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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 representatives from ThymicUK attended their 2019 annual conference.
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.