"Familial BAP1 genetic fault testing"

I have a history of different cancers in my family, my father died of mesothelioma in 1989 when I was 24 years old.  He had mesothelioma, a cancer caused by asbestos which he had worked with.

My brother died of cancer in 2008 after being treated for cancer of the eye which spread to his liver, he was 48 years old.  My sister died within two years in 2010 of mesothelioma, she was 52 years old.  In 2010 I also lost my mother, who had rectal cancer and dementia.  

I look back on these two years which were filled with sadness and grief and wonder how I actually managed, but I did have my own family, husband and work to think about they all helped me, along with my siblings, to get through this traumatic time.

It was shocking to me watching my father shrink in front of us from a fit and healthy man in his late fifties to become a shadow of himself. My sister was admitted to emergency after months of illness in 2008. I visited her when she had not long come out of intensive care.  When I was visiting, she was given the heart breaking news that she had mesothelioma.  This was horrific to her as we both knew mesothelioma was terminal the same as my father had. She asked me to phone my brother and three sisters to tell them her prognosis.  These were and still are the most agonisingly sad phone calls I have ever had to make.  It’s actually indescribable how awful receiving this news was and having to share it with my siblings.

My other sister died in 2022, after recovering from breast cancer it was found that she also had mesothelioma.  She was weak so only lived a few months after her diagnosis and was 68 when she died.  She was the eldest of the family, ten years older than me.

There are four of us still here out of seven children, I’m the youngest along with my twin and have an elder sister and brother who is the eldest now at 68 years old.  We have always been a close family, having our ups and downs as is natural but we have lived with the knowledge that any one of us could have mesothelioma. We have all carried on with our family lives, I wouldn’t say living in fear as we are all just glad to be on this earth and making the most of our lives.  Though we weren’t living in fear, the dread was still there.  

It didn’t come as a shock to me to find out there was a chance that cancer could be connected to our family’s genetics.  My father’s side of the family have had a cancers too.  Finding out there is a familial genetic fault called BAP1 at least gave me some hope that if I did have it, I would be tested for different types of cancers before I was aware of symptoms.  But I was dreading finding the results of my blood test, in case it was found I had it.  I was actually more concerned for my two boys and their families.  I just didn’t want to have to tell them they could be more susceptible to certain types of cancers.  

I am absolutely delighted I was tested and don’t have the genetic fault which means I don’t have to have that conversation. I actually feel I have a new lease of life, it’s such a fantastic feeling!  This is quite a long message but it did ask for my story so I thought I’d start from my dad who was a hard working man raising a big family.

I’d like to thank Dr Davidson at Queen Elizabeth University Hospital in Glasgow for giving me my blood test when I took my twin sister to have her test there.  I’d also like to thank Kirsten, Principal Genetic Counsellor at Ninewells Hospital, for her video appointment with me who  prompted getting my results from Queen Elizabeth Hospital for me.  Both went above and beyond my expectations of what was going to happen from my visit, with Dr Davidson even getting my blood test, the nurse was so good and to my video call with Kirsten who was so empathetic and actually had me laughing when she phoned me with the results.  I was on cloud nine when I came off the phone.

Thank you also to all involved in working with genetics, it’s such an amazing job you all do with the research for our future generations.