Our Facebook Group Head & Neck Cancer Support

Head and Neck Network's Posts (192)

Tui Talks

Our first Tui Talk will take place on 1 May, 2018 at 8pm. You can attend a Tui Talk by clicking this link https://zoom.us/j/725517148 and following the instructions. 

To talk to and hear us online you will need. A camera attached to your computer, speakers, and a microphone. Don't worry if you don't have all those things. A simple set of phone earbuds will do the trick. You will be able to hear and speak, but we won't be able to see you.

It takes a little practice, so we will have back up support on our Facebook page on that evening where you can ask questions and get and answer through the messenger function. 

We look forward to this practice run, and meeting you online.To find out more about Zoom as an online meeting tool go to https://www.zoom.us. It is a free tool. 





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New support forum


We have updated our forum. Because 99% of our discussion is in our closed Facebook group, the forum has never really taken off apart from with a very small number of people, mainly committee members. Some of us are experienced users of online cancer forums like the Oral Cancer Foundation and Mayo Clinic Connect but we have reluctantly* conceded that Facebook is easier for a start-up group. Discussions are shifting from the old forums to the closed Facebook groups across the world I believe. 

However, we want to respect and acknowledge the needs of patients and carers who are not on Facebook. We see the forum as a place for lengthier discussions and easier access to older dialogue. In Facebook, subjects can get lost down the page: on a forum, topics show up in a handier list. 

Why did we delete the old forum? It was because the limited discussion we did have was a bit testy and we want to change tack and make it a "Support Forum" where people can vent, discuss, record their story, ask questions but do so kindly in accordance with our values. These are ERIC: engaged, respectful, informed, caring.

We know that there is often a lot of unresolved anger amongst cancer patients like ourselves when function has been lost, faces disfugured and lives changed forever. It's healthy to vent, to have an outlet for anger as well as support but we want the overall tone to be friendly and caring. There can be a lot of fellowship amongst people who have been through the same thing. The shared suffering inspires a special cameraderie and kindness in a well run forum. 

At the moment, moderation is turned on. We hope this doesn't slow things down too much. 

Topics we have started on the new forum so far are: dental issues, palliative care, radiotherapy. We will soon add the topic of caregivers and whanau. Anyone can add a topic. 

*In 2016, we hoped our shiny new website would attract more comment and discussion. Our vigorous Facebook group has preempted that. The website attracts a lot of viewers but not many commentators. Please join us!



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Along with `quit alcohol and smoking and lose weight’ the line `exercise more’ is pretty much standard medical advice. However, the lead story notes that there may be more to the`exercise more’ than simply to make everyone feel guilty.

Second story re-emphasises the need for good dental hygiene.

# That moment when you’re all grown up, and you finally realize that the little piggy didn’t go to the market to go shopping
# Maybe there is no placebo effect and sugar pills just cure everything
# The friendliest dogs would make the creepiest humans


A Post Cancer Push

(U.S.)  “I remember when I got the second cancer diagnosis, I was ready to leave the hospital and go home,” Yadira Peña said. “I think it was more difficult because I knew what was coming—the chemotherapy, the surgeries.”

After completing her treatment for ovarian cancer, Peña’s care team at The University of Texas MD Anderson Cancer Center approached her about participating in a program they had been working on with the Kelsey Research Foundation, called Active Living After Cancer.

“We got interested in physical activity as a program to help cancer survivors recover better after cancer and improve their quality of life,” said Basen-Engquist, professor of behavioral science and director of the Center for Energy Balance in Cancer Prevention and Survivorship at MD Anderson.

“Around that time, there was some work being done by a researcher in Canada showing that exercise was not only safe for people with cancer, but also had benefits. We were interested in bringing some of that type of research to MD Anderson, but we took a little bit different approach.”

As behavioral scientists, it was the goal of Basen-Engquist and Carmack, a professor in the department of palliative, rehabilitation and integrative medicine at MD Anderson, to make a long-lasting impact on the women enrolled in the program, rather than promote short-term weight loss or fad dieting.

“We are talking about incorporating physical activity into daily life, as well as going to the gym,” Basen-Engquist said.

She explained that many cancer survivors do have issues after their cancer treatment—they are deconditioned, their physical functioning has declined and they experience early aging.

She said the main goal of the program is to get people feeling better, to boost their energy and to regain some of the strength they lost over the course of their cancer treatments.

Full story

Be your own advocate

The importance of dental care goes beyond cavities — it’s also about preventing cancer. The week of April 8 is National Oral, Head and Neck Cancer Awareness Week, and your dentist or dental hygienist may be your first line of defense against oral cancer.

More than 50,000 Americans are expected to be diagnosed with oral or oropharyngeal cancer (cancer of the back of the throat, including the base of the tongue and the tonsils) in 2018, and 350 will be diagnosed in West Virginia alone.

Routine dental exams can detect cancer or pre-cancers during the early stages. If you notice a persistent sore or pain, swelling or changes in your mouth, or red or white patches on the gums, tongue, tonsils or lining of the mouth, visit a doctor or dentist so they can examine your mouth more closely.

Some people diagnosed with oral cancer have no risk factors, so it’s important for everyone to keep those dental appointments.

If you use tobacco, drink alcohol in excess, or have the human papillomavirus (HPV), you have an increased risk for oral cancer. Oral cancer is more common in older adults, particularly men, but oropharyngeal cancer is on the rise in middle-aged, nonsmoking white men between the ages of 35 and 55.

The majority of these types of cancer cases are caused by HPV.

Take charge of your health and reduce your risk of oral cancer. If you smoke or chew tobacco, quit now (it’s never too late). Moderate your alcohol consumption to no more than one drink a day for women or two for men.

If you have children, make sure they receive the HPV vaccine, which is recommended for all girls and boys ages 11 and 12; a “catch-up” vaccine is also available for young women up to age 26 and most young men up to age 21.

You can be your own best advocate. Check the inside of your mouth in the mirror each month, and speak up to your dentist or dental hygienist if you notice any changes that concern you.

And to learn more about cancer prevention, be sure to visit www.preventcancer.org.

Full story

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As part of our commitment to continuous improvement for our Head and Neck Cancer Survivors' Support Network, we want to know how you think we are doing. We have a survey available here to capture your thoughts and ideas.

Your needs, and aspirations for the Network are important to us. We need you to help us design the strategy and provide the service which best connect, support and advocates for people affected by head and neck cancer. When providing your feedback be sure to include the ideas of your family/whanau and carers. They are a vital part of our community and we value their support and engagement with the Network.

So please take a few minutes over the next week to tell us your thoughts on our performance over the last year. We will share these findings in our Annual Report as part of our Annual General Meeting. The new incoming Committee will take your feedback on board as they prepare for the year ahead.

Here is the link https://www.surveymonkey.com/r/HNCNZcommunity

Thank you for your time and commitment to the Network. 

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Open Survey Results

The Network Open Survey opened for patient, carer, & family/whanau feedback on 3 March 2018. To date 19 people completed the survey.  This question asks patients+ to give their opinion as to how satisfied they are with various aspects of the head and neck cancer service in New Zealand. The questions are based on the requirements of the National Standards for Head and Neck Cancer 2013 (Draft).These percentages are the total of patients+ who reported they were satisfied or highly satisfied…
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Today's story comes from South Island member, Heather Anderson, who like another three of our members has a rarer form of HNC, adenoid cystic carcinoma. 

ACC (Adenoid Cystic Carcinoma) is a rare and unique form of cancer that is known to be unpredictable in nature, with a typical growth pattern of being slow and gradual, but over time can be progressive, insidious and relentless. There are some general tendencies, such as the propensity for it to spread into surrounding nerve tissue or metastasize to other areas of the body, yet each patient can experience their own diverse patterns and issues.

ACC occurs most commonly in the oral cavity with 58% of the primary tumors beginning in that area, but it can actually occur in as many as 38 different organs in the body. It is commonly considered to be a salivary gland tumor and grouped with other oral cancers in statistical studies since it occurs predominantly in that area.

The oral area includes the major and minor salivary glands, roof of mouth (palate), floor of mouth, gums, tongue, pharynx and lips. Though it is often considered to be a salivary gland tumor, ACC actually occurs in the broader grouping of all types of secretory glands (glands that secrete fluids) including tear glands, sweat glands, mucus and excretory glands.

Besides the oral cavity, ACC also occurs in the nose, nasal cavity, sinus, larynx, trachea, esophagus, ears, lungs, bronchus, brain, skin, lacrimal gland, breast, Bartholin's gland, vulva, cervix, and others.

Upon initial diagnosis it is most often a single tumor that is located within a primary organ and in about 5% to 10% of the cases can include spread into lymph nodes. In a limited number of cases it may have already spread into adjoining areas through nerve invasion or metastasized to the lungs, liver or bone as well. This takes place most often when it has been misdiagnosed for years.  (Adenoid Cystic Carcinoma Organization International – www.accoi.org)

I have previously made comments about the struggle those of us with this type of cancer face but when I sit down to write this I feel inadequate to the task – to write for me is to put my heart and my soul on the page …. There are no half measures in this process and so it is raw and extremely difficult.  It is worse for others and so I will try my best to do our situation justice – forgive me if I am remiss.

My diagnosis was in April 2007 …. That was my first surgery which I forced upon my surgeon, much to his disgust, as he was adamant that it was “only a cyst”!  In his defence all tests had shown up negative for anything nasty.

What he didn’t know was that he was not only fighting my conviction that I wanted it out! But also a visit in the middle of the night by my dear mother (departed from this world when I was 9) who gave me one word and one word only “Cancer”.  Now I was always taught – listen to your Mother and that is what I was going to do. I would not normally stand up to a surgeon but this time I did because I feared my mother’s wrath more than that of the surgeon. Well let’s just say when the results came back I did feel rather vindicated and not at all surprised.  

The surprise came later when a good friend with a PhD in Microbiology, who worked at Peter Mac Cancer Hospital and a had penchant for research, did the hard yards for me.  That was a very interesting “coffee with a friend” sitting at a quiet café in Melbourne central. I remember bits of this conversation - 80% of us will survive for the first 5 years, the next 10 years 40% will survive, the next 10 years 40% and so on.  Basically the longer you live the more likely it will return.

With that return comes one of the most painful cancers because it can travel peri-neurally ….. once nerve involvement is in place there is very little that can be done, and as some can tell you already the pain is excruciating with the medication being debilitating.  I was lucky – my determination and having private health cover meant I got the surgery I needed. I am constantly reading comment after comment not only here in NZ but overseas of people who were not so lucky. I recently read of a four month old diagnosed. ☹

Best treatment – surgery and radiation ….. one of our members was misdiagnosed to the degree that she is not able to have surgery.  Some are offered chemo but this is often a guinea pig type move as there is no supporting data to show it is beneficial. That said every Warrior is different and reacts differently.  Currently they are looking at combinations of chemo drugs and there may be some hope with immunotherapy.

My surgeon’s words to me have stuck ….. go away and research it and come back to me with your questions (which by the way he couldn’t answer) and ……. Go and live your life.   The last words at the time I felt were insensitive and not terribly helpful but as I have now come to realise they were profound and he wasn’t the last doctor to say that to me.

ACC diagnosis comes with it a sentence …. A life limiting sentence ….. Though I have not talked with all of the ACC people in New Zealand that we have found, those who I have spoken to were all misdiagnosed and as such the one and only life extending treatment that could be given (surgery) was delayed.  I believe I am the only one that actually got the surgery early enough even that won’t be completely “early enough” as I am getting signs and symptoms in the past year that would indicate to me that it is returning but this time there is “no protocol” for any diagnosis let alone treatment in New Zealand.  

This “no protocol”, also read “palliative care”, treatment is demoralising as it treats you as if you are already in the pine box and of no further use to the world….This I deny strenuously.  As such we must look not only to find those medicos in New Zealand who will treat us as human and allow us the dignity of being able to keep fighting and/or we hunt down the alternatives …. The research trials, the alternative therapies – no longer do we have the luxury to stay within the confines of the New Zealand Health Board system.  We must venture out and put our toes in the water and try these different avenues even if they don’t work we have at least tried ….. if we try and we fail then someone following us will know that is not a good avenue and will try something else.

This is the same for all rare diseases no matter what they are. “Rare” by definition immediately means there is little information, interest or protocol. Because our type of cancer is not restricted to a particular part of the body some of our Warriors do not meet the criteria for our HNC group – to this end we have set up a Facebook group to try and gather together and support all those who are dealing with ACC.

 If we Try then we have Hope.  Believe!

Heather Anderson

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Cancer diagnosis and treatment can be a pretty bleak time and any help will be appreciated. That help can come in the form of a pet - and the (usually) relentless positivity and enthusiasm of a dog is one of the best – as this week’s lead story suggests.

The second story outlines some of the areas that a recovering survivor may need help with.


# You have no idea what you've forgotten.

# Insurance is just gambling where you bet against your house, car or health.

# “Better late than never” doesn’t really apply to job interviews


Dad launches ‘Crimewatch’ appeal for dog that saved his life from cancer
(U.K.) Kemo was bought as a puppy by Olly Hall’s wife to help lift his spirits after cancer treatment

A father has launched a Crimewatch-style appeal to find the missing dog that helped him beat cancer. Olly Hall, 61, has even enlisted the help of a pet detective to try and find Kemo, a Staffordshire Bull Terrier, who went missing on February 8.

Olly’s wife, Deborah, 54, had bought her husband the dog as a gift a couple of years ago to lift his spirits during gruelling rounds of chemotherapy for throat cancer. Olly, a lorry driver from Bedford, who is now in remission, credits his pet with helping to save to his life.

‘We were so low after the cancer diagnosis and Kemo was just a bundle of joy. He really lifted our spirits and was a great distraction for Olly. says Deborah.

‘We have four children and two grandchildren, everyone loves him and he is absolutely one of the family.’ After several weeks of searching for the two-year-old staffy the family have now enlisted the help of former policeman and real-life pet detective who is spearheading a nationwide campaign called Finding Kemo.

Full story:

Cancer recovery and rehabilitation available after treatment
(U.S.) If you or someone you love have been through cancer treatments and now have problems you didn’t have before your diagnosis, there is help available.

Cancer recovery and rehabilitation is designed to help cancer patients overcome the side effects of cancer treatments, such as chemotherapy and radiation.

The program helps cancer patients/survivors in the following ways:

  • Empower and give back a sense of control.
  • Reduce anxiety and common fears.
  • Provide the knowledge/tools/exercises to help with physical impairments such as neuropathy, pain, difficulty swallowing, weakness/fatigue, distress, lymphedema.
  • Ability to return to independent living.
  • Provide a better quality of life.

Services available through the cancer recovery and rehabilitation programs include:

  • Physical Therapy
  • Increase energy and endurance.
  • Alleviate/manage pain.
  • Increase strength/decrease weakness.
  • Increase balance/decrease falls.
  • Treat lymphedema.
  • Treat sensory problems/neuropathy.
  • Improve range of motion.

Occupational Therapy

  • Improve shoulder range of motion.
  • Alleviate/manage shoulder and upper arm pain.
  • Improve ability to perform activities of daily living (dressing/bathing/driving, etc.).

Speech Therapy

  • Improve speech and swallowing.
  • Improve cognitive skills (memory, problem solving for activities of daily living skills).

Nutritional Counseling

  • Improve nutrition for overall health.
  • Diet recommendations for changes in taste due to treatments.

Mental Health Counseling

  • Reduce anxiety and depression.
  • Restore a sense of control.
  • Increase coping skills.

Tobacco Independence

  • Improve overall health.
  • Reduce probability of cancer reoccurrence.

Every cancer survivor, whether he/she is currently in treatment, in remission or living with cancer, should be given the chance to heal as much as possible and live life to its highest potential.

Full story:

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Yes, we need more information


"Inviting patients to read and review their health information, especially the notes written after a medical visit, is an important way to improve communication between patients and health professionals ..."

I’ve been thinking about information. How much information about their cancer should a patient receive and how should it be delivered? I’ve read the Open Notes website! (https://www.opennotes.org/) This covers a movement in medicine where clinicians share their notes with the patients while they are writing them or shortly thereafter.

But there are other areas where information is needed too. How about educating patients about the nature of their cancer? Ignorance isn’t bliss; denial doesn’t work for long. I’ve learnt this from experience when my fertile imagination has filled in gaps in knowledge. Without knowledge, we are not going to take such good care of ourselves. Is keeping information from us acceptable in the 21st Century?  We've come a long way in the last century but we still have a way to travel down the transparency and patient education highway. 

What is Open Notes?

What follows is a series of quotations from their website.

OpenNotes is the international movement that’s making health care more transparent. It urges doctors, nurses, therapists, and others to invite patients to read the notes they write to describe a visit. We call these open notes  ...


Designed for health professionals learning about open notes, the Implementation Toolkit provides materials to help you gain support in your health system, think through policy decisions and communication materials to prepare for launch, and get the most out of note sharing once you’re up and running ...es materials to help you gain support in your health system, think through policy decisions and c

Making the Case for Open Notes

Inviting patients to read and review their health information, especially the notes written after a medical visit, is an important way to improve communication between patients and health professionals, to enhance engagement, and to help patients become more active in their own care. Moreover, research continues to show that engaged patients have better health outcomes ...

Patients Want Open Notes and Report Benefits from Reading Their Notes

The original OpenNotes study involving patients at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Harborview Medical Center in Seattle found that 80% of patients offered open notes read at least one note over the year-long study period, and 99% wanted the practice to continue, whether or not they chose to read their notes. Subsequent survey data from Kaiser Permanente (NW) and the Department of Veteran’s Affairs (VA), the first system to adopt open notes across all disciplines, have shown similar results ...

Study Highlights:

77-87% of patients said open notes helped them feel more in control of their care.
60-78% of those taking medications reported better adherence.
85% of patients said they would choose a health professional based on the availability of open notes.

Get Access
Your notes are about you. Being able to read them is not a privilege. It’s a federally protected right. (I think this applies in NZ too.) Today, more than 21 million people can read their notes when and where they want. We’re working hard for the day when all patients can do the same ...

Here is a great video from the website. 

Quotes from the video: 

"It didn't turn out to be the time suck people thought it would be." (GP)

"He accepts me as owner and prime driver of this little collection of cells." (Patient)


What about educating patients so that they understand their disease and can cope with it better?  At present, patients might be given a book about Head and Neck Cancer from the Australian Cancer Society. They might get a booklet about the multidisciplinary meeting and a sheet about a procedure they will undergo, as in my case, a marginal mandibulectomy. These days they might be referred to this website and Beyond Five’s excellent 3D animations.

All the above is good but we can do better to encourage people to take more interest in the technicalities of their cancer. I wonder if a double sided sheet with internet links might be helpful for patients and carers with a thirst for knowledge and education. Imagine if we put our own local information in a document like this that treats the patient or carer like an intelligent person.


No handout is going to work properly unless someone, maybe a nurse, could sit with the patient for ten minutes, go through the material and point out how it might be useful.

Finally, when i was researching this story, I found the article below which is about patient/clinician communication and information during ward rounds. Well worth a read. 


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This is Susan Vujcich's story. Susan is from Northland and was treated in Auckland last year after a tortuous path to diagnosis. The photo is of Susan not long after her treatment ended.

In June 2017,  I was diagnosed with squamous cell carcinoma of the lymph gland, secondary to a suspected primary cause in the throat.

Path to diagnosis

Cancer was not new to me.  In 2010 I was diagnosed and surgically treated for early follicular neoplasm of the thyroid resulting in a total thyroidectomy. That previous cancer experience proved to be a walk in the park compared to this latest journey I have been on.

I remember the day my diagnosis was given to me. I felt numb and completely devoid of emotion.  In fact I laughed with my GP at the absurdity of how many different types of cancers a person could get in their life.  I realise now that I was actually in complete shock at the enormity of what I was faced with. It was some months later before I could allow myself to cry.

I had first noticed a lump in my neck.  I thought it must be a swollen lymph gland due to a virus I’d picked up.  I monitored it for some months thinking that I would ask my GP about it on my next routine visit.  

In hindsight, I should never have delayed getting this checked out.  When I showed it to my GP she thought it was probably just a reactive lymph gland and nothing untoward, but due to my history,  she would arrange an ultrasound. This took some weeks before I could get an appointment.

The result of the ultrasound was that it warranted further investigation with a biopsy, leading to a months-long wait that that appointment.  

The result of the biopsy was squamous cell carcinoma.

Thereinafter followed a chain of events that was not for the faint-hearted.  It was a whirlwind of procedures over the following months. 2017 was to become a year to write off and the hardest challenge I have met in my life to date.

I was already recovering from elective abdominal surgery in June and was still fairly immobile. However, it became a priority to find the primary cause of my cancer. Following my biopsy, I had a PET scan in Auckland which showed avidity (uptake of glucose)  in the throat and right neck area.

I had a full  bilateral tonsillectomy, pharyngoscopy and further biopsy at Whangarei Hospital in July 2017.  

Unbelievably the results did not show any cancer.  

I was therefore referred to Auckland City Hospital multidisciplinary meeting  (MDM) with an “unknown primary” cancer. The MDM was one of the most daunting experiences I have experienced in my life but the panel of medical professionals were very thorough and completely focussed on finding the primary site of my cancer.  

During a very prolonged and uncomfortable scope of my still-recovering throat, one of the professionals spied an abnormal vascular pattern on the right base of my tongue.  

I was to become very thankful for their thoroughness that day, because a further biopsy, and reanalysis of the entire previous tonsil specimen by the Whangarei Hospital, found the primary site in the right tonsil.  Hallelujah !

I was fully diagnosed with T1 N2b P16 positive squamous cell carcinoma of the right oropharynx in August 2017.


Next I heard my treatment plan.  I was to have chemoradiation therapy in Auckland City Hospital.  My thirst for knowledge had me researching all available avenues for information regarding what I was up for. I firmly believe that knowledge is power.

Joining The Head and Neck Cancer Support Group on Facebook gave me a wealth of knowledge from previous patients, survivors and carers of head and neck cancer patients with cancers exactly like my own.  

I discovered I needed to expect one heck of tough gig.  

On 4 Sept 2017, I commenced 35 fractions of radiation (over 7 weeks) and two cycles of Cisplatin chemotherapy (final dose omitted due to concerns around hearing loss).  

The treatment was gruelling and the side effects were horrific.  I developed terrible anxiety, not lessened by the claustrophobia I experienced from having to wear my mask every day whilst in the radiation bunker.

The anxiety really affected me.  I was away from my home and farm, husband at times, my three school age children, and I severely doubted my mental and physical ability to get through my treatment.  

Thankfully my wonderful extended family recognised my lack of strength and came from afar (Tasmania and Gold Coast) They, along with my husband and a psychologist appointed to me by the hospital, took me under their wing and pulled me through.  

There was lots of mindfulness and meditation needed and a concoction of antidepressants, anti-anxiety and sleeping tablets taken.  It had basically come down to whatever I needed to pull myself through the next seven weeks.

I felt disconnected from life itself; it was like a living nightmare. Nausea from the chemotherapy and side effects from the anti-nausea meds were the first hurdle, followed by taste changes and metallic mouth.  Then came the pain in the throat from the radiation burn, ulcers, no saliva, mucositis, constipation, weight loss and exhaustion.

With dogged determination and a raft of morphine based painkillers I kept on eating through the pain, such was my aversion to the thought of having a PEG feeding tube inserted.


I left Auckland for home on 20 October 2017 without a PEG tube but a wreck and very worried that I would have a serious addiction to morphine,anti-anxiety meds and sleeping tablets.  The next two weeks were my worst of the whole treatment phase. I basically lived on sips of Ensure and water. I lost more weight. My total weight loss was 10Kg (from 58kg – 48kg).

Little by little, day by day, week by week, the pain subsided, my energy levels improved and I could eat little bits of soft food. My post treatment checks with Oncology went very well. They were very pleased with how well I’d pulled through.  My PET scan at three months post treatment showed no avidity and Oncology were very pleased to inform me that I am, at this stage, 100% treated.

I am now starting to patch my life back together.  I have put on a kilo of weight and am now eating a wide variety of food.  The pain in my throat is now non-existent. The lack of saliva continues to be a problem though and is possibly with me for life.  

So armed with a water bottle wherever I go and salt and baking soda mouth rinses still my best friend, I have a newfound motivation to achieve new things.  I have joined the local gym, taken up a dance class and enrolled in distance learning University study. Life is good post-treatment and post-cancer.

What caused it?

I am left pondering how on earth I ended up with cancer in my throat/neck from the HPV virus. I have been in a mutually monogamous marriage with my husband for 29 years.  I certainly knew that the HPV virus can cause cervical cancer in some women and I was in agreement that our daughter should be vaccinated against it when called up at high school.  

I did not know that HPV is the cause of some throat and neck cancers.   I did not know that HPV is so common that almost every person who is sexually active will get HPV at some time in their life if they don’t get the HPV vaccine.  I never knew that most people with HPV do not know that they are infected and never develop symptoms or health problems from it.

I guess fate had it that I was one of the unlucky ones.  My diagnosis and treatment were life-changing.

Paying back

I now recognise how precious life is and I feel blessed that I get another shot at it. I am keen to assist in being an advocate for the HPV vaccine in both boys and girls in NZ and in becoming a mentor for future HNC patients.

For me, during this phase of my life,  knowledge was strength. If I can impart some of my knowledge learnt during this period to others, then it will be very rewarding.

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One of the side effects of radiotherapy and chemotherapy is mucositis -` the painful inflammation and ulceration of the mucous membranes' - particularly in the mouth and digestive system which makes swallowing a painful challenge. Lead story this week suggests help could be on the way.

Second story  is another step on the gene therapy area.


# Rhinos are just overweight unicorns
# If people actually lived every day as if it were their last, basically nobody would ever go to work or school again.
# The core function of a mobile phone has become it's least important feature.


Anti–Oral Mucositis Drug Granted Breakthrough Status
(U.S.)The US Food and Drug Administration (FDA) recently granted Breakthrough Therapy designation to GC4419 (Galera Therapeutics) for reduction of the duration, incidence, and severity of severe oral mucositis induced by radiation therapy with or without systemic therapy. The FDA has also granted GC4419 Fast Track designation.

GC4419 is a highly selective, potent small molecular dismutase mimetic. The drug is able to rapidly convert the superoxide generated by radiation therapy into hydrogen peroxide, thus reducing the effects of radiation-induced severe oral mucositis. (Superoxide damages epithelial cells in the mouth.)

The lead indication for GC4419 is in patients with head and neck cancer, for whom radiation therapy is a mainstay of treatment. Approximately 70% of patients receiving chemoradiotherapy for head and neck cancer develop severe oral mucositis, defined by the World Health Organization as grade 3 or 4. These patients typically experience significant pain and are unable to eat solid food or drink liquids.

Full story:

Biomarkers to Personalize Treatment of Head and Neck Cancer
(Brazil) Researchers at A.C. Camargo Cancer Center in Brazil have found markers in the blood of head and neck cancer patients that can help identify cases that are likely to evolve to metastasis or develop local relapse after treatment. 

The results of the study, which was supported by FAPESP, were published in the journal Head & Neck.

“Besides pointing to new therapeutic targets, the findings can contribute to more personalized and effective treatment. If physicians know which patients run a heightened risk of progression of the disease, they can opt for systemic treatment with more powerful drugs,” said clinical oncologist Thiago Bueno de Oliveira, a co-author of the article.

Head and neck cancer is most prevalent in developing countries, representing the ninth most common type of cancer in the world, with 700,00 new cases per year according to the International Agency for Research on Cancer, which is part of the World Health Organization (WHO).

Full story:

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New techniques and developments in applications like robotic surgery, immunotherapy, gene therapy and others are adding to the traditional weaponry of chemotherapy, radiation and surgery.

Hydrogel is now looking a potential winner as well – as today’s lead story suggests. The second looks at gene therapy research in Australia.

# In many ways, romantic comedies are more harmful to gender equality than violent movies are.
# Ironically, the Internet was actually created to save us time.
# A spider is a networking bug.


Researchers Package New Immunotherapy in Hydrogel to Better Fight Cancer

(U.S.) Scientists from Rice University and the University of Texas Health Science Center at Houston have developed STINGel, a therapy that combines a new class of immunotherapy drugs with an injectable hydrogel that releases it in a more prolonged, steady dose.

The researchers found that slow-release peptide gels could continuously deliver immunotherapy drugs to tumor sites for extended periods of time.

The hydrogel, which is harmless to normal cells, has immunotherapy drugs inside called cyclic dinucleotides (CDNs), which have been shown to attack cancer cells. CDNs are a powerful new class of immunotherapy drugs known as STING (Stimulator of Interferon Genes) agonists, currently in clinical trials.

However, research has found that the CDN drugs are flushed quickly from the body, and current trials require multiple injections.

“The normal approach to CDN delivery is simple injection, but this leads to very rapid diffusion of the drug throughout the body and reduces its concentration at the site of the tumor to very low levels," Rice chemist and bioengineer Jeffrey Hartgerink said. "Using the same amount of CDN, the STINGel approach allows the concentration of CDN near the tumor to remain much higher for long periods of time.

Full story:

Benitec Biopharma Launches its Phase 2 Oncology Study in Australia

(Australia)  Benitec Biopharma Limited (ASX: BLT; NASDAQ: BNTC; NASDAQ: BNTCW) ("Benitec" or "the Company"), a biotechnology company developing innovative therapeutics based on a combination of gene therapy and its patented gene-silencing technology named ddRNAi or 'expressed RNAi', has announced the start of its Phase 2 clinical study in Australia with BB-401 as a treatment for patients with head and neck squamous cell carcinoma (HNSCC).

The Phase 2 open label study has been designed to explore the safety, tolerability and efficacy of BB-401 following intratumoral injections into the lesions of patients with recurrent or metastatic HNSCC.  The study will enrol up to 30 patients at 5-8 sites across Australia and Russia.  The trial is registered on www.clinicaltrials.govwith the identifier: NCT03433027, where more details can be found.

Chief Executive Officer Greg West said, "I am delighted that we have received approval to commence the study in Australia.  This represents an important milestone for us in the progression of BB-401 as a treatment option for patients with advanced head and neck cancer who have failed all other treatment modalities.  We are on track to start screening patients shortly."

BB-401 is a recombinant DNA construct that produces an antisense RNA with specificity against Epidermal Growth Factor Receptor (EGFR).  More than 90% of lesions from patients show significantly increased EGFR levels associated with HNSCC.  The goal of this study is to inhibit the expression of EGFR in the treated lesions and thus control the progression of disease and increase patient survival.

For further information regarding visit the Benitec website at www.benitec.com.

Full story

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This is the third instalment of Anne's story. This time it is about her radiotherapy treatment which was particularly hard for her because of the previous surgery. The aggressive nature of the cancer made extensive radiation necessary. 

Next step on my journey is radiation and I have been told it is imperative that I have it within a 3 month time frame and have been warned me that it will be brutal. It has to be very intense due to the fact my tumour was aggressive and very fast growing (from CT scan to surgery it had grown over 50 %). It was also undefined and had started to break up so he wanted to be sure we covered all areas. He was concerned with it getting into my brain and lymph nodes.

April 26th

I have an appointment with Radiation/Oncologist Dr Chan. He goes through my radiation program with me. I am to have 60Gy/30 fractions over 6 weeks to nasal passage and bilateral cheeks.

Dr Chan reinforced what Professor Tan had told me and warns me of the side effects : I could get burning of my skin, lose my sense of taste, get dryness of the mouth, dry eyes, tiredness, ulcers in my mouth, difficulty in swallowing and eating.

Towards the end of my treatment I would definitely require feeding with a PEG tube and I would be in hospital, no maybes about this.

I was very adamant that I wouldn’t as I was stubborn and determined which would see me through.

He shook his head and said we will pick you up when required. If I had any problems I was to tell them as there were things they could give me to help me through. I would also be seen weekly.

April 28th

Over  to Palmerston again to have my mask made and tattoos done.

My appointment is 11am and I am told I will be there until 4pm. The staff are all really nice and we get through all the things relatively quickly. The only problem is when making the mask. The stuff they use is soft and wet but as it dries it becomes hard and pulls tight. I had to have a tube in my mouth and as the mask was drying it pulled tight and the tube was digging into the sensitive part of my mouth where the gum had been removed. Very painful but now I have my pillow and my mask ready for the next stage.

May 18th

Started my radiation today and this is what it looks like. I have been given health non-tonic cream to moisturise my face.

May 26th 

So I have had my 7th radiation treatment & my face is blotchy with a distinct mesh like pattern. Blisters are forming on my nose, my nose is bleeding, my face is tender The inside of my mouth is dry and very sensitive, nothing tastes right and food is sticking in my mouth & throat.  

On Monday I asked the nurses about it. I was sent to clinic where I was given a whole bag of different potioms. Oral mint moisturiser for my lips. I can also place a small amount on my tongue which will moisten it. Oralube spray for my mouth, Difflam for my throat and to relieve the aching jaw, Dermassist cream for my face and if the skin breaks I am to use Flamazine which I was also given. I am also given Xylocaine Viscous for when I have trouble swallowing or eating. My nose I am treating with nasal rinses to keep it as clean as possible.

June 2nd

As each treatment is given and by the end of this week my mouth is really sore and covered in ulcers, to the point I am struggling to eat but am managing to drink homemade vegetable soup through a straw.

My face is so swollen and tight that it feels like it is going to split. I also have extreme fatigue.

 3rd June

I wake up and my mouth and tongue feel very lumpy. Have a look and they are covered in white spots. Go to the chemist who has a look and gives me Nystatin for thrush. I feel really miserable and just want to sleep which I do except to wake up and take pain killers.

Go back for treatment on Monday and they don’t think I look very good. Explain about the thrush so am sent up to the nurse. She asks about eating and goes to give me some Xylocaine Viscous. Told her I already had some which Dr Chan had given me so she asks why I wasn’t using it so I could eat. I told her I couldn’t because you are not allowed to eat or drink within an hour of taking the medicine as the mouth will be numb and could result in burns etc.

She said very nicely, Anne you are a radiation patient and radiation patients ignore instructions which is why we give it to you.

Take the medicine (you don’t swallow it but use it like a mouthwash) and then have your meal but make very sure it is not too hot. So I tried this and WOW what a difference. I could eat without pain.

My lips were also raw and bleeding which made radiation painful as I had the tube in my mouth and it rested on my lips. It was excruciating so when I went the next day I asked about using the Xylocaine while I had treatment and was given the ok. So I would take two doses in empty tablet bottles, one for my lunch and one for my radiation. At least now radiation was no longer painful and I could eat my meals. Painkillers deal with the rest of the pain.

I must be doing something right as Dr Chan is happy with me. I am still losing weight but it has stabilised and is in lesser amounts so in view of what I am experiencing with my mouth, he is happy.

In fact he is amazed that I am eating meat, vegetables etc.

I mainly have soup and casseroles made with fresh vegetables. I put everything through the kitchen whizz so I can get it down better

I am still very tired but doing ok. By Thursday the 18th June I am having trouble. I lie on the bed for treatment and the whole room spins rapidly and I feel ill. It eventually stops but same happens when I go to get up after treatment.

Once again I am sent to Clinic. I am still feeling really unwell and Dr Chan admits me to the Cancer Day Ward with a view to admitting me. He thinks I am dehydrated despite me constantly drinking (I carried a sipper bottle with me at all times). I am given IV Saline but this makes no difference.

The doctor comes back and gives me some tablets saying, if this is the problem the tablets will help within half an hour. She thought it could be vertigo. Within 15 minutes the nurse came to me and said, you are feeling a lot better I can tell because you have colour again and look 100% to what you did. She was absolutely right the room had stopped spinning so now I had to take meds for vertigo.

The radiation had damaged my ears. I was allowed home.

I finished radiation without any further problems apart from loss of hearing.  My face at the end of treatment.

The sores below my nose are where I had sutures and the radiation has broken them down.

I have survived and have not been admitted to hospital or had a PEG for feeding much to Dr Chan's amazement. He even sat and asked me what I ate to avoid it.

I think using the Xylocaine to enable me to eat was a huge factor and eating nutritious food. I still have side effects and some may be permanent. The dry eye, burnt skin, sores under my nose, bleeding lips, vertigo, ulcers and thrush and taste have all cleared.

I still have dry mouth, hearing loss which may be permanent, nose bleeds, and my nose has totally collapsed and fused itself so I am unable to breathe through it. I have also gained scarring on my lungs.

I have had 2 CT scans post radiation which show I am clear of cancer.

I am broken but not out. I am disfigured but not down. My face does not define me.

The next step on my journey is reconstructive surgery which is already in the planning process. Professor Tan is consulting with his colleagues and making me a 3D nose. This, he has warned me, involves 3, maybe more surgeries and will involve taking cartilage from my ribs and tissue from my neck and forehead. I see him again in April so should know more then as to when this starts.

Another year of huge challenges but I am grateful as I have survived.

Anne is seeing Professor Tan very soon to have the first of her reconstrutive surgeries. 

Read more…

On Monday we published the first part of Anne Howe's amazing story covering the difficult path to diagnosis. Today we have the story of her two surgeries, one very long, one smaller to reconstruct her nostil. 

First Surgery

Professor Tan, from the Gillies Research Institute, had asked permission for the remainder of my tumour after the necessary part had been sent to pathology. I had no need for my tumour and the sooner it was gone the better.

After I agreed, all the documentation was filled out.  (I still get newsletters six monthly and have been invited to some interesting discussions on maxillofacial surgery. Interesting since I’m an ex nurse, but too far to travel for a short time.)

At this point I was taken into a side room where I was seen by a photographer and had my own photo shoot at many different angles.

Next was seeing the registrar, Dr Che, who explained a lot of things like the fact I would be in a lot of pain but would be given good meds to control this. I would be on liquid diet, could have tubes in my nose and be fed through this, may have bone taken from my hip, my face would not be a nice sight and  at some point I would crash but that my team of carers would always be there to help me.

Panic started to set in.

Professor Tan came in to explain my surgery, starting by telling me that he was sorry he couldn’t give me informed consent. He told me the most he could tell me was that he would remove the tumour, and replace what he took by bringing the flesh from my cheeks around as a flap and  using that to fill the area. He might have to take bone from my hip but he wouldn’t really know until he operated.

He also warned me my face would look horrific and it would be very painful but he would give me good medication to keep it under control. I had to be very careful to not get any infection as that could cause the whole thing to break down and not heal properly.

With very shaking hands I signed the form and a very gentle hand was placed on top of mine. He told me he would do the very best he could.

Thankfully I didn’t have long to dwell on what I had just been told as the nurse came to walk me down to theatre. It was then I lost it and the tears fell. The enormity hit with full force. We walked slowly and  by the time I reached theatre I had composed myself.

Everyone was so nice to me. The anaesthetist even sang as I was sent off to sleep. For my benefit or not I will never know, but he had a nice voice.

Next I knew I was in recovery and it was very late. I was in horrendous pain to begin with and had an extremely dry mouth. A drink of water proved disastrous as even the smallest amount dribbled back out but with a straw I managed to get a little down. A lemonade ice block was much better.

Trying to answer questions was a mission as my mouth would not work the way I wanted it to. So writing became my form of communication for a day or so. 

I had no tube in my nose either.

The next morning I was not allowed up to the bathroom until I had seen my face.me Professor Tan explained that he had removed the tumour  from my nose, my upper lip, my upper gum and part of the roof of my mouth.

My official diagnosis was moderately differentiated squamous cell carcinoma of columella, nasal septum, nasal tip, upper lip and pre-maxilla. T4NoMo

Treatment summary: Full  thickness resection of the central three quarters of the upper lip, anterior maxilla including full thickness of the lateral half of the alae & underlying piriform apertures, distral part of the nose including two thirds of the nasal septum & repair of deficit with bilateral FAMM flaps, nasiolabial flaps & septal hinge flaps.

(From here on I have reproduced Anne’s diary, edited. We have the full version but have reproduced only excerpts here. Anne kept a blog and had the nurses take photos nearly every day. I have reproduced only a few of the photos here. Ed.)

16th March Day 1

My diet consists of clear fluids only – clear soup, lemonade ice blocks, jelly and Fortijuice. I can drink coffee but no milk allowed so needs must and  I actually got to like it. My pain levels are not as bad as I thought they would be although they were pumping meds into me regularly. I can shower but only from the shoulders down. I sleep most of the day.

17th March Day 2

Professor Tan came round early and it is today that he really explains what he had done. He gives me a face wax by removing my dressings. Owweee, that was painful, just a tad. He is happy with how it looks and I can have the drains removed. He also explains my difficulty in drinking and talking etc which is due to the fact he has taken flesh from some places and put it in places that it was never designed to be used for. So like a baby I have to learn to do these things all over again.

I have had my shower and been promoted to a laziboy for more comfort as I am not allowed to lie down at all. Now it’s time to remove the drains. The first one comes out easily but the second one just won't give. A 2nd nurse comes and together they work on it. They tell me they may just have to be a little forceful as it may be adhered to flesh but they will be as careful as they can. They give me extra meds. Well, when they become forceful, I nearly lift into space but it does come out. Seems it was connected by an internal stitch.

Saturday March 18th  Day3

One word “antibiotics” and I have a massive meltdown. Poor nurse. She only came to see if I could swallow an antibiotic pill. I have just finished a whole month of taking them to fix the pimple/abscess on my nose. I have been on them, IV, since my surgery with no problems. I will get over this. I will. This was what they explained would happen (I would crash at some point) and look after me they do. Constant visits throughout the day to make sure I am ok.

A positive is I had some pain killers at midnight and I slept until the nurse woke me for my antibiotics without needing some more. My mouth was dry and sore when I tried to talk so I have more pain relief on board now. Things are looking up as it has made such a huge difference without the drains and my face feels much more comfortable. 

Sunday 19th Day 4

A special treat today. So long as I can tilt my head right back and we get no water on my face then my daughter can wash my hair. It’s disgusting as it’d covered in iodine blood etc. Does nothing to make you feel good so we managed it and  it feels so good. Feel like a million dollars. My face is also so much better looking & here’s my new pic.

Monday 20th Day 5

Professor Tan comes in & tells me he is amazed at my rate of healing. I can have my packing out and if there are no further bleeding or problems I can go home after lunch. He doesn't want me going back to Dannevirke until after I have had my stitches out as I would be too far away if anything went wrong so I agree to stay in Upper Hutt with my daughter and family.  

A nurse comes in to remove my packing and it feels like it is coming from much further back than my nose and seems to go on forever. The difference once the packing is out is amazing. To be able to breathe through my nose is fantastic and I seem to have lost the real heavy headed feeling I had.

No further problems so I am sent home to my daughter's in Wellington and my own private nurse, two year old grandaughter, Ava. 

Friday 24th

It is time to get the 100+ external stitches removed. It takes just over an hour. I also see Professor Tan as all the antibiotics have given me thrush. He is happy for me to go home to Dannevirke. He also explains that I will be back in April to have the little flappy piece below my nose divided and he will create a left nostril as at this point I simply don’t have one.

Photo below shows the flap piece in the middle just under my nose.



Second Surgery

13th April

I only have to stay overnight for this surgery and it all goes well. 

Photo below shows my new nostril after surgery.

20th April

Stitches removed from 2nd surgery

After this, Anne had radiotherapy, a story we will publish soon. 


Read more…

The Nationwide Health and Disability Advocacy Service is a free service that operates independently from all health and disability service providers, government agencies and HDC. If you want to know more about your rights when using health or disability services, get questions answered, or make a complaint, we can help.

Freephone: 0800 555 050

Email: advocacy@advocacy.org.nz



We were privileged to hear a talk about the Health and Disability Advocacy Service by advocate Emma Smith. From the North Shore branch, she explained how the service is designed to resolve issues at an early stage between patients and the providers. It has a contract with the Health and Disability Commissioner to provide this assistance to patients. 

Advocates are on the side of the patients and act as facilitators, they are not adversarial, not investigators or lawyers with only a few complaints going right through to the Commissioner. The service is in fact a tool for quality improvement.

She gave an example of a patient whose providers avoided informing her of her poor MRI results. Different providers passed the buck and maybe lied. Their job was to try to resolve the issue with the providers and the patient. We have a right to be fully informed.

When they see numerous complaints about the same provider they can notify the DHB.

One interesting  complaint was from a patient who woke up from surgery with no teeth. She had not been informed and wanted to know what happened. The hospital said nothing happened and the case had not been fully documented. It’s hard to resolve issues when no documentation exists.

She said that the providers come under the Code of Rights but ACC does not. This is frustrating for patients and there needs to be more accountability. However, when there is a treatment injury, they can help people with ACC and the provider.

Emma mentioned one resolution process where the patient was so eloquent that the provider asked her to contribute to a series of patient stories.

They can help us obtain our medical notes.

The HDC and Advocacy service act to uphold the Code of Rights as you might often see on a poster in hospital waiting rooms. 

There is a wealth of information on the HDC website.


Read more…


Even after successful treatment a head and neck cancer survivor is still likely to face a number of challenges – and not everyone can cope with them. Lead story this week is about post treatment suicides and why depression alone is not a warning sign.

The second story is another pro-exercise piece. However I would suspect someone who does no exercise at all is probably in pretty poor physical shape anyway so the fact they are at increased risk of cancer is hardly a surprise.

# You’re unlikely to see negative reviews when shopping online for a parachute
# Adulthood begins when dandelions stop being flowers and start being weeds.
# You shouldn't worry if your life feels incomplete. If it was complete you'd be dead.


More Can Be Done to Prevent Suicide in Head and Neck Cancer Survivors
(U.S.) These findings bring light to a pressing problem in this patient population, and will hopefully pave the way for more awareness and potential change in practices.

While head and neck cancers make up a small percentage of overall cancer diagnoses, the number of survivors who commit suicide is, unfortunately, higher, according to research recently presented at the 2018 Cancer Survivorship Symposium.

“We were not surprised that the burden of suicide was high among survivors of head and neck cancer. We have seen from the patients and from the literature that head and neck cancer survivors are very courageous men and women who have to deal with a lot of physical, social and emotional issues after their treatment,” study author Nosayaba Osazuwa-Peters, BDS, MPH, CHES, instructor in the Department of Otolaryngology-Head and Neck Surgery at St. Louis University, said.

“The surprise, however, was what we found when we compared head and neck specifically to the other common cancers in the US. Yet, we found it is indeed a top two cancer site for suicide. That was the surprise.”

Both males and females with head and neck cancer had about a 45 percent higher suicide ratio compared to all other cancers

One possible explanation for the findings is that survivors of head and neck cancer face significant and unique quality of life issues, such as facial disfiguration, taste change or, when it comes to swallowing, survivors face pain or a lack of ability to do so.

“There are several other factors than depression that could drive a cancer survivor into suicide, and we are not addressing these very much because, from a clinical perspective, the focus has heavily been on depression,” he said.

Other contributing factors Osazuwa-Peters mentioned were pain, fear of recurrence, loss of employment and financial toxicity.

Full story:

Sedentary Lifestyle Causes Risk of Lung, Head and Neck Cancers to Skyrocket
(U.S.) Countless studies have illustrated the benefits of exercise both for patients with or without chronic diseases. Despite an increasing body of evidence suggesting a lack of physical activity can increase the risk of certain diseases, it is not widely recognized as a risk factor for cancer.

Two new studies published by Cancer Treatment Research Communications and European Archives of Oto-Rhino-Laryngology have directly linked physical activity with the development of lung cancer and head and neck squamous cell carcinoma (HNSCC).

These findings add 2 more diseases to a growing list of cancers that result from sedentary behaviors.

Patients who reported no history of regular, weekly, or recreational exercise had a greater risk of developing cancer compared with those who engaged in at least 1 weekly session of exercise, according to the study.

Full story:

Read more…

Network News - 5 March 2018

Kia ora whanau,

We know that some people do not "do" Facebook, and are unlikely to sign up to our website. These folk need to connect and receive support, so we are taking a new approach. We are introducing What's App, the Smartphone app, that connects people without the need for the Internet. We think this might suit some of our men. It's a simple way of knowing what's going on that doesn't require constant communication and attention. To get started just text me +64 0212130178 and we will connect you. Find out more here. http://headandneck.org.nz/news/connect-with-whats-app

We want to know how the health system is working for you, your family/whanau and carers. So we have opened a Patient+ Feedback Survey to pick up your thoughts as they happen. Our survey is open and you can take it any time. We suggest you give feedback following an outpatients visit, treatment, or other interaction with the health system. You can find out more about our new survey here. http://headandneck.org.nz/news/open-survey-we-want-to-know-about-your-experiences


Our Network - update

We are busy working to improve the Head and Neck Service in the Auckland/Northland region. The working group meetings began last week, and we are fortunate to have a number of patients from our Network contributing. We will keep you posted on developments and from time to time ask your advice. 

Auckland Meeting

You are all invited to our April meeting. We are holding an evening meeting at Domain Lodge, Boyle Cres, Grafton, Auckland at 6pm on Tuesday 3 April. You are most welcome to join us, meet new people and find out what we can do for you.

Network News

Our Network continues to grow. We are New Zealand focused, and welcome new folk from around the world. We are all connected by our head and neck cancer experiences. We are delighted to have 787 Twitter followers, 313 people in our Facebook group, 145 website members, and 491 LinkedIn contacts. If you want to connect with us through any of these channels you can do so here. Our website, http://headandneck.org.nz/Facebook Group, Twitter, https://twitter.com/HeadNeckNZ, LinkedIn, https://www.linkedin.com/in/headnecknz/

New Members

 Some of the new folk, will be in your area.  As you know, you can click on the names to send a message to each of these people, and welcome them to our Network. Don't forget our Groups. We have something for everyone, and you can add a comment in the Forum to make contact with the members of your group.

Popular Posts - these posts are the most read over the last two weeks on our website. 

Pet scans: what, when, how and why


What they are
I know a PET stands for positron emission tomography. A PET scan is given post treatment to some patients but in my 11 years of experiencing this disease on and off, those three letters, PET, have never entered my realm of treatment and testing. I could…

Read more…


Our stories are precious: Friendly Friday

I've always enjoyed reading the stories of other patients. There's the basic human interest - it's pretty dramatic having treatment for a nasty cancer like this - and there are the aha moments when you realise the writer has felt exactly what you felt. You feel connected; less alone. The stories are informative -…

Read more…

A major challenge in fighting cancer is the number of types of the disease which all respond differently.

Lead story this week looks at progress being made in improving immunotherapy treatment – it has been working with melanoma and breast cancer but can, hopefully, apply to head and neck…

Read more…


Ka kite ano,

Diana Ayling

Chair Head and Neck Cancer Survivors' Support Network

Read more…

We are aware that many of our folk are having problems with their service providers. We do not have access to the Patient Feedback data collected by the District Health Boards.  So we are going to collect our own information so that we know how well the Head and Neck Cancer service is doing in New Zealand.

We need you to help us by regularly providing feedback on our Open Survey - Patient+ Feedback. We are really keen to hear from your family/whanau and carers. They may see things a little bit differently from you.

You can take our survey any time, and as many times as you like. We will be reporting on the outcomes of your feedback each month in our Network News.

Over time we will be tracking trends in the service provided to patients, and we hope this will ensure we are advocating for the right changes at the right time. 

So please access the link below and share your thoughts. 



Read more…

Connect with Whats App


We are bringing a new channel of communication to the Head and Neck Cancer Survivors' Support Network. We know there are some folk who do not use Facebook,https://www.facebook.com/groups/HNCSupport.Aotearoa/ and they are unlikely to become members of our website. http://headandneck.org.nz/. So we are starting to use Whats App, a phone not Internet based tool, to share information and connect people. 

Our Whats App is HeadNeckNZ. You are all welcome to join. We will share our information and we will chat to the members encouraging a positive, uplifting environment. Text HeadNeckNZ to +64 21 2131078 to get started.

Whats App is very easy to use. All you need is a smart phone, and the app. You can download the app from Appstore (iPhones) or Playstore (Androids).

To help folk get started with have a video to watch and an information library to answer all those pesky questions we all have when using a new technology.

All the information you need to get started https://www.digitalunite.com/guides/smartphones/how-use-whatsapp-on-your-smartphone

Read more…

A major challenge in fighting cancer is the number of types of the disease which all respond differently.

Lead story this week looks at progress being made in improving immunotherapy treatment – it has been working with melanoma and breast cancer but can, hopefully, apply to head and neck cancers as well.

The second story  essentially supports all those warnings about cigarettes and alcohol consumption

#  Ironing boards actually are surf boards that gave up from their dreams and had to get a boring job.
# When a dog sees a police dog, does it think, "be cool.. cop."
# "As seen on TV" Really isnt something to brag about


Injectable goo could bring drugs to cancerous tumors
(U.S.) An injectable gel-like scaffold can hold combination chemo-immunotherapeutic drugs and deliver them locally and sequentially to tumors.
The results in animal models so far suggest this approach could eventually ramp up therapeutic benefits for patients bearing tumors or after removal of the primary tumors.

The research focused on two specific types of melanoma and breast cancer, but this approach could work in other tissue types. Also, the research showed that this localized delivery of combination therapy significantly inhibited the recurrence of cancer after the primary tumor was surgically removed

“We’ve created a simple method to use chemotherapy while leveraging the biology of the tumor and our natural defense against foreign invaders to beat back tumor development with limited side effects,” says senior author Zhen Gu, associate professor in the joint University of North Carolina/North Carolina State University biomedical engineering department.

“We have a lot more work to do before human clinical trials, but we think this approach holds great promise.”

How immunotherapy works
In our bodies right now, there are normal cells mutating from their typical form and function. Thankfully, as our immune system lets normal cells move along and perform important biological functions, mutated cells are recognized and destroyed. Unfortunately, though, these cells can hijack the system designed to dispatch them.

If that happens, these cancerous cells become virtually undetectable, free to multiply unabated, and able to form tumors.

Immunotherapy tries to reset our immune response to recognize these hijacker cancer cells. For example, immune checkpoint blockade (ICB) therapies target the cellular pathway that programs cell death; the therapies trigger the pathway so cancer cells are killed.

This kind of therapy has shown incredible potential to treat various forms of cancer, such as melanoma, kidney cancer, head and neck cancer, bladder cancer, and non-small cell lung cancer.

But there can be troublesome side effects, including kick-starting the immune system to attack healthy tissue. And often this immunotherapy does not work because many tumors lack the specific characteristics needed in order for the immunotherapy to recognize and attack the cancer cells as enemies. These sorts of tumors are called low-immunogenic tumors.

Full story:

Are Oral Microbes Linked to Head and Neck Squamous Cell Cancer Risk?
(U.S.) The human body is colonized by trillions of microbes (bacteria, fungi, and viruses) living on and in the body. These microbes outnumber human cells by about ten to one. They are mostly found in the gut, particularly the large intestine, but they are also found in the mouth.

All the genetic material contained in these microbes is called the “microbiome” and this varies between individuals. It is beginning to be understood that the pattern of the microbiome is important for health, in particular for immunity and nutrition. There has been much research looking at the associations between microbiome patterns and the risk of particular cancers.

Every year, there are over half a million new cases of head and neck cancers (mouth and throat) worldwide. About 85% of these are squamous cell cancers, meaning that they develop in the lining cells of the mouth and throat. Researchers in the US performed a large study looking at the association between oral microbiome patterns and the risk of head and neck squamous cell cancer.

This study included 129 cases of head and neck squamous cell cancer diagnosed during two large cancer screening projects – the American Cancer Society Cancer Prevention Study (CPS-II) and the Prostate, Lung, Colorectal and Ovarian Cancer Screening Trial (PLCO) – and 254 matched control subjects from the screening studies. All subjects were cancer-free at the start of the screening period.

The CPS-II study included 184,000 participants aged between 50-74 years who completed a baseline diet and lifestyle questionnaire in 1992. The CPS-II study group sent follow up questionnaires every alternate year to update this information and to ask about any incident cancers. They -took oral wash samples from 70,000 participants in 2001-2002. The PLCO study was a large randomized study looking at the effects of screening on cancer-related mortality. This study recruited participants aged between 55-74 years between 1993 and 2001 and followed them for cancer incidence.

The participants were randomized either to receive cancer screening or to the control arm (no screening). Oral wash samples were collected from those in the control arm (52,000 subjects). The follow-up included annual questionnaires to ask about incident cancers.

They found that the patients with head and neck cancer were more often smokers and had a greater consumption of alcohol than the control group. The overall microbiome pattern was not found to be associated with risk of head and neck squamous cell cancer. However, a greater presence of two bacteria –Corynebacterium and Kingella – was associated with a decreased risk of head and neck squamous cell cancer.

These associations were particularly strong in those with a history of smoking.  Corynebacterium and Kingella are known to break down the carcinogens found in cigarette smoke, and this may be an explanation for their protective effect.

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