Emma’s Tongue Cancer Charity was established in 2021 in honour of Emma Butler, pictured at left with one of her family’s dogs, Harry.
Emma was born in Bradford, England, in 1986 and dedicated her life to the passionate pursuit of education and healthcare, graduating from the University of Wollongong as a Registered Nurse, before entering the mental health field with her first role at Bloomfield Hospital in Orange, NSW. Emma continued working as a mental health nurse for several years before pursuing a Graduate Diploma in Education, with the intent to move into primary school education, a lifelong passion. While pursuing her graduate diploma, Emma continued to work in the mental health space.
Emma was diagnosed with Stage III squamous cell carcinoma of the tongue in June 2020. The diagnosis came as a shock to Emma and her family as Emma did not fit any of the traditional risk profiles for the disease. Squamous cell carcinoma of the tongue usually affects males over the age of 60 with a history of heavy alcohol and tobacco consumption, however the rise of tongue cancer diagnoses in women in the 20-40 years of age bracket with no risk factors has increased by 300% in the last 30 years.
Emma underwent a highly invasive surgical procedure at St. Vincent’s Hospital in Sydney, known as a hemiglossectomy, the surgical removal of half of the tongue, with the missing half of her tongue reconstructed from her left arm. This is a very involved and demanding surgical procedure and takes up to 13 hours to perform. Emma was also further treated with chemotherapy and radiotherapy as part of her treatment.
Emma’s cancer was successfully removed and Emma recovered well from the surgery, however in late November 2020 the cancer recurred and began invading the remaining half of her tongue while spreading into Emma’s throat.
Despite immunotherapy and chemotherapy, in late December 2020 Emma was hospitalised at St. Vincent’s Hospital with breathing difficulties. Emma and her family were informed that her condition was deteriorating and that further surgical intervention, which would result in the removal of her entire tongue and larynx, would not be of benefit. The result of such a surgery would render Emma unable to talk and would also not prevent the cancer from coming back. The decision was made to transfer Emma to palliative care and Emma’s family was informed that she had a life expectancy of between 6 weeks to 6 months.
Emma was discharged from hospital and returned home to be with her family, however in January began deteriorating again and started experiencing further breathing difficulties.
On February 1st, 2021, Emma was taken to Dubbo Health Service for investigation of abdominal pain and breathing difficulties. These were both caused by the cancer due to carbon dioxide buildup as the cancer by this point was affecting Emma’s ability to breathe. While in hospital, Emma’s condition further deteriorated and despite excellent care from the nursing and medical staff, Emma passed away in hospital. Emma was surrounded by her family and passed peacefully and comfortably.
Emma’s Tongue Cancer Charity was formed to raise awareness of tongue cancer and other rare cancers, and bring knowledge to the community along with enabling medical professionals and those involved in clinical care to effectively diagnose tongue cancers earlier in their clinical course. The leading cause of mortality within individuals diagnosed with tongue cancer is late diagnosis, with most diagnoses being made during Stage III or IV of the cancer’s progression. Emma was diagnosed in Stage III.
It is our wish and the aim of Emma’s Tongue Cancer Charity to further Emma’s legacy by pursuing her passions of healthcare and education, and to aid in the earlier diagnosis of tongue cancer and other rare cancers. Every early diagnosis gives the best chance of survival and allows for medical interventions to start earlier.
Please visit our resources page for further information on tongue and mouth cancers, and should you wish to contribute to the work of Emma’s Tongue Cancer Charity, please feel free to visit the Donate page.