I have just been tested for an extremely rare genetic disorder involving a defective gene called P53 (the tumour suppressor gene). I saw that in February, Poannie posted a message saying she too had this syndrome. Are you still on this site Poannie - I would love to hear from you as this syndrome is so very rare. I have both advanced breast cancer and leiomysarcoma of the inferior vena cava (on its own an extremely rare cancer - let alone combined with another primary like breast cancer). My three brothers have recently died from various different cancers, my Dad died of a brain tumour at 44 and out of his seven brothers and sisters, only one lived past 50. I had accepted that my own cancers were terminal but now I am devastated to learn that my lovely daughter who is only 19 stands a very high chance of inheriting this syndrome (if so, her chances of getting multiple cancer are extremely high - 50% before the age of 40 and 90% before the age of 60). I don’t get the results of the genetic testing until January but whereas before this news, I was coping really well with my cancers, now I am terrified that my dear daughter will have to go through what my brothers and I have had to suffer.
Poannie, if you are still here, please post a message - or, of course, anyone else.
Hi Mary. I am so glad to have seen your post. Like you said it is such a rare gene that you can easily feel isolated and alone. I have had the genetics test and am currently going through breast cancer stage 1 grade 3. I’m in my early 30’s. I too have basically had a life of seeing my loved ones suffering from cancer, some still thankfully having survived it, others havent been so lucky. (Some as young as 4 years old). Its a horrible disease that I would not wish it upon anyone. I too have kids…I’m sooo worried about them. They havnet had the genetics test YET, but I would like them to have it soon, but I must admit I’m scared to hear the results. I don’t want them to have the sort of life I had, I don’t want them to see what I have. I feel I havent had a normal life or childhood.
I’m really sorry to hear about your cancer and hope that you are doing well. I have just noticed you posted in 2008 and I really hope you and anyone else who holds this gene replys. God bless you.
As Mary’s post was 2008 if you would like some extra support whilst you wait for replies from other user with this gene please don’t hesitate to give the BCC helpline a call on 0808 600 8000. Here you can share your concerns and talk things through with a trained member of staff who will offer you a listening ear as well as emotional support and practical information. The lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.