when you don’t understand

  • Navigate hospitals, clinics, and community support systems

  • Manage medications, side effects, and follow-up care

  • Make decisions with your healthcare team

When health literacy is strong, people feel more in control of their care. When it is weak, people can feel overwhelmed, isolated, and unsure of their choices.

Why is health literacy important in head and neck cancer?

Head and neck cancer is a complex condition. Treatment often involves surgery, radiation, chemotherapy, or a combination of these. It can affect basic daily activities like eating, speaking, and breathing. The side effects can be long-lasting, and the recovery journey can be challenging.

Because of this, people affected by head and neck cancer often face a flood of information at a time when they are anxious, tired, and not at their best to process it. Clear, simple, and compassionate communication from health professionals makes a huge difference. So too does the ability for patients and caregivers to understand what’s happening and to feel comfortable asking, “Can you explain that again in plain language?”

How can we build health literacy together?

At the Head and Neck Cancer Support Network Trust, we believe health literacy is a shared responsibility. Here are some practical ways we can all play a part:

  1. Ask questions. There are no “silly” questions. If you don’t understand, keep asking until things are clear. Writing down questions before appointments can help.

  2. Use plain language. Medical terms can be confusing. We encourage health professionals to use everyday words and patients to ask, “What does that mean for me?”

  3. Share resources. We provide guides, checklists, and patient stories that make complex topics easier to understand. Check out our website www.headandneck.org.nz

  4. Support each other. Peer-to-peer support helps people interpret information and feel less alone. Sometimes hearing it from someone who’s been there makes all the difference. Please feel free to ask questions in our Facebook group The Explorers. https://www.facebook.com/groups/headnecknz

  5. Check back. A good tip is the “teach-back method”: repeat what you’ve heard in your own words to confirm you’ve got it right.

Our commitment

This Health Literacy Month, we recommit to making our resources, newsletters, and community meetings as clear and accessible as possible. We know that improving health literacy empowers people to take charge of their care, reduces stress, and leads to better outcomes.

Seeking Volunteers for The Explorers Facebook group

The Head and Neck Cancer Support Network Trust is seeking a volunteer to join our welcoming admin team (Gaynor, Sean, and Diana).

 

What’s involved?

  • Helping us keep things organised behind the scenes

  • Supporting our online community and groups

  • Assisting with communications, newsletters, and events

  • Bringing fresh ideas and energy to our projects

Why volunteer with us?

  • Make a positive impact on the lives of patients and whānau

  • Gain experience in social media, communications, and community-building

  • Flexible role – work from anywhere, when it suits you

  • Be part of a welcoming, supportive team

This is a great role if you or someone in your whānau are a student, early-career professional, or someone wanting to build experience while giving back. Please email us if you are interested. We are keen to hear from you. headandnecknetwork@gmail.com

Patient Story: Mike Greco from Head and Neck Cancer Survivors

This post is from Mike Greco in the Facebook group Head and Neck Cancer Survivors on 16 August 2025.

What Have We Brought Upon Ourselves?

I wrote a version of this post months ago, and it sparked both praise and pushback. I’m sharing it again because recent posts in this group echo some of the same concerns. As survivors, we must enter our years of “post survivorship” with eyes wide open. Treatment ending doesn’t mean we can coast into old age carefree.

If you’d rather not think about what lies ahead, please stop reading HERE.

Side effects vary—tied to age, diagnosis, staging, treatment types, and genetics—so not everyone’s journey will look the same.

Please don’t message me asking to take this down. What’s written here is the truth. We need to face it and prepare together. Ignoring reality solves nothing. But, once again, If you would rather not worry about it now, stop HERE.

I recently spoke with an oncologist friend I met through this group. He’s 57 now, specialises in head and neck cancer, and has practised for over 25 years at a major Southeast cancer centre. We were discussing head and neck cancer case management when he said survival rates are soaring, thanks to advances like HBO, robotic surgery, targeted radiation, new drugs, and genetic therapies. But he said, “There’s a catch: long-term survivors face new challenges as they age. “The human body,” he explained, “Is built to last about 80-85 years under normal conditions. Chemo and radiation, while increasingly effective, tend to “accelerate” the ageing process in survivors. Most survivors now live long enough to face issues typically seen much later—bone deterioration, tooth decay, hearing loss, thyroid failure, nerve damage, reflux, vision and voice problems, swallowing difficulties, vocal cord failure, carotid artery stenosis, even secondary cancers.” He added that a large number of HPV-related cases are striking younger patients, meaning these “advanced aging” problems hit them even earlier. In short, we’re surviving longer, but our bodies are wearing out faster. To reach 75 and beyond, we must be proactive.

Much needs to change in post-treatment care for head and neck cancer survivors. We should push our medical and insurance communities to prioritise:

1. Full Disclosure: Patients need to know potential side effects before treatment begins.

2. Follow-Up Plans: Oncologists should create side-effect surveillance strategies and refer patients to specialists—like dentists experienced with H&N survivors—pre-treatment.

3. Comprehensive Checklists: Beyond CTs, PETs, and scoping, we need assigned professionals for eye exams, carotid sonograms, dental checkups, hearing tests, speech/ swallowing evaluations, and physical therapy for shoulder, neck, or trismus issues.

4. Insurance Advocacy: We need advocates to prove these ailments stem from our disease and treatment, ensuring coverage for PET scans, dental care, HBO, and more.

My Post treatment side-effect timeline:

• Years 1-5: Moderate swallowing issues, severe dry mouth, tinnitus, thyroid failure. Diagnosed with glaucoma.

• Years 6-10: Shoulder and neck problems, dental decay. Cataract surgery (right eye, radiated side).

• Year 12: Tinnitus worsened, 15% hearing loss from baseline. Treatment associated with Reflux led to esophageal scarring.

• Year 13: Neck lymphedema, eustachian tube failure. Constant ear/throat pain; permanent ear tubes needed to drain fluid so I can hear out of right ear.

• Year 14: Right vocal cord failure. Permanent voice damage.

• Year 15: Major dental issues—broken teeth, two extractions, a bridge ($8,500, uninsured). Chronic ear pain began.

• Years 16-17: More dental work—bridges, gum repair ($6,500). Jawbone deterioration (radiated side). Perforated eardrum from radiation, requiring surgery.

• Years 18-20: 40% reduction in voice quality. Increased swallowing difficulty requiring several dilations a year. Additional significant dental work (none of it insured).

As I sit here now staring at this time line, organised on a piece of paper, I see now exactly what my friend meant.

This message isn’t meant to depress new survivors. Instead, read it carefully and plan your survivorship with vigilance. Detect these issues early—or prevent them altogether.

Of course, in my case, I thank God I’m still alive 21 years post-treatment and healthy enough to grumble about my problems. Some of you recently said you wouldn’t have chosen treatment knowing the cost to your quality of life. I get it. But I’d rather face the future with confidence, strength, and knowledge. You’ve already beaten cancer in your body—don’t let it defeat your mind.

Yes, life’s been tougher since my diagnosis. But 21 years with my wife, kids, and the joy of experiencing the birth of 9 grandkids? That’s has been worth every penny of the price.

What are your thoughts ? Please feel free to share your thoughts, email us headandnecknetwork@gmail.com

Calling Parents with Tongue Cancer: Share Your Story to Help Improve Support in Aotearoa

Kia ora, my name is Lauren Garner. I am a Master of Health Psychology student at Te Herenga Waka - Victoria University of Wellington. For my thesis, I am researching how parents with dependent children experience psychosocial support while facing a diagnosis and treatment for tongue cancer. This project is supervised by Dr Ally Gibson, an experienced cancer support researcher, with consultation from the Regional Head and Neck

Cancer Service at Wellington Hospital and Dr Swee Tan (ONZM MBBS FRACS PhD) at the Regional Head and Neck and Skull Base Surgery Service at Hutt Hospital.

Being diagnosed with tongue cancer can be life-changing, especially for parents who are also caring for young children. My research is about exploring how parents find and receive support, whether from healthcare professionals, support services, friends, whānau or the wider community. The aim is to better understand what support is out there, what is helpful, and where gaps may exist. Findings will be shared with support and health services so that future practice can be improved for families going through similar experiences.

Who can take part?

I am looking for people who:

  • Have been diagnosed with and treated for head and neck cancer (specifically tongue cancer) in the last 10 years, and

  • Are the parent or guardian of at least one dependent child under 18.

If you choose to take part, I will meet with you for a relaxed conversation, either in person (if you live in the Wellington region), or online using Zoom. Interviews will take between 45 and 60 minutes and can take place wherever you feel comfortable. You are welcome to have a family member of support person with you.

During the interview, you will be invited to share your experiences of psychological, social and family support during your cancer journey. You decide what you want to share, and you may choose not to answer any questions or to stop the interview at any time. To acknowledge your time and contribution, you will receive a $30 gift voucher.

If you would like to be involved, please click this link to fill out the consent form and I will be in contact with you about a suitable time for a kõrero:

https://qualtricsxml37mcmw33.qualtrics.com/jfe/form/SV_cVoGFBl1U9iL1e6

If you have questions, please feel free to contact me at lauren.garner@vuw.ac.nz or my supervisor Dr Ally Gibson at ally.gibson@vuw.ac.nz

I look forward to hearing from you!

Ngā mihi nui,

Lauren Garner

Campaigns and Consultations

The Health Voice in Aotearoa New Zealand is increasingly active in seeking better resources and services for those in need of health and disability support. Here are the current campaigns where you might like to participate.

https://www.dentalforall.nz/

Good oral health is an important foundation for wellbeing and should be valued as part of our public health system. Currently, oral health is treated differently to the rest of our health, and 40% of adults can’t afford the care that they need. Free and universal oral healthcare would mean everyone in Aotearoa could afford the regular check-ups and care they need, unlocking pathways for better oral health for everyone. https://www.dentalforall.nz/

Patient Voice Aotearoa

The Buller Declaration was officially launched in Westport on Saturday, 28 September (hence the reference to Buller) after 2000 people took part in a silent march to the clock tower over the state of healthcare in Buller.

To start the Declaration, the Mayor of Buller signed, as did representatives of the New Zealand Nurses Organisation, the Association of Salaried Medical Specialists, the Rural Health Network, and the New Zealand Royal College of General Practitioners. After they had signed, we then invited the public to do likewise. You can sign the petition or be there to present it at Parliament.

Sign the petition here

Rare Disorders New Zealand

In July 2024, the Ministry of Health released New Zealand's first Rare Disorders Strategy, outlining the Government's intentions to improve health outcomes for people living with a rare disorder.

While this was a huge milestone for the rare disorders community, there has been no action since to begin implementing the intentions in the Strategy. Without action, the Strategy is not worth the paper it is written on.

Rare Disorders NZ has launched a petition calling for Te Whatu Ora - Health NZ to urgently begin planning and implementing the Rare Disorders Strategy.

Sign the petition here.

Head and Neck Cancer and Rare Disorders

Is Head and Neck Cancer a Rare Disorder?

By definition, a rare disorder affects fewer than 1 in 2,000 people. Head and neck cancers as a group are not classed as “rare” worldwide – together they make up around 5% of all cancers.

But here in New Zealand, only about 550–600 people are diagnosed with head and neck cancer each year. That’s around 1 in 8,000 people annually – making it far less common than cancers like breast, prostate, or bowel.

Many subtypes of head and neck cancer are considered rare, such as cancers of the salivary glands, sinuses, and nasopharynx.

What matters most for people living with head and neck cancer is that we often face the same challenges as people with rare diseases:

  • Specialists are few and not available everywhere

  • Care is complex and can be fragmented

  • Information and support are harder to find

  • Patients and carers often feel invisible in the wider cancer community

So, while head and neck cancer may not always be “rare” by definition, the experience of living with it often feels rare. And that’s why we stand alongside others with rare disorders to call for better recognition, resources, and support.
The annual Rare Disorders survey is open. 2025 Rare Disorders Survey

🌟 From the Chair

Kia ora friends,

Late last year I was admitted to the hospital with a severe facial infection. I received excellent clinical care, including IV antibiotics and follow-up through the ORL service. I was also provided with a discharge summary, which outlined the admission and treatment.

Even with this documentation, I have been reminded how important clear and timely communication is for patients. When you are living with a complex condition such as head and neck cancer, it can be difficult to piece together all the strands of your care — hospital admissions, outpatient clinics, imaging results, and multidisciplinary team (MDT) meetings.

The Code of Health and Disability Services Consumers’ Rights ensures that we, as patients, have the right to be fully informed, to receive services of an appropriate standard, and to make informed choices about our care. In practice, this means more than just receiving a letter. It means:

  • getting information in a way we can understand,

  • being told promptly about the results of tests and discussions, and

  • being involved in decisions as an equal partner.

I have seen the benefits of the MDT process, where specialists from different fields collaborate to find the best options. But as patients, we need those discussions translated back to us in clear, direct communication. Only then can we make confident choices about the path ahead.

Our Network exists to walk beside you in this journey — helping you to understand your rights, ask the right questions, and feel supported. Good communication is at the heart of good care, and together we can continue to advocate for a system that listens and responds to patients’ voices.

With aroha,
Diana Ayling
Chair, Head and Neck Cancer Support Network Trust




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Head & Neck Cancer Support Network Trust Community News August 2025