Head & Neck Cancer Support Network Trust Community News
December: Giving Tuesday
A Heartfelt Thank You for Your Support on Giving Tuesday
We are immensely grateful for your generosity during our Giving Tuesday fundraiser. Thanks to your kindness, we raised funds to continue supporting those affected by head and neck cancer. Every dollar raised helps us provide vital resources, peer support, and advocacy for our community.
However, we must also be honest with you. While we are thankful for the funds raised, the total amount does not fully cover the costs of our work. Like many charities and community organisations, we are facing significant funding challenges. The economic climate has created fierce competition for limited resources, and it is increasingly difficult to secure the financial support we need.
Our organisation relies on donations to provide crucial services, including:
Welcome support packs for new members, which include patient planners and a small felt tui bird to remind them they’re not alone.
Brochures and outreach materials to raise awareness about head and neck cancer in our communities.
The ongoing costs of maintaining our online community, website, and support network.
If you haven’t had a chance to donate yet, we encourage you to consider contributing this week. Your support, no matter the size, directly impacts our ability to sustain the work that means so much to patients, survivors, and their families.
Together, we can continue to foster a welcoming, supportive, and resourceful environment for those navigating the challenges of head and neck cancer.
Thank you for being part of our journey. Your generosity and care make all the difference.
Donate Now
Visit our website to make a tax-deductible donation and help us keep our programs running. https://www.headandneck.org.nz/donations or for those of you who prefer to donate by card https://buy.stripe.com/14kaGG70DeyFeJ29AA
⛯ New Explorers Joining Our Community!
A warm welcome to new members, Sheryll Kay, David Rhodes, Anna Mischefski, Andrea Vos, Tania Drower, Bridge OBrien and Caroline Stockman who recently joined our community Facebook page, "The Explorers".
Your presence enriches our network, bringing diverse experiences and perspectives. We encourage everyone to engage, share stories, and offer support as we navigate this journey together.
We have a welcome pack for you click the link here to order. Link to Welcome Pack
🗞️ News: International Head and Neck Cancer
We know that you and your whānau and friends, who share your journey, want to have access to the latest reliable information on head and neck cancer treatment advances. We have created a catalogue of new developments for you to view. We will keep adding to these resources as time goes on. Please feel free to share; there is much advancement in treatments and hope.https://www.headandneck.org.nz/advancements
Did you know? Drinking alcohol causes cancer
Alcohol is responsible for hundreds of cancer cases in Aotearoa New Zealand every year. Most of us know that smoking, asbestos, and sun damage can cause cancer, but it’s less well-known that drinking alcohol can too. Alcohol causes cancer by damaging our DNA.
Drinking alcohol doesn’t mean that you’ll definitely get cancer, but the risk is higher the more alcohol we drink. https://www.headandneck.org.nz/advancements/ka-hua-mai-te-mate-pukupuku-i-te-inu-waipiro-alcohol-causes-cancer
DART 2.0 clinical trial seeks to advance precision medicine for HPV-driven head and neck cancers
Mayo Clinic researchers are collaborating on a phase 2, multisite, interventional trial to evaluate a blood-based biomarker using a testing device for HPV-driven head and neck cancers.
HPV-related head and neck cancer is one of the fastest-growing cancers in the U.S. This research has the potential to improve clinical outcomes by enabling physicians to select individualized treatment options that aim to decrease cancer recurrence and minimize the side effects and morbidity of treatment. https://www.headandneck.org.nz/advancements/dart-20-clinical-trial-seeks-to-advance-precision-medicine-for-hpv-driven-head-and-neck-cancers
New ‘fingerprinting’ method offers hope for targeted head and neck cancer treatments
Head and neck cancers, among the ten most common globally, make up 3-5% of all cancer diagnoses, with squamous cell carcinomas being the most prevalent. These cancers often develop in areas like the oral cavity, pharynx, and larynx, and their incidence has surged over the past three decades, with 18,000-20,000 new cases reported annually in Germany alone. The rise in middle pharyngeal carcinomas is particularly concerning, largely driven by increasing rates of human papillomavirus (HPV) infections. In light of these trends, an international research team developed an innovative technique with the potential to transform the diagnosis and treatment of these cancers. https://www.headandneck.org.nz/advancements/new-fingerprinting-method-offers-hope-for-targeted-head-and-neck-cancer-treatments
🌟Patient Story: Navigating the Journey: A Patient's Story of Courage and Uncertainty
A lead clinician is a senior medical professional—typically a surgeon, oncologist, or another specialist—who takes overall responsibility for managing your cancer treatment.
At just 42 years old, Sione* finds himself standing at a crossroads. A proud Tongan father of five, Sione is known for his warm smile and dedication to his family. But today, he faces a challenge that shakes his sense of control: he’s preparing for life-saving head and neck cancer surgery. His journey to this moment has been anything but straightforward.
Sione first noticed something wasn’t right more than a year ago. Persistent soreness in his throat, difficulty swallowing, and a nagging lump on his neck prompted him to visit multiple general practitioners. Despite his concerns, his symptoms were dismissed as minor infections or stress-related issues. It wasn’t until he advocated for himself relentlessly that he was finally referred to a specialist. By then, the diagnosis was serious.
Adding to his anxiety is the complexity of navigating the health system. Referred from his regional hospital to a larger city facility, Sione feels like a small fish in a vast ocean. He’s unsure who is responsible for his care or who he can turn to with questions. The unfamiliar environment, combined with a whirlwind of appointments and consultations, has left him overwhelmed.
“I just want to know who is looking after me and what will happen to me,” Sione shares. “My family wants to understand too, so they can help me through this.”
Sione’s close-knit family has been his pillar of strength. His wife, parents, siblings, and extended relatives have rallied around him, ensuring he is never alone. Yet, the weight of being the family’s primary provider looms large in his thoughts. He worries about the financial strain his treatment and recovery might place on them.
Sione’s surgeon has explained the plan for his operation, but he’s deeply concerned about the aftermath. Will he be able to speak clearly? Eat normally? Return to work? The uncertainty feels like a second diagnosis.
This story is not unique. Many patients referred to city hospitals for specialised care feel adrift, unsure of how to navigate the complexities of a fragmented health system. Knowing who the lead clinician is—a single point of contact who coordinates care and answers questions—can provide much-needed clarity and reassurance.
If you or someone you know is feeling lost in the system, remember these steps:
Ask for the name of your lead clinician. This person is your point of contact. If you're unsure who they are, ask any health professional you meet during your care.
Write down your questions. Bring them to each appointment so you can focus on what matters most.
Lean on your support network. Whether it’s family, friends, or a support group like ours, there’s strength in connection.
Sione’s journey continues, and so does his courage. His determination to face the future, supported by his family and medical team, is a reminder of the resilience within us all.
If you’ve faced similar challenges or have tips to share, we’d love to hear from you. Together, we can strengthen our community by sharing knowledge, support, and compassion.
*Sione’s name and some details have been changed to respect his privacy.
Our Trust has been working closely with Te Aho o Te Kahu to improve the way head and neck cancer patients are cared for within the health system. One of the key outcomes we’ve agreed on is the introduction of a lead clinician for each patient. This is a significant step forward in ensuring that every patient receives consistent, coordinated care throughout their cancer journey.
https://www.headandneck.org.nz/advancements/lead-clinician
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🫶🏽 Community Resources
If you are new to head and neck cancer, or back in treatment, we have a support pack for you. You can find all the details here. https://www.headandneck.org.nz/patient-planner
If you would like some brochures to introduce the Head and Neck Cancer Support Network Trust to your family and friends, please feel free to contact us headandnecknetwork@gmail.com
🫶🏽 Contact us
We welcome contact from our head and neck cancer community, including whānau and friends. Please feel welcome at any of these contact points. https://www.headandneck.org.nz/contact-us
🌟 From the Chair
Kia ora koutou,
As we bring 2024 to a close, I want to take a moment to reflect on what has been an extraordinary year for our Head and Neck Cancer community.
First and foremost, a heartfelt thank you to everyone who supported us on Giving Tuesday. Your generosity ensures that we can continue to grow our impact and support those affected by head and neck cancer. Every donation matters and we are deeply grateful for your belief in our mission.
This year has been marked by incredible achievements:
We launched a new website, making it easier than ever to find information, resources, and connections.
Our Facebook group has grown into a comforting and supportive hub, offering a safe space for sharing experiences and building community.
We completed three significant projects with Te Aho o Te Kahu, reinforcing our voice in shaping policy and services.
Perhaps most notably, we celebrated the funding of Keytruda for head and neck cancer, a breakthrough in treatment access for our community.
None of this would have been possible without the dedication and passion of so many. To our volunteers, trustees, donors, online support givers, and those in our community who continue to share our brochures and wear our cause ribbons—you are the heart and soul of our network. Your contributions, big and small, create ripples of change that make a real difference.
As we approach the holiday season, I want to wish each of you peace, joy, and a well-deserved rest. Thank you for being part of our journey this year, and I look forward to reconnecting in February 2025 as we embark on another year of progress and connection together.
Ngā mihi nui,
Diana Ayling
Head and Neck Cancer Support Network Trust
Donate Now: https://www.headandneck.org.nz/donations
Thank you for your continued support.
Head and Neck Cancer Support Network Trust
