Support Network Newsletter Volume1, No. 6 May 5, 2016
From the Chair
Over the last few months the committee were busy on your behalf advocating for head and neck cancer people. I participated in the DHS’s Patient Experience week. It was a day of learning from the experts how best to advocate for the best possible health services. Maureen and I shared our views and ideas on the proposed new cancer care facility to be built at Auckland City Hospital. A number of us attended the public lecture, The Male Story HPV16. Kevin, Maureen and I met with the Cancer Society CEO John Loof. Maureen and I met with Oral Health Service representative, Oral Medicine Specialist, Dr Kim Gear. Finally I spoke to a new group of oncology nurses, about the head and neck cancer experience.
Our incorporation processes are progressing. Our next challenge is to raise some funds, and to that end we are looking for some good ideas.
This month’s infographic on page 5, demonstrates that there are many people in the regions who need support, education and advocacy. From our strategic planning processes it is clear there is a strong need for a social media presence to connect and engage with the many people, their families and carers facing head and neck cancer. To that end, we are looking at a social media policy for the Network. One of the areas we think would bring support and education to head and neck cancer people throughout New Zealand is with a Facebook group. If you have any thoughts on this we would love to hear them.
We are seeking some feedback from you to inform our strategic plan. The plan will be based around our goals of support, education, advocacy, and raising awareness. We would like to know how we could practically bring those goals to life in a way that works for you. If you want to contribute then go to our quick poll, and have your say. Click this link or type the link into your browser to share your views. http://tinyurl.com/jf5ddbh
Diana Ayling
Early psychological support has benefits
Psychological interventions provided soon after diagnosis of head and neck cancer have benefits for patients, their families and carers. A recent paper by PhD student Amy Richardson suggests that psychological interventions such as face to face sessions, presenting honest and factual information about the cancer, and support with coping strategies, enables patients to manage better. Some of our people have contributed the research. To read the full paper click the link below.
We get closer to incorporation
Today we took one big step closer to becoming an incorporated society. We gathered the 15 signatures needed to make the application to the Companies Office.Patricia Finlayson, who is a fellow of the Institute of Governors gave us a brief talk on how incorporated societies are best run. She recommended a formal structure, with neat and tidy processes, and good participation and democracy. She warned about fraudsters who rip off charities. People who run charities are vulnerable because they don’t expect others to have evil intent.
Pat said that the committee needed a mixture of people and needed to build capability constantly. A risk is that interest will wane and people will move on so the committee will need refreshing over time.
A big thank you to Pat for witnessing our signatures.
Cancer Connect can work for us
Second speaker Kylie Moore flew up from Christchurch to talk about Cancer Connect, a service run for the whole of New Zealand from the Canterbury/Westland branch of the Cancer society.
What is Cancer Connect? It is a free, confidential peer support service usually conducted over the phone. People who have been diagnosed with a primary cancer are matched up with a trained volunteer who had a similar diagnosis and treatment to them. Sometimes the match can be broader and include life factors like work, children, relationships. The connection can take place years after diagnosis.
Kylie said the service started in Australia and in fact they still work with our Australian friends. If a peer support person cannot be found in New Zealand, they look to Australia for one. The volunteers (peer supporters) call the people needing support.
It is widely recognised that peer support is of great benefit to cancer patients, she said. “Social support can buffer the impact of a cancer diagnosis, reducing emotional distress.”
What qualities are needed in volunteers?
- They need to be able to work within guidelines
- They need to be well adjusted to their personal experience of cancer and about two years post treatment.
- They need to commit for two years.
Cancer Connect has 61 active volunteers in New Zealand. There are six oral cancer and 19 breast cancer supporters. There are 600 in Australia.
Two-day training is given in Christchurch, Wellington or Auckland.
Pros
- Camaraderie
- More comfortable talking to a non-health professional
- Can share coping strategies
- Provide hope
Cons
- Cannot give medical advice
- Everybody is different so no two experiences will be the same
Referrals to Cancer Connect are increasing. There were 175 referrals in 2015. Only 35 of these were from Auckland and 47 from Christchurch. With none in the Waikato/BOP region it seems that the message is not getting out equally throughout the country.
On the new Cancer Society web page, you can look for Cancer Connect under the heading: How Can We Help? Health professionals can go in and ask for support for their patients.
Kylie says that if they can’t find you a peer, they can support you through the Cancer Society.
There is a new Ministry of Health initiative, she says, that will provide clinical psychologists and oncology social workers to offer counselling to patients going through the journey. It has been put in place in Christchurch but not in Auckland yet.
Kylie was surprised that we don’t seem to have a Cancer Nurse Coordinator who operates “on top of” the specialist nurses.
We are very grateful to Kylie for coming up from Christchurch to see us. If you are interested in Cancer Connect, either to volunteer or gain support, ring 0800 226 237.
A patient story with a difference
Elizabeth Garcia Sikon is a head and neck cancer survivor living in Texas, USA. She is part of the Oral Cancer Foundation family and has given us permission to use her story here. Her story illustrates three things: the frustration patients feel when seeking a diagnosis, the shock of treatment and the lingering after effects. She and her husband organise a walk in San Antonio every year to raise money for the Oral Cancer Foundation, an organisation which has contributed to cutting edge medical research in recent years. This is the first part of Elizabeth’s story. Next month we will publish the second part in which she talks about the long term side effects.
3/27/09 To give you some insight on what has been going on, about two years ago I got a bad ear infection and got treated for it, but my right ear just never felt the same. I went on later to Urgent Care thinking I had another ear infection, but they said it was ear wax build up and proceeded to irrigate it. Whenever I would get a "flare up" I would just treat it at home with an ear wax removal kit. It wasn't until I was pregnant with Abigail that I developed a major ear problem, and felt like I was starting to come down with a cold or something as my throat got sore. With insurance issues, they wouldn't take a referral from my OB and my PCP wouldn't give me the referral to see an ENT doctor because I was six months pregnant, so I just left it alone and it seemed to get better over time.
After having my 3rd child, I scheduled myself for a regular annual checkup with my PCP. I told him about my constant earache and told him that I recently noticed that the right side of my jaw wouldn't open as wide as my left (thinking I had TMJ). He checked me out and noticed a mass on the right side of my tonsil. He tried to treat it with antibiotics thinking it was tonsillitis. When I went back for a checkup he told me what he thought it was either Lymphoma or Squamous Cell Carcinoma, essentially Tonsil Cancer. I was in shock and disbelief. As many of you know I care for cancer patients for a living, no way could I have it! So I told no one for a few weeks then I started getting some nerve pain on the right side of my tongue. I quickly went to see the ENT specialist my PCP recommended. Meanwhile I researched more about the two cancers and knew I fit the clinical description. 
I went to see the ENT and he was sure I was worried for nothing. He looked in my mouth and saw the mass and quickly started to do some tests. He was upfront and honest with me and told me I had cancer but without the biopsy results he wasn't sure which one.
I later went on to find out that I was diagnosed with a Stage 4 High Grade Mucoepidermoid Carcinoma of the Oropharynx. I was given a 19% chance of a 10 year survival and went through 9 weeks of induction chemo, a 14hr surgery to reconstruct my jawbone with bone and tissue from my leg, and a neck dissection where 50 lymph nodes were removed. I had a tracheotomy put in my neck to breathe, a feeding tube in my stomach to eat and a long term intravenous line to supply medications that I needed.
I tell you all this because awareness for Oral Cancer is crucial! The number of people being diagnosed is increasing and being found in younger than expected populations. Research suggests that the HPV is the primary cause of this as opposed to the more common factors such as tobacco and alcohol. My cancer could have been caught earlier if the medical community would have not automatically dismissed me because of my age. I had been in the care of multiple people including my dentist.
Elizabeth Garcia Sikon
Auckland Research Centre makes "laser guided missile"
On 9 April I attended the Auckland Cancer Society Research Centre’s 60th Anniversary Open Day. Thanks to Kenny, who alerted me to this event, I learnt a lot about cancer research and even saw some head and neck cancer cells through a microscope. The Centre is located in the Medical School building opposite Auckland City Hospital.
I attended only the morning sessions, the highlight of which were the talks given on the research centre’s immunotherapy drug, Tarloxitinib, which is now entering phase 2 clinical trials. The process to reach phase 2 has taken ten years. The drug looks promising and will possibly add to the arsenal of immunotherapy drugs being rolled out now like Keytruda and Opdivo. 
The drug is named Tarloxitinib because it targets the low oxygen regions of solid tumours like those of the head and neck. These “hypoxic” areas are the ones that send out the strongest signals to evade the immune system and make the cancer grow.
Tarloxitinib is a “prodrug”. This is a drug which is not activated until it reaches its destination in the body. Researchers say the contrast between Tarloxitinib and chemo is like “the difference between using a laser-guided missile and carpet bombing.”
I also learnt that the Cancer Society of Auckland/Northland has contributed 21 million dollars to the Research Centre over the last decade, some of the funding coming from Daffodil Days. In spite of the Cancer Society’s huge contribution, the Centre struggles for funding with senior scientists spending a lot of their time applying for grants.
PS It is interesting that Pharmac is now intending to fund Keytruda and Opdivo for advanced melanoma patients. Overseas research shows that both drugs, especially Opdivo, might be useful against head and neck cancer. Maureen Jansen
What the data says about us
What the data says about us
To look at this diagram https://infograph.venngage.com/p/94873/new-cancer-registrations-by-regions-new-zealand
Contact us
Diana: dianaayling@outlook.com
Kevin: kbowers@xtra.co.nz
Temporary website: http://headandnecknetwork.blogspot.co.nz/
Our meeting place is Domain Lodge, 1 Boyle Crescent, Grafton, Auckland,09 308 0161
Next Auckland meeting
9.30 to 11.30, 2 June, 2016 at Domain Lodge
Speakers:
Anna Griffiths, Cancer Society. “Ten things I learnt as a health psychologist”.
Dr Francis Hunter, University of Auckland, Cancer Research. “The Latest in Head and Neck Cancer Research”.
Sorry about the confusion over starting time this month.
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