INCA April Newsletter

INCA Article on Unmet Needs in Top 10% of Downloaded Papers in IJC   INCA is extremely proud and excited to share that our open-source article Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals, published in the International Journal of Cancer, is among the top 10% most downloaded papers. Among all work published between January 2018 and December 2019 in International Journal of Cancer, INCA’s publication received some of the most downloads in the 12 months following online publication. INCA’s article generated immediate impact and helped to raise the visibility of the international neuroendocrine tumor (NET) community, as well as the International Journal of Cancer. Huge thanks to the authors of this publication and to all INCA members for their invaluable contribution to the INCA Unmet Needs Survey, which has generated such unprecedented impact. It is incredibly rewarding to see our work recognized by the global scientific community. Delayed GEP-NET Diagnosis Challenges to Be Presented at ESMO GI     INCA’s abstract Survey of Challenges in Access to Diagnostics and Treatment for Neuroendocrine Tumor (NET) Patients (SCAN) – Early Diagnosis and Treatment Availability has been accepted for poster presentation at the ESMO 22nd World Congress on Gastrointestinal Cancer. The Congress will be taking place virtually over the course of four days from July 1st to July 4th. All accepted abstracts will be available online for everyone interested in the field. The World Congress on Gastrointestinal Cancer is the biggest global forum to gather leading gastroenterology, oncology, pathology, and hepatology experts, clinicians, and surgeons, as well as clinical researchers from across the globe. INCA will present the findings in an online poster, showcasing the global challenges in healthcare which patients living with gastro-pancreatic neuroendocrine tumor (GEP-NET) face today. This was made possible thanks to the 1670 GEP-NET patient participants in the SCAN survey, conducted by INCA in the end of 2019. SCAN data clearly outline the significant challenges GEP-NET patients face with early diagnosis globally. The survey findings call for an increase in the availability of NET diagnostics and treatment options, particularly newer, more specialized tools in order to improve early diagnosis. The presentation of the INCA survey results in front of the GI medical community is part of the effort to overcome the leading issue identified by NET patients via SCAN, namely that more healthcare professionals knowledgeable in NETs are needed. ENETS Center of Excellence Patient Experience Survey The European Neuroendocrine Tumour Society (ENETS) certifies and monitors the specialist NET centers globally, also known as NET Centers of Excellence. NET Centers of Excellence are present primarily throughout Europe, but also in the USA, Israel and Australia. In order to monitor and improve the services offered by these centers, ENETS has launched a specially designed Patient Experience Survey which is still looking for respondents from Italy, France and Germany. As a partner of ENETS, INCA has been involved in helping to disseminate the survey via its network. If you have visited a NET Center of Excellence in the past 12 months, please take 10 minutes of your time to help improve the delivery of health services for neuroendocrine tumor patients. You can find links to the three language versions below: in German in Italian in French The questionnaire should take about 10 minutes to complete. All the data will be gathered and analyzed centrally. All responses are completely confidential and anonymous. The data collected will be used for testing and validating purposes only.  Double Award for MEN2B & Me: Ethan in the Charity Film Awards AMEND was thrilled that its short film about young MEN2B patient, Ethan, received a Silver Judges Award and a Gold People’s Choice Award in its category of the UK’s 2020 Charity Film Awards. The Awards were held online and streamed live to TVs around the country during the evening of Tuesday, 21st April. The film, produced by Red Goat Productions, was part of a set commissioned by AMEND about multiple endocrine neoplasia type 2B to emphasize the desperate need for earlier diagnosis in these children, many of whom are born with medullary thyroid (neuroendocrine) cancer (MTC). The average age of diagnosis is currently 13 years old. The best chance for a cure for these children is if they are diagnosed within the first year of their life. Even then, a cancer-free life may still be out of reach. Since filming in early 2019, 14-year old Ethan developed further metastases of his MTC to his liver, lungs and spine. After a long and worrying battle, he has now been placed on a clinical trial of selpercatinib, which has improved his life dramatically so far, and has begun to shrink his tumors. Both Ethan and his family inspire with their positive outlook and their desire to help raise awareness of MEN2B and MTC. AMEND dedicates these awards to Ethan, and to all suffering from MEN2B.   You can view AMEND’s films (including the award-winning MEN2B & Me: Ethan (his own words)) on AMEND’s website APTED Launches Patients Together Webradio in Collaboration With French Patient Groups   In April, APTED joined forces with many patient groups from France in these pandemic times and launched the Patients Ensemble (Patients Together) webradio. #PatientsEnsemble is to broadcast valuable information for and from patients that is critical in these unprecedented times. The radio is in French and reflects topics relevant for the whole French-speaking community from France, Switzerland, Africa. On April 28th, neuroendocrine patient and member of APTED, Pascaline Chassang was invited to share her story on how she copes with lockdown and manages uncertainty with follow-ups and monthly injections. You can listen to the full broadcast here (Pascaline Chassang’s interview starts at the  24-minute mark) CCF Facebook Live on NETs and Nutrition In April, the Carcinoid Cancer Foundation dedicated a special episode of its Facebook Live Series to NETs and Nutrition. Neuroendocrine tumor nutrition expert Leigh Anne Burns, RDN, with more than 20 years of experience as an oncology nutritionist and dietitian answered a great variety of NET patient questions regarding eating habits, proper nutrition & diets and how to maintain them. You can watch the full recording of this 60-minute session here.     New Name for CNETS Canada The Carcinoid-Neuroendocrine Tumour Society of Canada (CNETS Canada) has been renamed and rebranded as the Canadian Neuroendocrine Tumour Society (CNETS), the acronym will remain the same, CNETS. What’s Changing?   The Canadian Member of INCA removed the word “Carcinoid” from its name and replaced it with “Canadian”. It’s a small change, but it means a lot! Today, there is a shift away from describing these tumors as “carcinoid”, meaning slow-growing and “cancer-like“, to the term neuroendocrine tumors (NETs). It is now recognized that “carcinoid” inadequately describes the characteristics of many NETs.   CNETS has been the only Canadian patient-driven organization for neuroendocrine cancer patients, their families and their support team since 2007. The organization believes that introducing “Canadian” in the name, will help to raise awareness of neuroendocrine tumors amongst the Canadian general public, the medical community and funders. NeuroEndocrine Cancer Australia Virtual Let’s Walk for NETs! Campaign Let’s Walk for NETs! is a 6-week virtual walk developed by NeuroEndocrine Cancer Australia to help keep patients, carers, healthcare front-liners and the general public motivated during these unprecedented times. Participants are free to join at any time. The involvement from the Australian neuroendocrine cancer community has been wonderful, with so many participants uploading amazing images of the country as they “virtually” walk around Australia. The distraction and feeling of community that this challenge has created in such distressing times has been a real blessing. To date NET patients in Australia have collectively walked over 7,000,000 steps – the equivalent of walking the entire east coast of Australia! Neuroendocrine Cancer Australia’s website has a page dedicated to the challenge where everyone can view all images and track the progress.   Support Groups: NCUK Piloting New Models of Working The NCUK Patient Information & Support Nurse Specialist, Nikie Jervis, has been working hard to host online virtual Natter meetings each week. This is proving to be a great success and gathering speed each week. NCUK has currently run 12 meetings with 40 more in the Zoom diary, numbers increasing each time! NCUK even has some groups that come together for Super Natters on Saturday. Keeping the community spirit alive is a key focus for us all throughout these times of adversity. We will get through this together and with the support of the global community. The Healing Power of Music Tom Bajoras, Los Angeles music producer and composer living with a pancreatic neuroendocrine tumor, is at work making music. But not in the usual way. The West Coast musician, composer, and producer is seeing setbacks in ongoing projects due to physical distancing. During the gaps that formed in his schedule, he began arranging music to support his and your journey with NETs. Click here to read the full article and listen to Tom’s musical journey through NETs NET Italy Onlus Joins Forces With It.a.net to Support NET Patients Amidst COVID-19 Crisis Despite the hardships Italy faces nowadays due to the COVID-19 outbreak, NET Italy Onlus joined forces with It.a.net, the Italian Association of Neuroendocrine Tumor Physicians to continue the provision of support to NET patients in Italy. Below is a heartfelt letter from a NET patient addressed to NET Italy Onlus: “Dear friends, We do not know each other in person, but we are good friends all the same because we are experiencing together the NET trip and are sharing fears, doubts and uncertainty for our future. I had just the time to accept my new condition as a rare cancer patient and now a new sneaky, invisible and still unknown enemy is menacing my fragile equilibrium: COVID-19 broke into my life, into our lives, and I really do not know how I can protect myself and my family. I’ve noticed that, in spite of all, our country is trying its best to fight this unconventional war, but I and all people in similar conditions have an additional battle to take care of.  What shall I do? I guess I’d better stay home and try to organize my working life from here, but I have no idea how to proceed with follow-ups, injections, etc. Will drugs compromise my immune system towards the virus? Can you help me?” Having received a number of similar requests from the Italian patient community, NET Italy Onlus addressed medical experts to get their valuable opinion on how to properly face the issue since collaboration is key when patient lives are in danger. NET Italy Onlus collaborated with It.a.net to distribute an official document with all necessary guidance enabling NET patients to properly face the COVID-19 menace: no one is left alone here and our medical community is fighting this battle with us.   Pheo Para Care Kits for Newly Diagnosed Patients The Pheo Para Alliance just released care kits for the newly diagnosed with pheochromocytoma or paraganglioma. The organization is providing the care kit for free on the territory of the USA. If you or a loved one has been recently diagnosed with pheo para, you can get in contact with the organization and discuss ways you can receive the kit. The pheo para care kit includes educational information on pheo para and special goodies to help you/your loved ones take care. Pheo Para Alliance would like to especially thank its pheo para phriend Reagan Banks for donating these care kits. Learn more here. The Pheo Para Alliance continues its online webinar series with medical experts in pheo para. Recorded videos from the discussions are available for viewing online. Check out the Pheo Para Alliance website for videos on COVID-19 and Pheo Para and Pheo Para Surgery. Medical News ‘Textbook Outcome’ in Patients Undergoing Resection of Pancreatic Neuroendocrine Tumors In a study reported in the Journal of Surgical Oncology, Timothy M. Pawlik, MD, MPH, PhD, and colleagues found that approximately half of patients undergoing resection of pancreatic neuroendocrine tumors (PNETs) had a “textbook outcome” — a result associated with significantly improved disease-free survival.   The study included data on 821 patients who underwent curative-intent surgery for PNETs between 2000 and 2016 identified from the multi-institutional U.S. Neuroendocrine Tumor Study Group database, which incorporates information from eight major U.S. tertiary hepatobiliary centers. Patients with metastases at presentation, missing follow-up data, missing data on one or more of the individual textbook outcome parameters, grade 3 tumors, or who died within 30 days after surgery were excluded from the analysis.   Read the full article by the ASCO Post   COVID-19 May Lead to Permanent Changes in Oncology Services According to a commentary published in The Lancet Oncology, experts predict that the development of new ways of practicing cancer care as a result of the coronavirus disease 2019 (COVID-19) pandemic will permanently lead to a change in oncology services. “The pandemic has meant a transformation of every aspect of cancer care, irrespective of treatment, inpatient or outpatient, and radical or palliative intent,” James Spicer of Guy’s and St Thomas’ Hospital NHS Foundation Trust in London, says in the commentary. Oncology teams have had to begin adopting new ways of practicing to try and minimize the risk to patients and staff while simultaneously optimizing treatment and care. Specifically, treatment regimens have been changed to reduce hospital visits. Overall, this balance in caring for patients with cancer and combating COVID-19 has led to a paradigm shift, which may become permanent depending on the evaluated impact. Read the full article at cancernetwork   The World Mourns the Death of Irrfan Khan It is with a heavy heart that we must share that Bollywood star Irrfan Khan died of colon infection as a complication of his neuroendocrine cancer at the age of 53 on April 29, 2020 at Kokilaben Dhirubhai Ambani Hospital in Mumbai. In March 2018, he openly shared his neuroendocrine tumor diagnosis with the world via social media and continued to share details about his journey. For this, the NET community will be forever grateful, as raising awareness about this disease saves lives. Our hearts go out to his family and friends. May he rest in peace. The Indian actor was one of the most wanted stars both in India and Hollywood, having starred in Life of Pi, Slumdog Millionaire and Jurassic World. Business Insider has paid homage to Irrfan Khan and highlighted why undetected neuroendocrine cancers are so dangerous. Read the full article here.

 

INCA March Newsletter

The 8th INCA Summit Was Held Online In these exceptional circumstances worldwide, the 8th INCA Summit was adapted to a virtual format and took place on Thursday, April 2nd. Due to the global nature of the organization and to best accommodate membership representatives and partners from various corners of the world, a two-hour webinar session was organized to provide detailed information on INCA’s achievements in 2019 and to present suggestions to all member organizations for future activities to shape the new INCA strategy for 2020 and beyond. INCA President, Catherine Bouvier opened the 8th INCA Summit by acknowledging the efforts of all who continuously dedicate their time and energy for the benefit of the neuroendocrine cancer and genetic NETs community globally. Mrs. Bouvier also showed appreciation for INCA’s respected sponsors: IPSEN, Novartis, ITM and Advanced Accelerator Applications. INCA is incredibly grateful for their continued support, especially during these challenging times. The INCA President outlined INCA’s vision and mission, and key strategic pillars of activity: raising awareness about neuroendocrine cancer and genetic NETs, securing patient access to optimal treatment and care and advancing NET research. INCA Executive Director, Teodora Kolarova presented the most important achievements of INCA in 2019, some of which are: First open-access manuscript, ENETS First Award for Poster in the Clinical Category, INCA’s membership expansion to 6 continents, SCAN, and the increased global impact of NET Cancer Day on its 10th anniversary. Chairs of the INCA Committees in charge of Communications, Research, Access and Membership presented their progress, achievements and goals. What lies ahead? A new focus on non–NEN medical communities, further expanding the INCA membership, organizing trainings on research and clinical trials for patient advocates, more data-driven evidence to be showcased at medical conferences outside of the neuroendocrine medical community, and much more. The INCA Strategy will now be updated with the valuable input from the entire membership of the organization. INCA on COVID-19 The International Neuroendocrine Cancer Alliance understands the gravity of the situation worldwide and deeply appreciates the global cooperation underway in respect to managing the COVID-19 pandemic. INCA fully supports the measures of social distancing taken by the governments as these support the efforts to minimize the impact of COVID-19 over the population and lessen the burden on the healthcare system. In these turbulent times due to the COVID-19 outbreak, some of the key challenges for all patients, including neuroendocrine cancer and genetic NET patients will be: –  How to maintain treatments and follow-ups and to keep contact with their healthcare professionals? –  How to maintain social distancing and continue treatments/disease management? – How to deal with the increasing anxiety typical for NETs, now additionally triggered by the growing uncertainty and feeling of loneliness and isolation? INCA’s response to these will be to provide practical advice on establishing a new routine for communication with the healthcare professionals. The routine will include specific steps and coming up with a new plan for managing the condition. INCA invites all its members and partners to join the campaign and support the communication efforts to better equip neuroendocrine cancer and genetic NET patients in these extraordinary challenging times. #Covid19 #LetsTalkAboutNETs #NeuroendocrineCancer INCA believes it is vital to highlight the support available to you in your local communities and globally. The following resources, collated on INCA website, can provide you with some guidance. First Virtual ENETS Conference The 17th Annual ENETS Conference took place in a virtual format on March 11-13, 2020. Over 350 attendees watched 11 sessions in total, delivered by 46 speakers from all over the world. In the midst of the COVID-19 outbreak, ENETS conducted a top-quality scientific meeting and also made all accepted abstracts available on their website. 362 abstracts were submitted to this year’s conference. INCA was very proud to see Prof. Robert Jensen acknowledge the INCA SCAN survey abstract among the Top 10 Best ENETS 2020 Abstracts – especially highlighting the importance of early diagnosis and recognition of NET experts:   Almost half of patients were initially misdiagnosed (44% [1043/2359]) 27% (640/2359) received a NET diagnosis first  time and 26% (606/2359) diagnosed incidentally Mean time to NET diagnosis for misdiagnosed patients was 5 years Four out of five misdiagnosed patients (81% [847/1042) failed to receive a diagnosis within 1 year A quarter (24% 570/2359) of patients had not heard of NET specialists At the end of the conference, Prof. Dermot O’Toole warmly welcomed the new ENETS Chair – Prof. Marianne Pavel, senior physician and top-tier leader in NETs who has mainly focused on NETs for the last 20 years. Prof. O’Toole highlighted Prof. Pavel’s enormous dedication to the accumulating body of knowledge about NETs, and her exceptional talent of being champion for NET patients. Marianne Pavel thanked Dermot O’Toole for his committed leadership and acknowledged the extraordinary work that he and the ENETS Executive and management team did to conduct the conference virtually in such a short period of time. Looking ahead at ENETS future priorities, Marianne Pavel highlighted the continued focus on scientific work, facilitating collaborations, and building the next generation of NET experts. INCA would like to commend both Dermot and Marianne on their exceptional leadership, patient-driven perspective, and global vision. We are grateful for their partnership and friendship, and look forward to advancing our collaboration to help improve outcomes for NET patients.   The INCA ENETS Joint Symposium will be scheduled to take place later in the year. INCA Members’ News    COVID-19 and MEN Research AMEND has developed a patient questionnaire for people with multiple endocrine neoplasia disorders (GenNETs) who HAVE HAD Coronavirus.  The survey can be completed by patients who have recovered, or by relatives or health professionals for anyone who may sadly have died.  AMEND is making the question file available to anyone on request, so that you can set up a similar survey in your own country.  Please contact AMEND CEO, Jo Grey (jo.grey@amend.org.uk) for more information. CCF Hosts COVID-19: Your Health and Safety Facebook Live Event   The Carcinoid Cancer Foundation (CCF) hostеа a special Facebook Live event on March 30th at 12:00 noon Eastern Time – COVID-19: Your Health and Safety, featuring neuroendocrine tumor (NET) expert Aman Chauhan, MD for an in-depth discussion on the topic. Watch the full video here. NeuroEndocrine Cancer Australia at ENETS   At the ENETS meeting in March, NeuroEndocrine Cancer Australia were pleased to be involved in 6 scientific abstracts, their highest contribution to the European Neuroendocrine Tumor Society (ENETS) to date. Despite ENETS not taking place as a physical meeting, the organizers did a great job of conducting a virtual meeting, and allowing for abstracts and posters to still be able to be promoted. •    GP Education Research – leading planned online modules for Australian GP’s through 2020 and beyond •   CONTROL NETs clinical trial results – finding the optimal treatment to improve disease control in patients with advanced Neuroendocrine tumors (NETs) •    Financial Toxicity – the financial implications on Australian’s living with neuroendocrine tumors •    PLANET Registry – Peter MacCallum Data experience •    INCA SCAN Survey – Assessment of Early Diagnosis •   Nutritional Status and Considerations for Patients Diagnosed with a Gastroenteropancreatic Neuroendocrine Tumor – Nutrition in NETs study funded by NeuroEndocrine Cancer Australia Check here for more information.   UKINETS Chair on Key Concerns for NET Patients The Chair of UK and Ireland Neuroendocrine Tumor Society (UKINETS), Professor John Newell-Price addressed some of the main concerns of the neuroendocrine cancer and multiple endocrine neoplasia communities, which were brought to his attention by AMEND and Neuroendocrine Cancer UK. He shares information that can help improve management of patient conditions in these incredibly difficult circumstances both for patients and healthcare professionals. Working out ways to ensure that patients receive the best quality of care possible during the current healthcare crisis everywhere needs to be a priority. Watch the full video here. Milestone Achievements Announced in NET Cell Line Development   The Neuroendocrine Tumor Research Foundation (NETRF) reports progress in the development of neuroendocrine tumor (NET) cell lines to help eliminate a decades-old obstacle in laboratory research. To stimulate progress in NET cell lines, NETRF established a Cell Line Prize, funded cell line research, and launched a collaboration with a nationally known research institute. Each of these initiatives has succeeded in establishing NET cell lines. When the Neuroendocrine Tumor Research Foundation (NETRF) was established in 2005, one of the obstacles facing NET research was the lack of neuroendocrine tumor (NET) cell lines. Since then, NETRF has funded and initiated projects to generate NET cell lines. Now NETRF is excited to announce three milestones in the quest to establish these essential research tools. “The lack of effective NET cell lines has been a critical concern to NETRF because it limited advancement in the field,” said John Kanki, PhD, NETRF Director of Research. “Today, we are excited to report outstanding, measurable success.” Learn more here. Pheo Para Alliance Patient Education Webinar on Surgery   On April 22, the Pheo Para Alliance will hold a live webinar on pheo para surgery. The Live Webinar Series gives patients and their families an opportunity to tune in and interact with experts on a variety of pheo para topics. Drs. Michael W. Yeh and Masha J. Livhits of UCLA will be the featured experts. Patients and their families will have an opportunity to ask questions. Submit your questions beforehand during the registration process or ask questions live. Register for the webinar here.