Biomarker testing is used to identify changes in the cells that drive a cancer to grow and spread.
It plays a vital part in helping to find the best treatment options for people diagnosed with non-small cell lung cancer.
Everyone diagnosed with non-small cell lung cancer (NSCLC) – especially lung adenocarcinoma – should have comprehensive biomarker testing done on their tumours to look for oncogenes (or genetic abnormalities) in their lung cancer cells.
The results of biomarker testing can show whether targeted therapies or immunotherapies should be included in a patient’s treatment options.
A clear explanation of the ways in which these these genetic mutations, changes or abnormalities drive specific types of NSCLC is provided by our US member organisation, Go2 For Lung Cancer, and can be found here.
The worldwide lung cancer advocacy community now has many groups with differing aims, objectives, and agendas. Therefore the GLCC has created this resource, a database of groups and organisations dedicated to meeting the interests of people whose cancer has specific, targetable biomarkers.
We aim to ensure this database is current and comprehensive, and welcome details of biomarker-driven NSCLC groups not listed here. Please contact us via: glcc@roycastle.org
Biomarkers (or oncogenes) with advocacy groups include:
ALK+, EGFR+, BRAF, KRAS, Exon20,MET, RET, NTRK and ROS1.
Click on the links above to visit the appropriate biomarker group page.
In addition to the biomarker-specific groups listed within this resource, there are other organisations and groups offering information and support for people affected by biomarker-driven lung cancers. These include:
Ruth Strauss Foundation (UK based)
The Ruth Strauss Foundation was set up in memory of Ruth Strauss, wife of former England cricket captain, Andrew Strauss. The charity supports families facing the death of a parent to cancer and funds research into lung cancer not related to smoking.
Has links with Roy Castle Lung Cancer Foundation, Asthma + Lung UK, and Lung Cancer Nursing UK.
https://ruthstraussfoundation.com/
Oncogene Cancer Research (UK based)
This charity has the mission is to increase the life expectancy of people living with oncogene-driven cancers that originate in the lungs, with a view to one day finding a cure. https://www.oncogeneresearch.org/biomarker-groups
Oncogene-Driven Lung Cancer Patient Alliance UK
The Alliance comprises UK patient-focused support groups for lung cancer patients with an actionable mutation. Members of the alliance are:
The purposes of the Alliance are to:
- share best practice
- optimise resources
- carry out joint collaborations
- support the formation of patient support groups for all actionable mutations
Other information, support groups, Facebook groups etc
Several GLCC member organisations offer information about biomarker-driven lung cancers or care pathways associated them, such as targeted therapies (or personalised medicines) and immunotherapies. They may also provide community support, or links to such groups.
Some of our members also provide links to private or closed Facebook groups.
Here are some examples:
Longkanker Nederland Closed Facebook groups (Netherlands)
The general Facebook page of Longkanker Nederland is a good place to meet fellow sufferers. This public page is accessible to everyone and you can go here for news and experience stories about lung cancer and about the organization Longkanker Nederland.
In addition, there are 12 closed groups that people can join. These groups are not public and messages can only be read and posted by members of the group. Please note: some of these closed groups are not specifically related to oncogene-driven lung cancers, but all offer support to people affected by lung cancer.
- Lung Cancer Patients Netherlands (for everyone with lung cancer) – only for patients
- Young people with lung cancer (up to approximately 55 years of age) – for patients only
- Family or survivors of someone with lung cancer – only for family
- EGFR mutation in lung cancer – for patients only
- ALK/ROS1/MET or RET translocation in lung cancer – for patients and families
- Immunotherapy for people with lung cancer – for patients only
- Small Cell Lung Cancer (SCLC) – For Patients and Families
- Super young and yet lung cancer – only for patients
- Lung cancer could happen to you – for patients and families
- BRAF mutation in lung cancer – for patients and families
- KRAS mutation in lung cancer – for patients only
- HER 2 mutation in lung cancer – for patients only
Group administrators
Longkanker Nederland facilitates all groups. The NFK office is the administrator. In addition, each group has patients as co-administrators. They welcome you and also give advice as experienced experts. There are also two relatives administrators.
Lungekraeft Patientforeningen (Denmark)
Not a biomarker / oncogene group – our member organisation in Denmark.
On their website, the Who can help? section offers support.
Getting lung cancer is experienced by most as being put in a state of emergency. The questions are many and both of a practical and emotional nature. Fortunately, there are many who can help you answer your questions. Get the overview here.
Do you need to talk to someone who understands you?
Then contact the Lung Cancer Patient Association or the Norwegian Cancer Society:
- The Lung Cancer Patient Association, call 4016 2335
- The cancer line at the Norwegian Cancer Society, call 8030 1030 (open 9-21 on weekdays and 12-17 Saturday)
- Your local cancer advice at the Cancer Society
Lung Foundation Australia
LFA offers several information resources focused on biomarker-driven lung cancers, particularly in their Genetic Testing section – https://lungfoundation.com.au/resources/genetic-testing-in-lung-cancer/
The Foundation also provides links to counselling services and lung cancer support nurses.
Cancer Aid (Australia)
Not an oncogene / biomarker lung cancer group, but a service that provides aid and support for people in Australia who have cancer.
CancerAid is a free cancer management app for people living with cancer and their carers. In the app, you can monitor treatments, find reliable resources, manage side effects and read other people’s experiences.
Oncoguia (Brazil)
As with other GLCC organisations, the Oncoguia website offers information about genetic testing of lung cancer and the various treatment options. It also provides resources for people diagnosed with lung cancer wanting to learn more about the condition and support services available.
https://www.oncoguia.org.br/cancer/cancer-de-pulmao/
Alcase (Italy)
Alcase offers information resources, with discussions of biomarkers and how they can drive lung cancer tumours. Also offers links to patient forums and support groups.
Esperantra (Peru)
Similarly, the Esperantra site offers links to information resources and patient support networks.
https://www.esperantra.org/programas-de-apoyo-2/
CancerCare (USA with international reach)
CancerCare of the USA is also among those member organisations to offer information resources regarding biomarker-driven lung cancers.
https://www.cancercare.org/publications/94-lung_cancer_new_tools_for_making_decisions_about_treatment
IASLC (International Association for the Study of Lung Cancer – US-based with global reach)
Numerous information resources for people with biomarker-driven lung cancer, including:
The Knowledge Bank (Sweden)
Acces via Lungcancer Foreningen www.lungcancerforeningen.se/om-lungcancer/
and Regional Cancer Centre website: https://cancercentrum.se/samverkan/
Not a patient support or advocacy group, but a useful overview of diagnosis and treatment of lung cancer, with clear information about targeted therapies and immunotherapy options for people with appropriate biomarkers.
https://kunskapsbanken.cancercentrum.se/diagnoser/lungcancer/vardprogram/lakemedelsbehandling/
Young Lung Cancer Patient and Caregiver Group (Private Facebook group, open to people with lung cancer diagnosed under 50)
Not biomarker-specific but useful resource.
Young Lung Cancer Patient & Caregiver Group (Diagnosed at 50 or younger)
From their website:
LCNM was established in late 2018 by two medical specialists – Dr Anand Sachithanandan, a cardiothoracic surgeon and Dr Tho Lye Mun, a clinical oncologist – and officially launched on World Lung Cancer Day (1st August) 2019. A not-for-profit disease-centric NGO, LCNM is dedicated solely and exclusively to addressing all aspects and all stages of lung cancer here including preventative (tobacco control) strategies, screening of high risk individuals, diagnosis, staging and treatment with both a curative and palliative intent.
With a multi disciplinary network of highly trained medical specialists from the public, academic and private healthcare sectors, and allied healthcare professionals including dietitians, pharmacists, physiotherapists and psychologists, LCNM seeks to provide a holistic and comprehensive approach to improve outcomes through advocacy, education and awareness for both the public and doctors in primary care. This is reflected in the Society’s tagline “Conquering Lung Cancer Together”. The Society seeks to promote evidence-based scientific recommendations in an easy-to -understand manner, to help patients & their families, doctors and other caregivers better navigate their cancer journey. Additionally, LCNM aims to destigmatise the disease, debunk erroneous myths and misconceptions surrounding lung cancer and its treatments, and promote credible local research.
