Head and Neck Network's Posts (276)

Head and neck cancer news is very quiet this week. We bring you three stories to keep you thinking....

The 3 Essential Strategies To Come Back To Life After Cancer

The reality of life after cancer can be one of overwhelm and anger, of feeling lost and alone with no idea how to pick yourself back up and live the life you survived for.
 

Half Of Cancer Patients Struggle To Seek Help Because They Want To 'Stay Strong' For Family

Nearly half (47%) of people diagnosed with cancer said they found it hard to ask for help from friends, family and colleagues after they were diagnosed, according to research from Race for Life.

Four in 10 (43%) of those admitted they feared being pitied and by three in 10 (30%) name pressure to “stay strong” around family and friends as the reason they kept quiet. Read more...

Head and neck cancer: Could oral sex raise your risk?

New research has discovered that smoking and oral sex are tied to an increased risk of developing HPV-related oropharyngeal cancer, which is a form of head and neck cancer activated by exposure to the human papillomavirus. Read more....

Read more…

Kia ora tatou,

Network News

The Network has a new Board for the 2019/20 year. Diana Ayling (Chair), Heather Anderson (Secretary), and Board Members, Monica Koia, Brian Sheppard, and Gaynor Anderson. We elected to change the name of the “Committee” to “Board” and to allow online voting for any meeting of members. You can access the Minutes of the AGM here.

The Board is committed to two projects in the year ahead. We will be focusing on bringing the head and neck cancer community in New Zealand to have “One Voice” and to “Build our Community” by connecting people to the Network and with each other.

There are new developments with our website, the creation of a new form of Facebook group, and the continuing development of face to face support through support groups. We will keep you up to date through our Network News.

Members  Support

Last year 66 people joined the Head and Neck Cancer Support Network website. The Network community of 214 people all with shared interest in head and neck cancer. However, this is a small number of people affected by head and neck cancer in New Zealand, and we are striving to grow the community this year. Please encourage people you meet to sign up and join us. Family and friends are most welcome. 

Welcome to new members. Monica Ngaire Koia (Board Member)Adrianna PetermanPhilip HopeLana AndersonCarlos, and Jenn Lourie.

Website Support

Our website continues to serve people affected by head and neck cancer. The website had 34,000 hits in the last year. We are working to refresh the site, and to ensure it is usable and relevant. If you would like to make suggestions on the redevelopment you can do so here….

National Connections

 

The last week was very busy for many cancer organisations, as Patient Voice Aotearoa asked New Zealanders to sign petitions to Parliament asking for funding of life saving medicines. As an active member of Patient Voice Aotearoa we will continue to support this campaign.

http://headandneck.org.nz/news/right-to-live-join-hands-change-lives

http://headandneck.org.nz/news/access-to-life-saving-medicines-the-story-so-far

 

 

 

Regional Connections

We are pleased to be working with the Auckland Health Foundation to refurbish the whanau room in Ward 74 of Auckland City Hospital. The hospital is a hub for patients from the greater Auckland and Northland area. We want carers, family/whanau and friends to feel comfortable while supporting those affected by head and neck cancer. If you can donate please do...make sure you follow the link to Ward 74. https://aucklandhealthfoundation.org.nz/get-involved/help-us-refurbish-ward-74s-whanau-room/?fbclid=IwAR1sgWzra9JH6zQMcEInktOecT8xp3K3Q2y7GN-RYtlcltlOnQbu746Wq44


International Connections

For World Head and Neck Cancer Day 2019 we are joining with Australia’s Beyond Five to raise funds for the New zealand’s Head and Neck Cancer Support Network through Soup for the Soul. If you would like to host an event please register here and we will send you the support pack. https://forms.gle/TDNuYQkHwiJx84xL7

Online Support (Apps, websites, resources)

Live Better With 

A highly recommended set of resources

Live Better With Cancer makes everyday living a little bit better for the millions of people living with cancer all over the world.

Together with patients, their families, nurses, doctors and experts, they have handpicked 1000's products and written over 250 practical articles, guides and even a podcast to help ease symptoms and side effects, and improve the quality of day-to-day life.

They have built a thriving online community of over 70,000 people talking about cancer and supporting each other. Talking to and hearing from the community is helping build Live Better With into the most useful practical destination for people living with cancer - all of products and information are guided by community recommendations.

Uniquely, Live Better group all the products by how someone might be feeling (e.g., 'Feeling sick' or having 'Difficulty Sleeping'), so it’s very easy to discover all the relevant and helpful things that have worked for others with the same need as you.

https://cancer.livebetterwith.com/blogs/cancer/tagged/category_expert-guides

Save The Date!

10 June 2019 Auckland Support Group meeting. Domain Lodge, Grafton at 11am. Speaker Jacqui Allen - Voice and Swallowing expert.

Looking for answers or support?

The Cancer Society knows that going through cancer is tough and can raise many questions. They want you to know that they are here for you. From help with getting to your medical appointments or understanding your treatment options, to offering practical support, they can help.

The Cancer Society can help you find answers to questions about your treatment and its effects. There are pages of cancer information online and in booklets, and they are always available for emotional support when things get tough.

For answers, support or just a chat, call us free on 0800 CANCER (226 237) Monday to Friday, 8.30am–5pm.

Thank You to our Corporate and Community Partners

International Groups

Online Support Community - Head and Neck Cancer Alliance

SPOHNC | Support For People with Oral, Head and Neck Cancer

HNC Support International: Head and Neck Cancer Support

Head and Neck Cancer | Cancer Support Community

Throat Cancer Support and Resources - Throat Cancer Foundation

Head and Neck Cancer Alliance Support Group & Community - Inspire

The Oral Cancer Support Forum

Head and Neck Cancer Survivors

Be sure to add our email address to your address book or safe senders list so our emails get to your inbox.

Read more…

This week our Weekly Wednesday includes one man's struggles with the DHB system, new research indicates that HBO has limited benefits, researchers at MD Anderson Cancer Centre find some persistent aspects to HPV following treament and Lynn Aspey, explores "the new normal". Enjoy!

 

Reasons for a hospital pass

... to larger tertiary boards like Waikato or Auckland, and some covered by board ... Specialists employed or directly contracted by Taranaki DHB include ... "This is business as usual for Taranaki DHB…and most DHBs across New ...
 

Tackling side effects in head and neck cancer treatment – the end of the road for hyperbaric oxygen?

Some side effects appear years after cancer treatment. That's the case for one side effect of radiotherapy for head and neck cancer, called ...
 
Oral HPV DNA Persistence After Head and Neck Cancer Treatment Linked to Disease Progression
NEW YORK (GenomeWeb) – Persistent traces of human papilloma virus DNA after treatment for HPV-positive head and neck cancer is linked to an ...

 

Cancer Survivorship and the Mysterious 'New Normal'

Most people have heard the term "new normal" for individuals living, surviving and struggling with cancer. What actually does that mean? I can only 
Read more…
Friday was an easier start as we knew the format and layout ….. old hands we greeted each other like long lost family – we are united now. in this together …. Mostly health professionals but some big absences noted.
 
The first session was Rami Rahal from CPAC (Canadian Partnership Against Cancer, Canada). He spoke on improving outcomes through evidence-based policy and performance measurements. – OMG – fantastic work. He admits that currently we do better in involving our indigenous people which they do not. 
 
Dr John McMenamin (GP and Primary Care Adviser) followed with a talk on “Realising the potential in primary care.”
 
Dr Fatima Cardoso spoke to the Conference about the work that ESMO is doing and how it is useful for all cancers. It is currently use for advanced breast cancer.
 
Our first session after morning tea was an interesting talk on Palliative and Supportive Care. Dr Jonathan Adler from Capital and Coast DHB spoke. He explained how palliative plan should come in much earlier than it was doing. He understood that a talk of palliative care was really disturbing for patients. That Supportive Care model should be used more often. Generally, in New Zealand we do this well. It is especially difficult for people in the regions.
 
Dr Shaun Costello of Southern Cancer Network spoke on Radiation Oncology in NZ. He explained the variations in care. He indicated some of the ideas that will come about in the future.
 
Dr Chris Jackson of Cancer Society spoke on the changing face and changing pace of cancer care in the clinic.
 
Drs Jane O’Hallahan (National Screening Unit MoH)and Caroline Shaw (Public Health, University of Otago, Wellington) talked about Screening.
 
After lunch we had Rapid Fire Presentations from Dr Sandar Tin Tin (University of Auckland. His topic was Genotype testing and targeted therapy in lung cancer.
 
Dr Scott McFarlane (National Child Cancer Network & Starship Childrens Hospital). He spoke about shared care is fair care. He explained that our national model for child cancer services delivers equitable and high quality care. It is his belief that the model of hubs of excellence works and is proven.
 
Finally, Simon Pointer (Southern Cancer Network). He spoke about Faster cancer treatment . The pathway entry, ED presentations and routes to diagnosis.

Thank you Heather for such a great summary.

 
Read more…
Tena koutou.
 
Below are seven petitions that are being presented to Parliament next Tuesday (7 May) for 26 life extending or life improving drugs to be funded by PHARMAC, across six diseases (Lung Cancer, Breast Cancer, Ovarian Cancer, Chronic Lymphocytic Leukaemia, Multiple Myeloma and Pompe Disease).  Some of these drugs have been funded for many countries for many years.  Some of the petitions close within three days.  
 
Please take the time to sign each one (they only take twenty seconds each) and to pass the petitions on to your networks.  
 
Below the petitions is a notice regarding the presentation of the petitions under the banner of "Right to Live".  If you are in Wellington on Tuesday, please feel free to join us.
 
Thank you in advance
 
Malcolm Mulholland 
 
 
 
 
 
 
 
 
Read more…

This week our Network News covers a great new podcast from our friends in Australia, new developments in immunotherapy, Ellen Goodman gives you the maths on starting the conversation about End of Life Care, and finally some data on the rise of head and neck cancers. 

The Thing About Cancer

Listen to the welcome episode to find out what The Thing About Cancer podcast series is all about – and how it can help after a cancer diagnosis.

Get information and insights as host Julie McCrossin chats to experts and people affected by cancer.

Together we’ll explore topics ranging from coping with the emotional impact and making decisions about treatment, to managing side effects like nausea and fatigue and understanding how cancer might affect your sex life. We also talk about how to explain cancer to kids and how to support someone with cancer, as well as how all this can affect carers.

Produced by Cancer Council NSW, The Thing About Cancer is your companion through all things cancer.

Listen to the Welcome episode now, or find more episodes here.


Read more at https://www.cancercouncil.com.au/podcasts/welcome-episode/#8sJGAksxKb2KvL16.99

Novel combinations can capitalize on immunogenicity of head and neck cancer

NEW YORK — Nabil F. Saba, MD, FACP, professor of hematology/medical oncology and otolaryngology and director of the head and neck oncology program at Winship Cancer Institute at Emory University, spoke at HemOnc Today New York about combination approaches for head and neck squamous cell carcinoma in the immunotherapy era.

“Head and neck cancer ... is very immunogenic,” Saba told HemOnc Today. “The amount of infiltrative immune cells in head and neck tumors surpasses those of many other tumors, and ... data show reversal of immune suppression makes a big difference in the effectiveness of immunotherapy in this disease.”

Saba discussed the potential role of immunotherapy as part of combination therapy with radiation, chemotherapy or targeted agents.

https://www.healio.com/hematology-oncology/head-neck-cancer/news/online/%7B4b5b5c2e-1ff3-41a6-8e8c-459137732e56%7D/video-novel-combinations-can-capitalize-on-immunogenicity-of-head-and-neck-cancer

 

 

Start the Conversation About - End of Life Care

In a national survey conducted by The Conversation Project, we discovered some interesting facts that reinforce the importance of encouraging everyone, everywhere to have the conversation. https://theconversationproject.org/

 

Head and neck cancer on the rise

LANDSTUHL REGIONAL MEDICAL CENTER, Germany -- In honor of April's National Head and Neck Cancer Awareness Month, medical providers from the Ear, Nose and Throat Clinic, Oral Surgery Clinic and Speech-Language Pathology Department at Landstuhl Regional Medical Center held a head and neck cancer screening event at both the hospital and the Ramstein Exchange Apr. 17 where over 130 people from the community were evaluated. 

During the five minute screenings, patients were examined for signs and symptoms of head and neck cancers and were provided education on ways to detect and prevent them. https://www.army.mil/article/220702/head_and_neck_cancer_on_the_rise

For more information go to https://www.cdc.gov/cancer/headneck/

Read more…

This week our Network News is all about our Network. The AGM is to be held Monday 6 May at 6pm at Domain Lodge, Grafton, Auckland. Please check the details on our website. Patients, friends and family are most welcome to attend. It is an opportunity for members and prospective members to get together to discuss the performance of the Network over the year, and to plan for the year ahead. 

What is you cannot attend in person?

You can attend our meeting by accessing it through Zoom technology online. Zoom is very easy to use provided you have a computer with a camera and microphone. You will be prompted to give your permission for Zoom to use your camera and microphone, and you will have to agree for the software to work. All you need to do is click this link and follow the instructions.  https://zoom.us/j/413785284

You will need to register to attend the meeting. When you register we will send you a link to register as a member, and be entitled to vote at the meeting.  https://zoom.us/meeting/register/c51e02e387bb7d177c24e00bf0acd2b8

What happens at the AGM?

The Agenda includes two proposals for changes to the Network Constitution. The first proposal is to allow online voting at any meeting. The Committee think this is important to encourage participation in the Network. We want members to have their say on matters of importance. The second proposal is to change the word “Committee” to “Board”. The current Committee work as a Board representing the interests of members. We work on strategic matters and consider the word “Board” is more reflective of what we do.

The Minutes record the 2018 Annual General Meeting. If you attended last year’s AGM, please read and vote to approve as a true and correct record. 

What does the Network do?

The Annual Report summarised the outcomes of the Network over the last year. The Chair’s Report is below. To read the full report click the link.

Message from the Chair

Kia ora tatou,

The Head and Neck Cancer Support Network is now three years old. Since 2016, the Network connected 230 New Zealanders in the head and neck cancer (HNC) community. We have provided education and support for patients, family/whanau, friends and health professionals. As a Network we have advocated for better treatment, care and support for those affected by HNC.  Over the last year the Network partnered with a number of organisations to ensure the needs of head and neckers are known and understood.

This year was challenging for the Network. Disagreements at governance level over the direction of the Network let to a number of resignations. However, the Network has recovered well, is stable and progressing.

I wish to thank our Board for their work. The Board brings considerable knowledge and expertise to their roles. This year we have committed to two projects. “One Voice” and “Building our Community”. The aim of these projects is to build a strong Network of patients, friends, family and health professionals who can channel their voices through the Network.

This year we had a number of changes to the Board. We farewelled Maureen Jansen, Tammy von Keisenberg, Narelle Hoarton, Cosette Calder, Toni Davis, Olwen Williams, and Liz Gray. Heather Anderson (Timaru) and myself, welcomed new Board Members, Brian Sheppard (Wellington) and Gaynor Anderson (Currently Australia based). We thank our outgoing members for their contribution and support during our first two years.

Once again, it is a privilege and an honour to Chair the Network. I thank you for your extraordinary support this year. We have had our challenges and emerged stronger and more focused. I, and the Board will continue to work hard for New Zealanders affected by head and neck cancer.

Ngā mihi nui,

Diana Ayling

Chair

How can I get involved?

  • A link to a form to register your membership, and to vote on resolutions proposed for the AGM (online voting was approved at last year's AGM).

    It is important that you provided a residential address. This is a requirement of the Incorporated Societies Act 1908. 

How can I share my views?

  • A link to a Members Survey where you can give your feedback on the performance of the Network over the year. We are very keen to hear your thoughts on the Network performance over the last year. We are providing an opportunity for members to express their wishes for the year ahead. 

We encourage you and your family to register, to vote and give feedback as members of the Network. We look forward to you joining us and participating in the management of the Network. 

me te whakawhetai,

Diana Ayling

Chair

 

--

Read more…

This week we share with you some commonly head myths about Head and Neck Cancers, a touching story of a rugby player determined to make the best of his end of days, and we look at why there are so few women as surgeons. 

Commonly Held Myths of Head and Neck Cancers

There are many myths associated with head and neck cancer such as how environmental influences can affect our risk, or what role gender plays. Here, Dr Fauzia Riaz helps set the record straight to provide the real facts behind the myths. For the latest research on head and neck cancer at BMC, please read our ‘Oral, Head and Neck Cancer Awareness Month: Research Highlights’ blog. Then, when you're ready to test your knowledge, take our dedicated 2019 quiz on this topic. Read more…

 

 

'Too many people dying' - rugby player with terminal illness puts helping create national cancer plan on bucket list

A Southland man with terminal cancer has one large item left on his bucket list - to see a national cancer plan launched so the lives of others can be saved.

Blair Vining, a life member of the Midlands Rugby Club in Winton, created a bucket list almost immediately after he was diagnosed with terminal cancer in October, TVNZ1's Seven Sharp reports

The first item was a game of rugby with his mates which was held early this year, and drew a huge turnout of spectators. Read more…

 

 

 

Gender imbalance in surgery: we must focus on the future

Gender equality tackles the deeply held prejudice that men are somehow better or more apt than women to exercise certain faculties or fulfil certain roles. If crude testosterone was once an advantage to medieval or early battlefield surgeons, the advent of peace, prosperity, anaesthetics, haemostasis, visual enhancement, and micro-surgical techniques, among others, now allows a subtle approach to the most complicated anatomical situations. Surgery has changed and it continues to change; the genderless “it” of the robot placed between patient and operator will soon render gender-bias in surgery a laughable concept. Read more...

Read more…

From our representative Heather Anderson.

The Thursday afternoon sessions started with Prof David Currow (Cancer Institute NSW, Australia) talking about prioritisation experiences in cancer control in Australia – in particular hubs of excellence. See his presentation here.

Hon Steve Maharey, the new Chair of PHARMAC, talked on the processes of PHARMAC – my personal take was that he used his “newness” to avoid the hard questions.  There was an item of interest that he talked on which was a new drug would be requested and would be investigated and sometimes “parked” however it then meant that it stayed “on the list” so when anyone looked at “the list” there were all these drugs which in fact were clogging up the system.  

He talked about one of his first tasks was taking the “parked drugs” and putting them in a separate list so that it was clear what was being looked at currently, what had been investigated but was put to one side as it was not currently to be approved but may be needed in the future and those which were not going to be approved at all.  He also talked about “considering” the question of whether New Zealand using tests undertaken by others – in particular Australia, UK, or Canada.

Prof Ian Bissett (University of Auckland) talked of improving surgical quality in New Zealand – basically hubs of excellence with using technology for consultations to outlying areas.  You can see his presentation here...

Dr Richard Sullivan (NZ) (Oncologist Auckland DHB) – also known now as the Feathered Dr Richard Sullivan because of his flamboyant suit and to differentiate him for Prof Richard Sullivan of UK.  He spoke on Oncology service innovations and key challenges including bringing technology into treatment to allow patients to get best treatment while remaining closer to home. See Richard's presentation here.

This was followed by a “debate” “That precision medicine is the future of cancer care.” For – Dr Ben Lawrence (University of Auckland).  Against – Prof Richard Sullivan (Kings College London, UK). As to debate it was very much more humorous and very light hearted. At one point being a discussion on how good looking they were. See Richard's presenation here.

Read more…

Imaging Tool Helps Doctors Predict How Cancer Will Respond to Radiation

Clinicians who prescribe radiation to treat cancer face a fundamental difficulty in determining what dose to apply: They don’t know how individual tumors will respond to the therapy.

Now, a project by researchers at the University of Arkansas and Johns Hopkins University may promise a way to detect the difference between tumors in the lung and the head and neck that react positively to the therapy, by shrinking, and those that resist it. The researchers were able to detect resistant tumors in mice, though only clinical trials can confirm whether the same approach would work in people. Read more...

Chinese AI helps target head and neck tumors

GUANGZHOU, April 4 (Xinhua) -- Chinese researchers have developed an artificial intelligence (AI) medical tool that can help doctors target head and neck tumor cells faster and more accurately, according to an article published in the international journal Radiology.

Nasopharyngeal carcinoma is cancer that starts in the nasopharynx, which is the upper part of the throat behind the nose. Due to the organ structure and its location in the human body, surgery is always difficult, and radiation therapy is the most common form of treatment. Read more...

Rakuten's CEO Is Developing a Brilliant New Cancer Treatment: Light

 

 

Some types of innovation are fueled by curiosity. Others stem from the profit motive. (In many cases, it’s a bit of both). For Rakuten CEO Mickey Mikitani, the quest for groundbreaking science was born of heartbreak.

Mikitani’s father’s pancreatic cancer diagnosis (and eventual death) spurred the serial entrepreneur to form a biotechnology outfit centered on “photoimmunotherapy.” In simpler terms, Rakuten Aspyrian is attempting to treat cancer with literal light.

That journey began on the heels of the elder Mikitani’s diagnosis. “One of my friends called me, who was also a friend of my father’s… and said, by the way, my cousin is doing this new project, trying to cure cancer with light,” Mikitani explained during a one-on-one interview at the Fortune Brainstorm Health conference on Wednesday. “I was like, this must be a joke. But I was desperate.” Read more...

Poison drummer Rikki Rockett urging people to 'Open Up and Say Ahh!'

The Head and Neck Cancer Alliance (HNCA) is hosting its 21st annual Oral, Head and Neck Cancer Awareness Week (OHANCAW), April 7th-14th. Poison drummer Rikki Rockett joins HNCA as its official spokesperson, urging individuals, both nationally and internationally, to get a free screening during OHANCAW. Hundreds of sites throughout the United States and internationally will offer free oral, head and neck cancer screenings during OHANCAW. Rockett, founder and drummer of the rock band Poison, was diagnosed with HPV-attributed throat cancer in 2015 and is now in remission after undergoing radiation and immunotherapy. Read more...


[Read More at themusicuniverse.com/poison-drummer-rikki-rockett-urging-people-open-up-say-ahh/ © The Music Universe. All Rights Reserved.]

Read more…

Kia ora tatou,

Stand with our brothers and sisters affected by lung cancer. More New Zealand die of lung cancer than any other cancer. Sufferers are often stigmatised by smoking, when most have never smoked. The Lung Cancer Foundation are looking for support for their petition to have lung cancer declared a health priorty and to approve additional budget for Pharmac to fund lung cancer medications, including Keytruda, Alectinib, Osimertinib and Crizotinib, for all Kiwis with advanced lung cancer, irrespective of socio-economic status.

https://www.parliament.nz/en/pb/petitions/document/PET_86322/petition-of-philip-hope-for-lung-foundation-new-zealand?fbclid=IwAR0Er6gNod70xvpB1kq3bBVa0LExrfq8GSWo7Gv3KvV-Jr9vwb8mL-NsrDs

Notice of Annual General Meeting

Our AGM is to be held Monday 6 May at 6pm at Domain Lodge, Grafton, Auckland. Please check the details on our website.

You and your whanau are invited to attend.

If you wish to stand for the roles listed below, please send a letter of nomination to headandnecknetwork@gmail.com by 5pm 20 April, 2019. You will need to have a seconder for your nomination.

  • Chair
  • Secretary
  • Treasurer
  • Committee Member

Prior to the AGM (22 April) you will receive:

We encourage you and your family to register as members of the Network.

Auckland/Northland Review of Head and Neck Cancer Services

There are a number of projects underway to improve services for people affected by head and neck cancer.

  1. A new framework establishing levels of hospital preparedness for treating head and neck cancer is complete. Complex surgery should only take place in hospitals that have the facilities and the staffing to support patient safety and quality care.
  2. All public regional hospitals will be accredited to this framework. Not all hospitals will be able to do everything, and patients will need to travel to Auckland for certain treatments.

  3. The process for developing the integrated HNC Multidisciplinary Pathway in 3 distinct phases (GP referral to MDM, MDM to discharge and Discharge into survivorship) was outlined and supported.

  4. An updated Regional Recruitment Process was endorsed. Recruitment for all senior medical officer  positions working in the Regional HNC Service will need the approval of the Implementation Oversight Group.

  5. A new Advanced Allied Health Practitioner position description was approved.

  6. The Pathway Co-design Group is advancing work to improve the MDM experience for patients; the MDM booklet for patients is currently being refreshed. The group is looking to recruit more consumers (at least one of whom identifies as Maori), to change the name to the “Patient Co-Design Group” to become more encompassing and to meet quarterly in 2019.

  7. A report on indicative additional expenditure in the 2019/20 financial year requires more work. A subgroup has been established to review and prioritise expenditure items, noting that the report is indicative only i.e. a Business Case is required before there is any actual expenditure. It was agreed at the meeting that Oral Health is a priority and ADHB advised that a Project Manager to support the Oral Health work-stream is about to be appointed.

Auckland Support Group Meeting 2019

Our next meeting is held in the evening. We will meet at 6pm on 6 May 2019, at Domain Lodge. See the website for details. We are hoping to welcome many new attendees, those who work or have not attended a support group meeting before. Be rest assured the meeting with be low key with the emphasis on getting to know each other.

April Meeting

We had a small but vibrant turn out for our April meeting. Hannah Davies from the Auckland Health Foundation talked to us about the redecorating of the whanau room in ward 74. There were plenty of ideas, and experiences shared. Sarah Devine, of the Auckland DHB talked to us about patient feedback surveys. There are surveys for Inpatient Experiences (when you stay in hospital) and Outpatient (when you visit for a clinic appointment). We learnt that many patients report the same issues around adequate information and communication. Finally, we had Caryn Tasker and Tracey Hale from the Northern Regional Alliance speak to us about the changes to the Multi Disciplinary Meeting handbook. There was good discusion.

Thank you, to everyone who attended and we look forward to our next meeting 6 May 2019.

New Support Resources for You

We are aware of the great work of caregivers in supporting people affected by head and neck cancer. This week we have a resource for caregivers of newly diagnosed patients. Advice for Caregivers (Early days)

Useful Patient Technologies

We bring you new development in technologies which support treatment, care and support. This week...

At our Auckland Support Group meeting patients were keen to receive a survivorship plan after treatment. There is an excellent resource here https://oncolife.oncolink.org/ Click the icon

You will receive a plan that includes:

  • Coordinating Your Care
  • Follow Up Care For Head & Neck Cancers: Tongue, Lip, Oropharynx, Nasopharynx
  • Surgery Side Effects
  • Risks Related to Medications
  • Radiotherapy Side Effects
  • Healthy Living After Cancer
  • Life after Cancer

It is well worth the time and effort to do this.

Head and Neck Cancer National News

Immuno-oncology treatment
KEYTRUDA is an immuno-oncology treatment for advanced and re-ocurring head and neck cancer. It may be used when platinum and cetuximab-based* therapies do not work, or are no longer working. You can find our more here.

New Zealand Health and Disability Review

We are intending to make a submission on the current state of the New Zealand health and disability system. We will collate all your responses and present them to the Review. Submissions from organisations are powerful. We intend to advocate for the best treatment, care and support for people affected by head and neck cancer. If you wish to share your thoughts you can do so by accessing our survey here. https://www.surveymonkey.com/r/GZZY9F8

World Head and Neck Cancer Day 2019

If you are interested in holding and event or helping out with an event be sure to let us know. Email: headandnecknetwork@gmail.com

If you are interested in making and selling ribbons on the day. Let us know. We have ribbon, pins, and thread. You can make them while watching Netflix!  If you can sell them for $1 each, that money will go towards supporting patients through the Network.

Save The Date!


Looking for answers or support?

The Cancer Society knows that going through cancer is tough and can raise many questions. They want you to know that they are here for you. From help with getting to your medical appointments or understanding your treatment options, to offering practical support, they can help.

The Cancer Society can help you find answers to questions about your treatment and its effects. There are pages of cancer information online and in booklets, and they are always available for emotional support when things get tough.

For answers, support or just a chat, call us free on 0800 CANCER (226 237) Monday to Friday, 8.30am–5pm.

Thank You to our Corporate and Community Partners

International Groups

Online Support Community - Head and Neck Cancer Alliance

SPOHNC | Support For People with Oral, Head and Neck Cancer

HNC Support International: Head and Neck Cancer Support

Head and Neck Cancer | Cancer Support Community

Throat Cancer Support and Resources - Throat Cancer Foundation

Head and Neck Cancer Alliance Support Group & Community - Inspire

The Oral Cancer Support Forum

Head and Neck Cancer Survivors

Be sure to add our email address to your address book or safe senders list so our emails get to your inbox.

Read more…

Health and Disability Survey

We are intending to make a submission on the current state of the New Zealand health and disability system. We will collate all your responses and present them to the Review. Submissions from organisations are powerful. We intend to advocate for the best treatment, care and support for people affected by head and neck cancer. If you wish to share your thoughts you can do so by accessing our survey here. https://www.surveymonkey.com/r/GZZY9F8

The Government is currently asking for feedback on the New Zealand health and disability system. The deadline to submit feedback is 31 May 2019.

This first round of consultation is seeking feedback on how the health and disability system is working currently and to identify critical issues to improve the effectiveness and equity of the system.

You can give feedback by completing an online survey in English, Te Reo Māori or Plain English.

Background about the review In May 2018, Health Minister Dr David Clark announced the review of the New Zealand health and disability sector. He said the review would "... look at the way we structure, resource and deliver health services – not just for the next few years but for decades to come."

The Terms of Reference for the review state that the purpose of the review is to "... identify opportunities to improve the performance, structure, and sustainability of the system with a goal of achieving equity of outcomes, and contributing to wellness for all, particularly Māori and Pacific peoples."

The review has a broad focus on achieving "wellness, access, equity, and sustainability" in the health and disability system. The review will consider a number of points, including: "Contribution of and the interaction between health and other social sector agencies in supporting health and wellness."

David Clark said the Terms of Reference for the review are "deliberately wide" and "allow for a more thorough assessment of the disability sector."

The Review will be chaired by Heather Simpson. The other review panel members are Shelly Campbell, Professor Peter Crampton, Dr Lloyd McCann, Dr Margaret Southwick, Dr Winfield Bennett and Sir Brian Roche. The panel is expected to release an interim report in August 2019, following the consultation. A second round of consultation will be invited on the interim report. A final report is expected to be provided to the Government in March 2020. For questions email systemreview@moh.govt.nz.

Thank you to those who have shared their thoughts on improving care for people affected by cancer. If you have not yet had your say you can do so here. https://www.surveymonkey.com/r/GZZY9F8

Read more…

Weekly Wednesday 27 March 2019

How to Cope With Post-Cancer Fear


Credit: Photo compliments of Robert Brown Robert Brown, a retired attorney, leans on a sign post at Chamonix-Mont-Blanc, a resort area in the Alps near the junction of France, Switzerland and Italy. Brown has survived throat and bladder cancer and continues to live an active life that includes golf, backpacking and yoga.

You get cancer. You get it fixed. After treatment ends, you get something new: a black cloud that can follow you around for decades. Is this normal?

“There is no ‘normal’ end date for fears after a brush with cancer,” says Dr. Lidia Schapira, medical director of the Cancer Survivorship program at the Stanford Comprehensive Cancer Institute in Stanford, Calif.

“Data from the National Cancer Institute show that up to twenty five percent of cancer survivors experience some symptoms of depression and forty five percent experience anxiety,” Schapira says. “To put that in perspective, about twenty percent of veterans that served in Iraq or Afghanistan suffer from post-traumatic stress disorder.” Read more….


Immunotherapy likely to become standard for recurrent/metastatic head and neck cancers

 

The standard treatment for patients with recurrent or metastatic head and neck cancers is expected to change from chemotherapy to immunotherapy based on results of several randomized, phase 3 studies, according to a presenter at HemOnc Today New York.

It is still unknown whether a regimen of immunotherapy and chemotherapy could become the standard of care.

“The treatment of recurrent disease in head and neck cancers is very challenging and has remained challenging even though we have made significant progress over the last few years with checkpoint inhibitors,” Robert I. Haddad, MD, chief of the division of head and neck oncology at Dana-Farber Cancer Institute, said during his presentation. “These patients have significant quality-of-life issues. They usually have a lot of pain, they can’t work, and many of them don’t socialize... so there’s a lot of reasons to look at this patient population and improve outcomes.” Read more here....

Head and Neck Cancer Survivors Share Tried-and-True Tips for Oral Care After Treatment

Treatments for head and neck cancer, especially chemotherapy and radiation, can trigger changes in your mouth that will require extra care.

We went straight to those who know best — head and neck cancer survivors — to find out what works and what doesn’t.

Keep reading to get tips from Head and Neck Cancer Alliance (HNCA) ambassadors.

Read more...

Read more…

Cancer Care at a Crossroads 2019 (2)

 

Professor Skegg

Heather Anderson continues her summary of attending the Cancer Care at the Crossroads conference. 

For me the Conference started on Wednesday afternoon. The pre-Conference lecture was from Dr Fatima Cardoso.  She is a world reknown oncologist with an interest in Advanced Breast Cancer (ABC) from Lisbon. She and others have been instrumental in setting up ESMO. This is a 10 step guidelines program to improve outcomes for those with ABC.  Dr Cardoso travels the world helping countries roll out these guidelines. It is her belief that they can available for all cancers. Where the guidelines are in place, there is a significant improvement in outcome for ABC patients.  https://www.otago.ac.nz/wellington/otago706540.pdf

At this lecture I was lucky enough to meet Monica Koia from Palmerston North.  She is about to complete her PHD in Maori Health. We attended the opening at Parliament. We listened to personal cancer stories from Pip Brown (Ladyhawke) and Mike Hesson, whose brother passed with cancer.

The most interesting was that of Prof Skegg – (Here is a link to his presentation).  In it he spoke of all the years of conferences and meetings that he had been involved with.  He talked of the successive governments and Ministers of Health he had worked with.  He spoke highly of some work but was firm in his comments that the previous Government had dropped the ball.  He challenged the Minister of Health and MoH to actually do something and make a difference.

Read more…

Weekly Wednesday 20 March 2019

20 March 2018

This we look at asprin and survival of head and neck cancer patients,

Collection and use of medical data, the risks of opioid misuse, the cost of chronic pain to New Zealand, and mental health issues and aHNC diagnosis..#headnecknz #hnc #hnca

Can Aspirin Use Improve Survival in Certain Patients With Head and Neck Cancer?

Nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin may help improve the chance of survival for some patients with cancer, according to a new study.

The study, published in the Journal of Experimental Medicine, suggests that regular use of aspirin may be effective against some types of head and neck squamous cell carcinoma (HNSCC). For the study, researchers from the University of Pittsburgh School of Medicine and the University of Arizona analyzed a group of 266 patients with HNSCC who had their tumors surgically removed and were treated with adjuvant chemotherapy and/or radiotherapy.

The researchers found that regular aspirin use dramatically improved survival for patients with mutations in a gene called PIK3A, which is the most commonly altered oncogene in HNSCC. Thirty-four percent of all tumors in HNSCC carry mutations that activate PIK3A, according to the study. Twenty-eight percent of the tumors in the study had an activating alteration of the PIK3A gene.

Read more...

Collection, use of consumer data puts sensitive health information at risk, groups say

The information that consumers share online, including sensitive health data, is being collected, shared with third parties and sold, often without consumers’ awareness.

That is putting consumers’ privacy at risk, according to many federal lawmakers and civil rights groups at a hearing on Capitol Hill this week. Read more...

Patients with head and neck cancer may be at risk for opioid misuse

Jessica D. McDermott

Patients with oral and oropharyngeal cancer appeared likely to receive opioids for pain management during treatment, and a significant number continued to use them 3 and 6 months later, according to a study published in Otolaryngology-Head and Neck Surgery.

“We felt like it was a long-term problem for some of our head and neck patients, but we didn’t know how much of a problem,” Jessica D. McDermott, MD, investigator at University of Colorado Cancer Center and assistant professor at CU School of Medicine, said in a press release. “You shouldn’t need opioids at the 6-month point.” Read more….

Chronic pain comes at a huge financial and emotional cost but New Zealand lacks an action plan

It started with a fractured pelvis which Deb Thompson assumed would "come right" with rest and time - but six years on her chronic pain remains.

Attempts to bring the unseen and lingering condition under control proved fruitless with all her doctors' suggestions and two hip operations making little difference to Thompson's quality of life.

"The mentality is that you can fix everything but some things can't be fixed ... it's really hard to get your head around."

Read more…

Mental health disorders more common after head and neck cancer diagnosis

Findings from a cohort study of more than 52,000 patients diagnosed with head and neck cancer revealed that the prevalence of mental health disorders increased after they received the cancer diagnosis.

Although prior research has found a link between mental health disorders (MHDs) and head and neck cancer (HNC), large-scale analysis is needed, Neerav Goyal, MD, MPH, from the division of otolaryngology–head and neck surgery, Pennsylvania State University College of Medicine, and colleagues wrote.

Read more...

Read more…

Network News - 18 March 2019

 

Kia ora tatou,

Our deepest, heartfelt, condolences to the family and friends of the victims in the Christchurch Mosque shootings. Arohanui.

It's hard to find the words that will acknowledge what happened and how it has made many of us feel. I strongly suggest that if the recent events have left you feeling overwhelmed you seek support from the Cancer Society,  or your General Practitioner.

This week our Network News include a summary of the Palmerston North Support Group meeting held in January. If you have attended a support group meeting and would like to share, please email us and we will be sure to include in the NN. Remember, we all learn through sharing of ideas and information.
We have new support resources for you, and encourage you to participate in our survey to gauge your thoughts and feeling around the New Zealand Health and Disability System. Use our survey to have your say. We will be submitting a final report on behalf of all members in early May.

Recently, there was some confusion over the various support services available to people affected by head and neck cancer in New Zealand.

The Head and Neck Cancer Support Network is an incorporated society. No. 2643011. The Network is a New Zealand wide group set up to connect, support and advocate for people affected by head and neck cancer. The Network is holding the AGM on 6 May, and you will be notified of the details, and given the opportunity to participate over the coming months.

There are other New Zealand support groups run by District Health Boards, and the Cancer Society. These are informal and have the purpose of providing social and educational support.

There are two New Zealand based Facebook groups which provide online support. Both groups are closed to the general public. If you know of more groups, please let us know and we will add to our website.

Head and Neck Cancer Support Aotearoa

The Explorers - Head and Neck Cancer Support

International Groups

Online Support Community - Head and Neck Cancer Alliance

SPOHNC | Support For People with Oral, Head and Neck Cancer

HNC Support International: Head and Neck Cancer Support

Head and Neck Cancer | Cancer Support Community

Throat Cancer Support and Resources - Throat Cancer Foundation

Head and Neck Cancer Alliance Support Group & Community - Inspire

The Oral Cancer Support Forum

Head and Neck Cancer Survivors

Network News

Palmerston North Support Group January Meeting

From Head and Neck Nurse Maura Foley

We held the first meeting of the year in our usual space at the Cancer Society,  Ruahine Street. We welcomed two new members and their partners. In total there was about twelve us present.

This meeting had no fixed agenda item. It was a general catch up on how everyone had coped with the Christmas and new year break.  We talked about planning for the new ahead.

In particular there was a lot of chat.  We supported our new members who have had laryngectomies late last year. It was great to see the advice, support and sharing of knowledge. I followed up with phone calls later. The new patients  fed back that just seeing how others are coping with laryngectomies and the fact it does not need to hold you back in getting out and about, going overseas or traveling locally really helped with the mental processing.

Suggestion for future topics:

The role of the Head and Neck Nurse, and who is she!

Medications, and their potential side effects – we have secured the chief pharmacist to do this

talk, and she did her thesis on head and neck cancer and medications, so should be a great talk.

Cutting edge technology and what’s projected regarding new treatment s in the near future.

Palliative services – maybe Raewyn from the Hospice

Social worker, quick review of their services, and any benefits that may be applicable.

Dietician – we have struggled to get a speaker for this.

A great deal of chat and laughter was had, and a suggestion to go for a cup of tea or coffee outside of the group for those that wanted too. Next meeting planned for 18 February 2019


Auckland/Northland Review of Head and Neck Cancer Services

There is steady progress with set of recommendations from a group looking at improving the Multi Disciplinary Meeting for patients, friends, and family/whanau. These recommendations will be shared with teams in other hospitals outside of Auckland.

Auckland Support Group Meeting 2019

Our next meeting is held in the evening. We will meet at 6pm on 18 March 2019, at Domain Lodge. See the website for details. We are hoping to welcome many new attendees, those who work or have not attended a support group meeting before. Be rest assured the meeting with be low key with the emphasis on getting to know each other.

AGM for Head and Neck Cancer Support Network

Our AGM will be held on 6 May 2019 at 6pm. It will be online, so anyone can participate. You will be able to register and vote prior to the event. If you are interested in taking on a role in our Incorporate Society, please contact us for more information. Email: headandnecknetwork@gmail.com  More details to follow.

Let's Chat!

Every Monday morning at 11 am. (You must be logged in to participate!)

In response to our mission to connect and support people affected by head and neck cancer we are providing online chat for Network members.  This creates real-time, fun and easy communication possibilities. If you are logged in to the our website http://headandneck.org.nz  You can chat to other members in other parts of New Zealand, who share the same cancer experience as yourself. We are hopeful that this Chat feature will encourage more peer to peer support. We will run online chat for one hour every week from Monday, 11 am to 12pm. If you have a burning question, then get online and ask it. This week Diana Ayling is taking the questions, so please join in and introduce yourself.

You can find out more here.....

New Support Resources for You

Talks to remind you that your story isn’t over

Feel like you can’t recover from a major setback? Let these talks remind you that this is not the end — there is much more left to your story. Click here for more...

Useful Patient Technologies

We bring you new development in technologies which support treatment, care and support. This week...

Tele Health….

Mobile Health or mHealth uses mobile communication technologies, including the delivery of health information, health services and healthy lifestyle support programmes. Mobile communication devices include mobile phones (usually smartphones), tablet computers, mobile sensors and other devices that use cellular networks (3G or 4G), Wi-Fi or Bluetooth. Functionality includes text messaging (SMS), smartphone/tablet apps, mobile web browsing, video calling, MMS/pxt, and allowing the mobile use of technologies such as QR code scanning and GPS locating.

 

EXAMPLES OF NEW ZEALAND MHEALTH PROGRAMMES INCLUDE:

  • STOMP: a text messaging smoking cessation support programme that was implemented as txt2quit by The Quit Group
  • FoodSwitch: a smartphone app to provide point-of-sale nutritional advice on foods and suggest healthier alternatives
  • Listen Please: a clinical translation smartphone app for patients to communicate with clinicians in emergency/intensive care situation.

 

You can read about the ideas of Dr Lance O’Sullivan and bringing tele-medicine to the Far North. Lance O'Sullivan sets up NZ's first virtual medical centre in town with no doctor

 

Head and Neck Cancer National News

Health and Disability  Survey

The Government is currently asking for feedback on the New Zealand health and disability system. The deadline to submit feedback is 31 May 2019.

This first round of consultation is seeking feedback on how the health and disability system is working currently and to identify critical issues to improve the effectiveness and equity of the system.

You can give feedback by completing an online survey in English, Te Reo Māori or Plain English.

Background about the review

In May 2018, Health Minister Dr David Clark announced the review of the New Zealand health and disability sector. He said the review would "... look at the way we structure, resource and deliver health services – not just for the next few years but for decades to come."

The Terms of Reference for the review state that the purpose of the review is to "... identify opportunities to improve the performance, structure, and sustainability of the system with a goal of achieving equity of outcomes, and contributing to wellness for all, particularly Māori and Pacific peoples." The review has a broad focus on achieving "wellness, access, equity, and sustainability" in the health and disability system.

The review will consider a number of points, including:

"Contribution of and the interaction between health and other social sector agencies in supporting health and wellness."

David Clark said the Terms of Reference for the review are "deliberately wide" and "allow for a more thorough assessment of the disability sector."

The Review will be chaired by Heather Simpson. The other review panel members are Shelly Campbell, Professor Peter Crampton, Dr Lloyd McCann, Dr Margaret Southwick, Dr Winfield Bennett and Sir Brian Roche.

The panel is expected to release an interim report in August 2019, following the consultation. A second round of consultation will be invited on the interim report. A final report is expected to be provided to the Government in March 2020.

For questions email systemreview@moh.govt.nz.

Thank you to those who have shared their thoughts on improving care for people affected by cancer. If you have not yet had your say you can do so here. https://www.surveymonkey.com/r/GZZY9F8


World Head and Neck Cancer Day 2019

We are starting to plan for this very exciting day. This year the day falls on a Saturday which opens the door to greater connection and collaboration. We will be supporting all kinds of organisations to recognise the day. If you are interested in holding and event or helping out with an event be sure to let us know. Email: headandnecknetwork@gmail.com

If you are interested in making and selling ribbons on the day. Let us know. We have ribbon, pins, and thread. You can make them while watching Netflix!  If you can sell them for $1 each, that money will go towards supporting patients through the Network.

Save The Date!



 

 

 

 

 

 

 

 

 

 

Looking for answers or support?

The Cancer Society knows that going through cancer is tough and can raise many questions. They want you to know that they are here for you. From help with getting to your medical appointments or understanding your treatment options, to offering practical support, they can help.

The Cancer Society can help you find answers to questions about your treatment and its effects. There are pages of cancer information online and in booklets, and they are always available for emotional support when things get tough.

For answers, support or just a chat, call us free on 0800 CANCER (226 237) Monday to Friday, 8.30am–5pm.

Thank You to our Corporate and Community Partners

Be sure to add our email address to your address book or safe senders list so our emails get to your inbox.

Read more…

Weekly Wednesday 13 March 2019

13 March 2018

This week our weekly news looks at risks of robotic surgery, a study on managing MRSA, improving health after treatment, post code care on bowel cancer, and a lovely piece on surviving cancer. #headnecknz #hnc #hnca


FDA sounds an alarm on using robotic devices in cancer surgeries, citing concerns about safety and results

 

The Food and Drug Administration on Thursday warned against the use of robotically assisted devices for mastectomies and other cancer surgeries, asserting the products may pose safety risks and result in poor outcomes for patients.

The agency said it decided to issue its warning after reviewing studies suggesting that robotically assisted devices were being used to perform cancer procedures for which there is limited data on their safety and effectiveness. The FDA has not authorized the devices for mastectomy or for the treatment or prevention of cancer.

Read more…

Study: Post-hospital MRSA infections cut by getting patients to use antiseptic

The incidence of MRSA infections among patients known to carry the bacteria on their body following hospitalizations was cut by 30% in a collection of California hospitals by getting patients to properly clean their skin and noses after discharge, according to a new study.

Published in the New England Journal of Medicine, the trial studied more than 2,000 patients discharged from the hospital. They were given either an educational binder with tips on how to prevent infections via hygiene or the binder along with a combination of over-the-counter antiseptic for bathing and showering, plus prescription antiseptic mouthwash and antibiotic nasal ointment.

The study, known as Project CLEAR (Changing Lives by Eradicating Antibiotic Resistance), was conducted in a collaboration among the University of California Irvine, Los Angeles Biomedical Research Institute at Harbor-UCLA, and Rush University.

Read more….

Improving Health After Treatment

UPON GARNERING​​ the 1949 Nobel Prize in Literature, William Faulkner famously opined, “I believe that man will not merely endure: he will prevail.” What a wonderful motto for the growing population of cancer survivors.

At long last, cancer survival statistics are beginning to reveal real progress. From 1991 to 2015, the cancer death rate in the U.S. dropped by 26 percent, resulting in an estimated 2.4 million fewer cancer deaths. The number of people living with a cancer diagnosis or its aftermath has grown and is expected to continue growing. In 2016, more than 15.5 million Americans with a history of cancer were alive; that number is projected to exceed 20 million by 2026. As a result, the U.S. health care system faces a looming challenge: how to deal with the wide array of health and wellness aftereffects faced by children and adults who were once cancer patients. Read more…

Coping with the Tidal Wave of Cancer

Recovering from cancer and its aftermath is like grief; always changing, undulating and rippling like a tide.

Like many people, I was very naïve about how much cancer would change my life. I thought that one got cancer, was treated and afterwards was “cured” and moved on. Of course I knew there were others who passed away from this devastating disease, and have lost dear friends and family to this vicious disease. What I never realized was that once we are diagnosed with cancer, our lives are forever changed.

There are more treatments for cancer now than ever before, including immunotherapy, and new chemo medications are being used all the time. Radiation treatments have eradicated some cancers, along with more precise laser surgeries to target tumors. Oral chemo, IV chemo and shots are all on the increase. This is a positive step because many of us are living a lot longer and feel blessed. Read more...

Aucklanders twice as likely to survive bowel cancer surgery than those elsewhere

Bowel cancer patients living in Auckland are more than twice as likely to survive surgery than those living elsewhere in New Zealand.

It's an "unacceptable" finding – one which has prompted Bowel Cancer New Zealand to call for an urgent investigation into the "wide variation" in mortality rates across the country. Read more...

Read more…

Weekly Wednesday 6 March 2019

Personalized Risk-Stratified Cancer Follow-Up Care: Its Potential for Healthier Survivors, Happier Clinicians, and Lower Costs

An interesting new take on managing the increasing numbers of people surviving cancer with high needs.

Abstract ONLY: The growth in the number of cancer survivors in the face of projected health-care workforce shortages will challenge the US health-care system in delivering follow-up care. New methods of delivering follow-up care are needed that address the ongoing needs of survivors without overwhelming already overflowing oncology clinics or shuttling all follow-up patients to primary care providers. One potential solution, proposed for over a decade, lies in adopting a personalized approach to care in which survivors are triaged or risk-stratified to distinct care pathways based on the complexity of their needs and the types of providers their care requires. Although other approaches may emerge, we advocate for development, testing, and implementation of a risk-stratified approach as a means to address this problem. This commentary reviews what is needed to shift to a risk-stratified approach in delivering survivorship care in the United States.

Why Do Only Eight Percent Of Cancer Patients In The U.S. Participate In Clinical Trials?

Most cancer clinical trials don't meet their enrollment targets and it has been previously thought that patient reluctance was behind this. Now a new study published today in the Journal of the National Cancer Institute, led by researchers from the Fred Hutchinson Cancer Research Center in Seattle challenges that by suggesting that other factors are primarily responsible.

"Patients are often fearful of participating in clinical trials, and many consider trial participation as appropriate only for those with no other choices. This is unfortunate since patients receive excellent cancer care in trials," said Dr. Joseph Unger, a health services researcher and biostatistician who led the study. Read more…

HPV stigma and misunderstanding really concerning, say campaigners

A “really concerning” level of stigma and misunderstanding about the human papilloma virus could be putting women off going for vital smear tests, campaigners have warned.

A survey of more than 2,000 women by Jo’s Cervical Cancer Trust suggested incorrect knowledge about the virus, known as HPV, is commonplace.

Meanwhile there are a wide range of stigmas associated with HPV that lead to high levels of misplaced “fear or shame”, according to the responses.

HPV is a common infection spread through close skin-to-skin contact, usually during sex or oral sex.

Eight in 10 women will have some form of HPV infection in their lifetime, but only very few who have specific high-risk types of the virus will go on to develop cancer. Read more...

The Challenges of Care-Giving and Supporting

Canopy TV – an online news channel for the cancer community.

Canopy TV aims to provide interesting and topical information to cancer patients and their families, increase people’s understanding of cancer and showcase interesting clinical developments in cancer treatment.

https://youtu.be/brD5VmmhHpg

Life after cancer: More survivors live longer, face new health challenges

When Susan Leigh finished treatment for Hodgkin lymphoma in 1972, she says, “no one knew what was going to happen.”

Certainly, no one knew the Arizona woman would develop three more cancers and heart damage, all probably linked to the aggressive radiation and chemotherapy treatments that helped save her life.

Those treatments were new at the time. When Leigh finished them, apparently cancer-free, she was a pioneer.

“I remember saying to my radiation doctor, 'What do I do now?' " says Leigh, 71, a retired cancer nurse. " 'What do I do to keep this from coming back and to recover?'

"He said he really didn’t know. He said maybe I could try taking a good multivitamin pill.”

Four decades later, doctors know much more. They know some cancer survivors are at increased risk for other cancers and for problems ranging from brittle bones to heart failure.

They also know more about how to help patients head off or manage those risks.

But few patients get that help – even 13 years after the influential Institute of Medicine warned that many survivors were “lost in transition” and weren't getting adequate follow-up care.

The number of cancer survivors continues to grow, yet high-quality, coordinated survivorship care is still infrequent,” experts from the National Academies of Sciences, Engineering, and Medicine said in a recent follow-up report (the nonprofit group includes the former Institute of Medicine).

“Strides have been made, but there’s also been an acceleration in the demand,” says Neeraj Arora, associate director for science at the nonprofit Patient-Centered Outcomes Research Institute. Read more here….

Read more…

Heather Anderson, is one of the Network Committee members. Together with Brian Sheppard, she attended the recent Cancer Care at the Crossroads Conference, at Te Papa, Wellington. In this article, Heather shares her thoughts and impressions from the conference.

My mind has been spinning since attending the Cancer at a Crossroads Conference. The conference was at Te Papa in Wellington. So much information and so many phenomenal people. The Data is so specific I will not even try and report on that. – we have were that the slide shows will be available to us and we will share as and when they come out.

I attended the Conference as Representative of the Network. I was very very aware of the weight of responsibility to: a) represent our Network in the best possible way I could; b) put forward the concerns of our members as and when opportunities arose; c) make connections as much as I could in the timeframe that I could. I wanted to make connections to assist us to reach people in areas where we did not have good representation. I wanted find out how our Network could appeal to more people in particular our Maori people. I wanted t find a way that we could connect better with all New Zealanders affected by head and neck cancer.

There were times that I felt I was under-qualified to attend but at the end of the day perhaps I was more than qualified. I have now had Cancer 3 times. Each cancer was individual and non-related. I have a rare cancer. I am affected by post-code care. I am one of the working poor in New Zealand. Anyone attending from a central hub came in with all the tools available to them. For those of us outside of those hubs is what needs a spot light and focus on. The only other factor I could have bought to the table would have been indigenous. That is not to be – however as you will see I did find a way to slightly mitigate that lack.

Brian has written a call to action letter and that was the feeling through out the sessions.

On Wednesday afternoon the Conference started with a pre-Conference lecture. Dr Fatima Cardoso is a world re-known Oncologist from Lisbon in Portugal. She has an interest in Advanced Breast Cancer (ABC.. She and others have been instrumental in setting up ESMO. ESMO is a 10 step guidelines program to improve outcomes for those with ABC.

Dr Cardoso travels the world helping countries roll out these guidelines. It is her belief that they are relevant for all cancers. ABC patients have had significant improvement in outcomes since introducing the guidelines.

At this lecture I was lucky enough to meet Monica Koia from Palmerston North. She is completing her PHD in Maori Health. We attended the opening at Parliament. We listened to personal cancer stories from Pip Brown (Ladyhawke) and Mike Hesson. Mike's brother passed with cancer. The most interesting speaker was Prof Skegg – I so want to get a copy of his speech. He spoke of all his years of conferences, meetings. His work with successive governments and Ministers of Health. He spoke highly of some work. He was firm in his comments that the previous Government had dropped the ball. He challenged the Minister of Health, and MoH to actually do something and make a difference. That speech set the tone for the conference.

I will post each session with links to the speaker and their work.

Things I take away from the Conference on behalf of Head and Neck Cancer Support Network and myself -

I met and talked to as many as I could – many only for a few minutes but I do have the email addresses of all attendees. In all meetings I made sure everyone was aware that I was there representing the Network.

I explained that HNC is on the increase in particular with HPV. That HNC is the one cancer that cannot be hidden from sight. Many had not thought of that.

Different options were given for the government to consider – Starship Hospital services, ESMO from Europe, CPAC from Canada and Cancer Institute NSW – all getting good outcomes.

A clearer understanding of Institutional Racism was gained. There are people and organisations working to address poorer outcomes for specific groups.

Most importantly I believe, and the one that I feel will give us the greatest impact going forward, is the connections I made on a more personal note with Monica. She introduced me to attendees within the Maori community. The question I kept asking was how can we connect better.

Read more…

Weekly Wednesday 27 February 2019

27 February 2018

This week our weekly news looks at Google’s move into Electronic Health Records (EHR). a new device to treat tumours in head and neck cancer, ADHB receives the Rainbow Tick, and the reporting of problems for women surgeons continues.

Google patent indicates plans to develop Electronic Health Record to predict patients' clinical outcomes

Google appears to have plans to develop its own electronic health record (EHR) for clinicians that gathers patients’ medical records and then leverages machine learning to predict clinical outcomes, according to a patent application published by the U.S. Patent and Trademark Office last week.

First reported by Politico today, the patent application was filed back in August 2017. Among the inventors on the application are more than 20 Google employees, particularly from the Google Brain team, or its artificial intelligence division, including AI head Jeffrey Dean.

The 40-page application describes a new computer system, with a healthcare provider-facing interface, that predicts and summarizes medical events from EHRs.

The application describes a system consisting of three parts: a computer memory storing aggregated health records from millions of patients, a computer system executing deep learning models on patients’ health records converted into single standardized data structure format, and an interface, displayed on a computer terminal, tablet or smartphone, that displays predictions for future clinical events and pertinent past medical events for patients. Read more…

A New Device in the War Against Cancer

The device with the fancy name, Elekta Unity MR-linac, addresses a decades-old problem in cancer care: the fact that treatments are not targeted precisely enough to avoid destroying many healthy cells along with the tumor cells.

One of the reasons doctors have been at a disadvantage fighting cancer is that tumors move anywhere from 1 to 2 centimeters when patients breathe. They shift, too, when a patient’s bladder fills. As a result, previous treatments — which involved static images of the tumor taken a week or more before radiation — ran the risk of missing parts of the tumor and hitting healthy cells.

By using magnetic resonance imaging, radiation oncologists can now use a precise image of the tumor to direct the radiation beams.

The device should improve treatment of many different cancers including those of the head and neck, the esophagus, pancreas, prostate, cervix and breast, according to Christopher Schultz, chairman of the department of radiation oncology at Froedtert and the Medical College of Wisconsin. He said the device should also help researchers by providing a clearer picture of how tumors shrink, grow or move during treatment, and which therapies are most effective.

Read more...

ADHB achieves the Rainbow Tick and the Accessibility Tick

Auckland DHB has achieved Rainbow Tick accreditation for inclusivity and diversity, making it the first District Health Board in New Zealand to reach this milestone.

Last December, Auckland DHB also became the first DHB to receive the Accessibility Tick for their efforts to make the work place more accessible and inclusive for people with disabilities.

Auckland DHB Chief Executive Ailsa Claire says the two ‘tick’ programmes are the right thing to do for staff, patients and whānau.

“We serve a diverse community and we want Auckland DHB to be inclusive for our patients, whānau and employees. We want our hospitals and clinics to be a place where everyone is accepted for who they are and where our people are supported to do their life’s best work.

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'Kill myself or leave': female surgeons reveal horrifying conditions

Sexual harassment, bullying and a contempt for motherhood are driving aspiring female surgeons out of operating theatres.

Women training to become surgeons have seriously contemplated suicide, been invited to fondle the nipples of a male colleague and dismissed as childbearers undeserving of medical training, a series of in-depth interviews reveals.

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