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INCA Monthly Newsletter - September 2018 News Update
INCA Members' News
Medical News
In Memoriam

INCA Launches World NET Cancer Day 2018 Campaign Toolkit


World NET Cancer Day is an annual event held on the 10th of November.
It was created to increase awareness of Neuroendocrine cancers (NETs) and to provide a voice to the NET community for improved diagnostics, treatments, information, care and research.
Download our toolkit and join us for NET Cancer Day 2018!

Patients in the Focus of ECCO Cancer Summit 2018


The ECCO 2018 European Cancer Summit, was held on 7-9 September 2018 in Vienna, Austria bringing worldwide leaders from the cancer healthcare, patient advocacy and stakeholder communities together in a unique multidisciplinary forum. Connecting science with real life by driving policy evolution at the highest political level, the Summit debated leading-edge ideas on outcomes research, health economics and organisation of cancer care delivery; determined consensus resolutions for improving health systems; and decided on an action plan for the way forward to ensure ideas translate into policies that will impact daily clinical practice.

With nearly 400 attendees, 21% of which were patient advocates, the ECCO summit was focused on decision making around better outcomes for patients. Huge recognition was given to the ECCO Patient Advisory Committee (PAC), comprised of 18 umbrella cancer patient organizations, including INCA, represented by Teodora Kolarova. The input and advice provided by PAC members were instrumental to the creation, concepts and sessions of the ECCO 2018 European Cancer Summit.
The following resolutions were proposed, discussed and agreed at the Summit:

By 2023 an agreed set of core standards and evidence-based indicators (based on processes and patient outcomes) to measure the quality of all cancer services in European countries should be in place. READ MORE
By 2025, all national cancer plans in Europe should contain ambitious and measurable goals and actions to improve the integration of primary care healthcare professionals and informal carers within multidisciplinary care to patients. READ MORE
By 2025, in respect to accessing financial services*, the right of cancer survivors not to declare their cancer 10 years after the end of the active treatment** and 5 years if they had cancer under 18, should be codified across European countries. READ MORE
Presentations from the Summit are now available online

INCA Experience Shared as Best Practice Across the Patient Advocacy Community


INCA Executive Director Teodora Kolarova presented the INCA Unmet Needs initiative and its impact on evidence-based advocacy at the 2nd international conference for organizations representing people with chronic lymphocytic leukemia (CLL) - CLL Horizons & the 3rd international conference for organizations representing people with myeloproliferative neoplasms (MPN) - MPN Horizons in Prague on September 2nd.

The MPN & CLL Horizons conference is the main global conference for both MPN & CLL patient organizations, aiming to exchange best practices and help participants to develop skills to support their roles as advocates.
MPN Horizons and CLL Horizons were held jointly, with all advocacy sessions common to both events, attended by about 80 participants.
INCA Members' News

AMEND Is Working With ENDO ERN to Improve Access to Gold Standard Treatment


AMEND is working with the European Reference Network for Rare Endocrine Conditions (ENDO ERN) to help widen access to gold standard treatment throughout Europe. During the European Society for Paediatric Endocrinology (ESPE) conference in Athens, AMEND CEO, Jo Grey was invited to speak in the ENDO ERN Symposium on Paediatric Pituitary Tumours in MEN1. These extremely rare tumours can cause various symptoms due to the additional hormone secretion, causing enormously negative impacts on the children they affect. Given the extraordinary expertise that is required to care for such children throughout childhood, transition and into adult services, the ENDO-ERN can provide the necessary framework to ensure that this is effective.  For more information on ENDO ERN visit their website.

Finding Love and Neuroendocrine Cancer


"Finding Love and Neuroendocrine Cancer" is the next video in Carcinoid Cancer Foundation’s 50th anniversary series. Shock was Dana’s first reaction when she was diagnosed at age 31 with neuroendocrine tumors throughout her body. Her boyfriend couldn’t cope with her diagnosis and Dana found herself alone, her world turned upside down. And then came Brien...

Watch the video on CCF's Youtube channel or Facebook.

CNETS Canada: 2018 NET Research Grant Call for Applications


CNETS Canada is committed to improving the quality of life and survival for NET patients across Canada. To deliver on this vision, CNETS Canada has been supporting NET-research since 2011, initially through a partnership-based approach and since 2016 through its independent Research Funding Framework. This is the third year in which CNETS Canada are offering NET research grants across Canada for NET research based on their framework.

The NET patient community has continually demonstrated a strong commitment to supporting CNETS Canada's fundraising efforts. In March 2018, CNETS Canada reached out to the patient community through an online, anonymous survey to gather feedback and input on setting the research priorities for CNETS Canada sponsored grants for the next 2-3 years. Close to 200 responses from across Canada, to the NET RESEARCH PRIORITIES SURVEY were received. Based on the positive community feedback, the research priorities will be used as part of the eligibility criteria for the 2018 NET research grant competition.

The 2018 Neuroendocrine Tumour Research Grant will provide grant-in-aid for research projects up to a maximum of $40,000 per project.

In 2016 and 2017 CNETS Canada awarded 2 NET research grants per year, based on the research funds that were raised by the Canadian NET Community. For 2018, CNETS Canada is thrilled to announce that 3 NET research grants will be awarded, thanks to the tremendous fundraising efforts of Bailey and Jonathan Daniels. In their honour, this NET research grant will be named The Daniels Constellation Fund for Neuroendocrine Cancer Research. Bailey, a NET cancer patient, and her husband Jonathan are an amazing example of how two people can truly make a difference. Along with their friends, families and supporters they have made an incredibly meaningful contribution to the NET community through their fundraising activities. We extend our sincere thanks to them for choosing to direct their funds towards NET cancer research.

Important dates for the 2018 NET Research Grant Competition:
Call for Applications: September 27th, 2018
Deadline for Pre-Application (Project Title, abstract, keywords and names of applicants): October 31st, 2018
Application Deadline: November 15th, 2018
Anticipated Notice of Decision: December 15th, 2018
Funding Validity Date: 2 years starting July 1st, 2019

NET Patient Foundation Launches Facebook Live Program


The NET Patient foundation currently has over 30 face to face NET Natter local support groups running across the UK, but face to face is not for everyone, so in the summer, utilising already established platforms,  the NPF launched its NET Natter online support groups. One is dedicated to the supporters of NET Patients, ‘Next2NETs’, and the other, ’NET Natter UK Online’,  for any UK  NET patient. The same support structure is in place, with the NPF nurse team ensuring that queries are answered, and that patients or supporters can have the peer support that is so valuable. This has been a real success, and so to add to the content of these groups NPF started its 'Facebook Live' program. Six weekly educational sessions on a given topic. Anyone can feed in a question prior to the event, or  simply ask on the day. It is the NPF's responsibility to ensure that correct information is out there on its social media platforms, but also to gain further insights into the needs and questions of its local community. 

The NET Patient Foundation hopes that this initiative, along with its existing international group, will provide a safe, informative and supportive environment for all those affected by NETs.

NETRF Immunotherapy Update


Immunotherapy has been called one of the most significant advances in cancer in decades. While this approach may work in some cancers, it is unclear if or how immunotherapy can be used in NETs.

The Neuroendocrine Tumor Research Foundation (NETRF) has been leading an effort to understand the potential of immunotherapy in NETs. And now we are beginning to see findings emerge. Researchers shared what they’ve learned at a recent NETRF research symposium. One study was published in a peer-reviewed journal days ago. 

Three NETRF-sponsored studies, by principal investigators Tim Meyer, MD, PhD, Matthew Kulke, MD, and Daniel Halperin, MD, have been seeking to further understand the immune environment of NETs.

Dr. Tim Meyer and colleagues are trying to identify which immune system pathways stop the body from releasing “soldier” cells that can recognize and attack NET cells. “With the support of the NETRF, I have assembled a team of world-leading scientists and clinicians at UCL, London to focus on defining the immune landscape of NETs,” said Dr. Meyer.

Dr. Matthew Kulke and colleagues have been working on a laboratory model to establish the role of immunotherapies in treating small intestine NETs (SI-NETs). “A better understanding of the immune environment of NETs is vital to establish the role immune therapies will have in this setting,” said Dr. Kulke.

Dr. Daniel Halperin and colleagues have been analyzing the immune environment of advanced pancreatic NETs (pNETs), which they have classified, clinically and genomically, to look for patterns that may predict response. “Any findings can directly inform clinical trials of new drugs for our patients who need them. Our hope is that this work will permit us to move the right drugs into trials for the patients most likely to benefit as quickly as possible,” said Dr. Halperin.

More from NETRF.

$10 Million Funding for Rare Cancers

This week Greg Hunt MP announced a further $10 million for funding rare cancers including a Merkel Cell Carcinoma Clinical Trial through the Medical Research Future Fund. Australia has the highest incidence of this rare neuroendocrine skin cancer in the world, so we are happy to see much needed funding for clinical trials from the government. 

An Australia and New Zealand Melanoma Trials Group (ANZMTG) Clincial Trial led by Peter MacCallum Cancer Centre investigators aims to develop a novel treatment combination for this rare neuroendocrine cancer. The trial is headed by Dr Shahneen Sandhu and will test the immunotherapy drug Avelumab in combination with either radionuclide therapy or external beam radiotherapy.

Well done to Dr Shaneen Sandu and the entire interdisciplinary collabaration team which includes Prof Rod Hicks (radionuclide expertise), Dr Richard Tothill (MCC research expertise), Dr Margaret Chua (radiation oncology expertise) and Associate Professor Paul Neeson (immunotherapy expertise).

Medical  News

Hadassah’s Unit for Neuroendocrine Tumors Is the First Medical Center in the Middle East to Receive “Center of Excellence” Status from ENETS

Hadassah’s Unit for Neuroendocrine Tumors at Ein Kerem, headed by Dr. Simona Glasberg, was recognized for its excellent work by the European Neuroendocrine Tumor Society (ENETS). Dr. Glasberg and her multidisciplinary team of oncologists, pathologists, surgeons, radiologists, all have extensive experience in the field. This team makes up the only unit recognized as a center of excellence in dealing with neuroendocrine tumors in all of Israel and the Middle East.

“This is an outstanding achievement, both for me personally and for the unit as a team. This recognition reflects our hard work and uncompromising dedication to our patients,” said Dr. Simona Glasberg, Director of the Unit for Neuroendocrine Tumors at Hadassah. “The unit’s new status as a European center of excellence will enable us to advance and develop patient care, partnerships with leading centers throughout the world in research and clinical work, access to and participation in databases of knowledge, and other possibilities. This puts Israel – and Hadassah – on the global map of leading centers in the field.”

“The numbers of patients are growing steadily each year,” said Dr. Glasberg. “This is not a pandemic, but rather heightened awareness due to early diagnosis thanks to screening and other advanced diagnostic tools. Patients and doctors make note of symptoms that may suggest a neuroendocrine problem, such as diarrhea, blushing, abdominal pain, wheezing, and other symptoms lead to screening that improves a patient’s chances. In recent years there has been dramatic progress in both diagnostic abilities and treatment options. The goal is to improve the cancer patient’s quality of life.”

“It is worth noting that Hadassah’s leadership recognized the need for progress and innovation in this field, and supported this unit in establishing our first-class multi-disciplinary team. Hadassah leadership continued to support the unit during the complex process of applying and achieving the status of “center of excellence” by the European Neuroendocrine Tumor Society,” said Dr. Glasberg.

The criteria for becoming a “center of excellence” are included in a comprehensive report composed by two experts: Professor Gunther Klopel, a leading pathologist in the field, and Dr. Dorit Barton, who was appointed as an external regulator by a company involved in medical quality control on a global level.

The inspection was conducted over the course of a year and included oversight of the treatment of more than eighty new patients who arrived to Hadassah’s Neuroendocrine Tumor Unit, the availability of the most advanced diagnostic and treatment tools in the world (including radioactive analogue therapy for somatostatin, and others), and the highly-qualified multi-disciplinary staff capable of effectively treating many patients and acting as an expert force leading the unit.

Full article.

A Common Classification Framework for Neuroendocrine Neoplasms: an International Agency for Research on Cancer (IARC) and World Health Organization (WHO) Expert Consensus Proposal

A recent publication from the World Health Organization (WHO) has identified that neuroendocrine neoplasms are a large and diverse group of tumors that require a common classification framework.  This is an important step forward for patients with neuroendocrine tumors.

This paper, focussing on the pathology of these tumors, has finally consolidated the information about neuroendocrine neoplasms with a uniform approach. In the past, these diseases were handled by general pathologists or, when specialists were available, they were diagnosed by specialists in different fields of pathology. This resulted in disparate criteria for diagnosis and classification of tumor that arise in different sites of the body. There was a wide gulf between NETs arising in classical endocrine glands (for example pituitary, parathyroid or thyroid) and those arising in other sites where non-endocrine tumors are far more common, such as lung, bowel or pancreas. The criteria applied to NETs of the various non-endocrine organs are also very different; while there has been great progress in classifying NETs of gut and pancreas, lung pathologists were still using the terms “carcinoid tumor” and “atypical carcinoid tumor”.

This landmark paper has emphasized the similarities of neuroendocrine neoplasms throughout the body. It clarifies the importance of a single terminology for well differentiated NETs, and the importance of distinguishing the well-differentiated tumors from the far more aggressive neuroendocrine carcinomas (NECs) that have completely different behavior and underlying genetic abnormalities. It emphasizes that while NETs have some similar genetic underpinnings in their various sites, and that there is a common approach to treatment of these tumors, there is a need for more research to clarify prognostic biomarkers (such as Ki67) and to elucidate the common and distinct genetic and genomic factors underlying the different metastatic capacities of the various types of NETs.

Summary provided by CNETS Canada Scientific & Medical Advisory Board member and co-author of the paper, Dr. Sylvia Asa
Full article published in Modern Pathology.

The Trouble With Health Statistics


Some commonly used statistical concepts are hard to master not only for most patients, but for many professionals as well. Especially when it comes to cancer screening.

A common assumption, when addressing informed decision making in medicine, is that many patients find it hard to grasp statistical concepts, and the meaning of evidence, due to inadequate health literacy. But the assumption might be wrong, or at least oversimplistic, according to a growing body of evidence published in literature in recent years: statistical concepts, and the meaning of evidence, might be still beyond the comprehension of many health professionals, with reflexes that are particularly evident when it comes to cancer screening.

“Many physicians do not know or understand the medical evidence behind screening tests, do not adequately counsel (asymptomatic) people on screening, and make recommendations that conflict with existing guidelines on informed choice” writes Odette Wegwarth, from the Harding center for risk literacy in Berlin, in a recent article published on PlosOne. That research (PLoS ONE 2017 12(8): e0183024) evaluated how providing people with simple evidence-based information affected their willingness to heed their doctor’s advice, often unscientific.

“Around 80% of doctors do not understand statistics even in their field, not even basic concepts like the difference between absolute risk and relative risk” explains Gerd Gigenenzer, who directs the Harding center and co-authored that article. “The basic problem is that statistics is taught in such a way that students often don’t see the connection with medicine. Then as doctors they are subject to the combined pressure of defensive medicine and of monetary incentives”. Gigerenzer has published several books  on risk perception and decision making (including Better Doctors, Better Patients, Better Decisions for MIT press in 2011), and many research articles and editorials to discuss both technical aspects related to statistics and more subtle distortions of the available data.  “Communication about cancer screening is dodgy: benefits are overstated and harms downplayed. Several techniques of persuasion are used. These include using the term ‘prevention’ instead of ‘early detection’, thereby wrongly suggesting that screening reduces the odds of getting cancer. Reductions in relative, rather than absolute, risk are reported, which wrongly indicate that benefits are large.  And reporting increases in 5 year survival rates wrongly implies that these correlate with falls in mortality” he wrote in 2016 in an editorial on the British Medical Journal (BMJ 2016;352:h6967). To counter the imbalance, Gigerenzer proposed a “fact box”, that has been since updated and is available online, juxtaposing all pros and cons of mammography described in simple language, and expressed in natural frequencies.
Read the full article at Cancer World.
In Memoriam


Dear friends in the NET community,

It is with a heavy heart that we have to announce that Katharina Mellar, the long-standing and tireless chairwoman of the Netzwerk NeT, passed away on the 23rd of August 2018.

Her passing away is a great loss for all who knew her. Words fail us to describe it.

Katharina Mellar leaves a void in the Netzwerk, which cannot be filled.

She lived for the Netzwerk, was accessible at all times to answer questions from members, always friendly, helpful and competent. Her knowledge of neuroendocrine tumors was remarkable. Katharina joined countless congresses and impressed the audience with her personal story.

Katharina Mellar developed the Netzwerk with enormous commitment and energy - building it from a base of about 200 members at the beginning of her work up to 1200 members today.

It was a fulltime job that Katharina Mellar did with a lot of outstanding commitment and love. Many patients are deeply grateful for her efforts. The gap she left behind can never be filled by anyone.

„In my life I have - next to my family - the Netzwerk NeT as a special vocation. If I am driven by a mission, I have to fulfil it.“ (Words of Katharina Mellar)

Her happy laughter, her many inspiring ideas, her loving friendship, her support and energy will always stay with us. Our hearts will be forever filled with gratitude for all that she has done for the NET community.

Netzwerk NeT and INCA

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