I was diagnosed with a stage 4 Osteosarcoma in my right knee aged 19. It had spread to my lungs and the tumour was the size of a tangerine before it was found. I had to have my right leg amputated above the knee and secondaries removed from my right lung. It was difficult treatment and a new protocol that they hadn’t used in our hospital before. One of the chemo drugs had me hallucinating which was interesting and the ‘antidote’ had me wee all different colours which was also interesting in a different way. 😂.
That was in 1999-2000. Fast forward to 2009 and I’m a mum of three. My son got a lump on his temple which was diagnosed as Rhabdomyosarcoma. It was after this that we were referred to genetics and found out that me and Coby at least had Li Fraumeni Syndrome. Coby was 3 when he was diagnosed and he’s 13 now so he’s doing great. He’s not without issues, he has sensory processing disorder and suffers badly with anxiety but from a cancer viewpoint he’s done amazingly well.
We had not long known about the LFS when I found a lump and was diagnosed with my first breast cancer. My treatment started less than three weeks after Coby’s finished. It was during this time that we pushed for the girls to also be tested. My argument was if they don’t have it I can relax a little and if they do nothing changes. Both girls have it also. They are 12 and 9 now and neither have been poorly. All three of them have quarterly abdominal ultrasounds but not other surveillance although I do keep pushing for that also.
My other four children don’t have LFS which is obviously fantastic for them. None of them know about the LFS yet as they don’t need to deal with that shit just yet, I want them to be innocent from it for a while longer. I really don’t know how or when we will tell them or how they will cope with it. Hopefully they will take power from the knowledge and hope from the fact I’m still here after three cancers.