The Ann Edgar Charitable Trust
NEUROENDOCRINE TUMOUR SUPPORT
She was referred to the Beatson clinic in Glasgow under Mr Reed who is a specialist in Pheochromocytoma and he advised she should see if she could uptake a radioactive isotope which would go to the cancer hot spots and dampen them down. Fortunately Sue was able to uptake the radioactive isotope and would go into the Beatson twice a year for a weeks' treatment in an isolation room as the isotope was very radioactive, The treatment continued for nine years and Sue was able to lead a full life working, travelling doing things now rather than at a later date and bringing up our four children. She had an amazingly positive attitude and would always put others first. Unfortunately in 2003 Sue's health started to deteriorate and after a long and courageous fight she passed away at the end of 2003.
In 2010 a neighbour who is a Professor in endocrinology at Ninewells hospital advised me that it is now possible to genetically test for pheochromocytoma. I advised my four children that it would be sensible to get tested. My two eldest children have inherited my gene but my two youngest a boy and girl twins have inherited their mother's faulty SDHB gene. They both went for full body scans and James the boy twin had three tumours in his stomach removed and he has a tumour in his carotid artery which is not possible to operate on.
Jennie the twin girl has a tumour in her jugular vein and again it is not possible to operate. Both Jennie and James have yearly scans to check the tumours are not growing and that no others have grown.
Jennies' tumour unfortunately started to grow at the end of 2014 possibly due to pregnancy and she had radiotherapy in May 2015 which appears to have been successful.
James has a daughter who has been genetically tested and fortunately does not have the SDHB gene. Jennie has a girl of three and a boy of eighteen months and they are waiting to be tested.
I decided to be proactive and raise money to carry out research into the SDHB gene and fortunately I have a very good friend and neighbour who has helped facilitate the research into the SDHB gene in Australia and Hungary. I look forward to getting some positive feedback from the research and hopefully understanding why the gene causes the problems it does and also a way to help people with the gene in the future.