After suffering from headaches and then double vision my optician referred me to the hospital where I had my first MRI. Later that week I was diagnosed with a PTPR. This specific brain tumour is very rare and therefore extremely difficult to treat due to the lack of funding for research.
"Most research effort and funding is focused on common cancers. Brain tumours constitute only about 2% of all cancers, yet there are around 150 types of brain tumours. Ten most common types account for more than half of all brain tumours. Consequently, many rare brain tumours receive little funding and, as a result, relatively less progress has been made in understanding of the natural history and underlying biology of these tumours. Although for the society rare tumours are relatively ‘small problem’ for those who have them, they are a 100% problem. Papillary tumour of the pineal region (PTPR) is one of those rare brain tumours. As operating on these tumours requires special expertise, I see patients with PTPRs and I am determined to help making progress for patients with these and other rare brain tumours." Mr Thomas Santarius MD PhD FRCS(SN)
...I underwent an initial biopsy operation in 2012. Followed by surgery to remove as much of the tumour as possible in 2013. Then I had to have a further operation in 2014 to remove the regrowth, this was followed by 7 weeks of Radiotherapy treatment at Addenbrooke's Hospital.
I am so grateful to my consultants and everyone who works at Addenbrooke's Hosptial to make a difference. This fund has been opened to further the research into rare brain tumours such as mine.
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