Toms’ beating the odds
Tom was 19 years old when he began having symptoms at the end of 2012. He had increasingly bad headaches, nausea, vomiting and eye pressure/sensitivity. We didn’t think it was anything serious so Tom began going to the GP to try and find out why he was so sick all the time.
January 18th 2013 Tom had been in bed sick all day. After speaking with his mum about how awful he felt and that his symptoms seemed to be worsening, they decided to go to the emergency. The attending physician took one look in Tom’s eyes and could see severe oedema and sent him for an MRI immediately. The doctor returned and gave Tom the horrific news that he had a very large brain tumour the size of a golf ball and that he needed brain surgery urgently.
Three days later he underwent a craniotomy at Epworth hospital. They removed all of the visible tumour. We waited three days for the pathology results and it was Glioblastoma Multiforme Stage 4. One of the most aggressive forms of brain cancer there was. This was the day our lives changed forever.
Tom was given a life expectancy of 12 to 18 months with treatment. And far less without. So he embarked on his treatment journey. Six weeks of radiotherapy simultaneously with chemotherapy and a clinical trial. Things were looking up! Unfortunately, the treatments didn’t work and his tumour returned in August 2013. He only had a couple months to live. As a last ditch effort his oncologist put him on one more trial. And I’m so thankful he did, because it saved his life.
December 2013 we had the best Christmas. Toms’ tumour had shrunk. The trial was working and continuing to reduce his tumour. Every MRI it kept getting smaller and smaller and we were more grateful each time. Tom continued this trial and chemotherapy for 1.5 years. Until the trial started having a side effect on his vision. It was decided that considering his tumour was stable, he would have a break from treatment to let his eyes heal.
We braced ourselves for tumour regrowth but it never happened. Tom has been stable since. January 2023 will mark ten years since his diagnosis and he lives each day to the absolute fullest. He has accomplished everything a normal person would and more. We got married, had a beautiful wedding and honeymoon, had two gorgeous little boys and so much more.
Tom is in the less than 0.71% of people who survive 10 years with GBM.
He has such an incredible story that we hope brings hope to those who are facing a similar horrific situation.
Peace of Mind Foundation helps patients like Tom through immediate, practical support. Services include advocacy assistance to access government and financial assistance, support workers, community events, retreats, counselling and support groups.
ABOUT GBM’S
Glioblastoma (or GBM for short) is a fast-growing brain tumour and the most common malignant primary brain tumour. Glioblastomas are generally located in the cerebral hemispheres of the brain but can be found anywhere in the brain or spinal cord. Glioblastomas are made up of rapidly dividing cells, have numerous blood vessels and often contain necrotic (dead) cells in the centre of the tumour.
Brain cancer is deadly. Survival rates are low.
5-year survival rate of prostate cancer has increased from 60% to over 90%. Breast cancer survival has increased 72% to over 90%. The 5-year survival rate for brain cancer has increased from 21.2% in 1986, to only 22.3%. (Australian Institute of Health and Welfare 2021. Cancer data in Australia. Cat. no. CAN 122. Canberra: AIHW.)
For some types of brain cancer, survival is much lower. For glioblastoma (GBM)– the most common primary brain cancer in adults – only 5% of people survive 5-years post diagnosis. (Australian Institute of Health and Welfare 2017. Brain and other central nervous system cancers. Cat. no. CAN 106. Canberra: AIHW.)
You can help patients like Tom by donating to Peace of Mind Foundation.