da da da daaaa my story

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Many years ago in the mid 60's and before I was born, my mother was struggling with an unknown health complaint. During her pregnancy with me she was diagonosed with carotid body cluster and secondary malignant tumours. She had an operation to remove her carotid body tumours and effectively lost her voice. She did regain some strength in her voice about 5 years later, but it was painful for her to speak, and she couldn't speak for very long. She was ill for a while and then went into remission. 

When I was 12 she got secondarys and became ill again. She struggled with cancer and had many operations and treatments but sadly she died 12 years later in 1992. 

About 3 months before she died my brother who was in his early 20's was diagnosed with a carotid body tumour. He too became ill with malignant tumours and also had to endure many treatments. Sadly he too died in 1999.

Before my brother died he fathered a baby. His widow approached the Guys Cancer genetics department about 3 years ago to request that my brother's son be tested for faulty genes that cause paraganglioma's. I then received a letter inviting me to be tested. I went along and discovered that I had a faulty SDHB gene.

I then had a couple of scans to check me for paraganglioma's and one was discovered next to my inferior vena cava. It is not secreting anything, so the Guy's team have decided to monitor it, and see if it is growing or not. I will be returning to Guy's in December for more scans and tests to see if it has grown or not. 

That is my paraganglioma story. It has had a big impact on my life, because for many many years I was very sad and griefstricken. I am happy to say, that despite losing people I love, I am a happy and healthy person now. I am not particularly fearful for my future. I feel that I am in safe hands, and I feel positive about future. Thank-you for reading my story