ThymicUK is a support and advocacy group for patients with cancers of the thymus gland (thymic cancers) such as thymoma and thymic carcinoma.
Being diagnosed with cancer is difficult. Being diagnosed with a rare cancer poses additional, significant challenges. Thymic cancers are rare. It is highly unlikely that you will know anyone personally who has received this diagnosis and it is unlikely your GP will have other patients with this diagnosis. The experience can feel scary and isolating.
One of our aims is to address the feeling of isolation that can accompany diagnosis of a rare disease. We are a community of patients with thymic cancers, family members and carers from across the UK.Â
We share information and experiences and support each other. We have an active and growing Facebook group and we hold regular meetings in the UK during the year.
Because of the rarity of thymic cancers, the level of knowledge about them across the medical community is limited beyond a few ‘specialist’ doctors and nurses who have had experience of treating more patients. Currently there are no formal NHS wide treatment guidelines for these cancers.
Another of our aims is to help increase the awareness and understanding of thymic cancers across the general public but also amongst the medical community and ultimately to help establish agreed treatment guidance.Â
We are recognised by The British Thoracic Oncology Group and are a member of the BTOG Thymic Malignancies Special Interest Group where we actively advocate on behalf of our members.
We are very pleased to say that, in 2024, the group has launched the Anterior Mediastinal Pathway, a new diagnostic algorithm for anterior mediastinal lesions, with the hope to standardise management across the UK to drive improvements in patient care.
Since 2019, representatives from ThymicUK have attended the BTOG annual conferences to raise awareness of thymic malignancies, promote and advocate on behalf of our patients.
Following a survey on patient experiences, we presented a research poster at BTOG 2023 which won a conference prize.
BTOG 2024 included a session entirely dedicated to thymic malignancies, chaired by Dr David Gilligan and our very own trustee, Marrika Colvin. 5 brilliant presentations and well attended. This is the learning and raising of awareness we want to see and that will make a difference to all patients with thymic malignancies.
It is difficult to access new treatments on the NHS and even privately due to the level of clinical evidence required to support the use of a drug for a particular disease. With a rare cancer there may be an insufficient number of patients to run the kind of clinical trials required to generate the necessary clinical evidence.
Another of our aims is to work with doctors, NICE and the NHS governing bodies as appropriate to address access issues for these rare cancers so that patients can receive more effective and/or safer medicines.
There is little active research into understanding and treatment of thymic cancers, given how few patients there are.
Our ambition is to help facilitate research into thymic cancers through identifying patients in the UK who are willing in principle to share their medical information with research organisations solely for research purposes and with the appropriate consents. Â
Patients can sign up by sending a message on our contact page.