Kirkcaldy woman living with mouth cancer diagnosis urges people to self examine

Barbara Boyd from Kirkcaldy initially struggled to get a diagnosis for her cancer following check ups at both her GP and her dentist after noticing an issue in 2019.

Barbara said: “I had what I thought was an ulcer on my gum. I spoke to the dentist, she couldn’t see anything and she thought I just had ‘bumpy gums’, which are apparently quite common.”

She had two further visits to her dentist and a visit to her GP, who gave her medicine to put on the ulcer. It wasn’t until her nurse practitioner checked over her mouth that a biopsy was undertaken.

She said: “She told me ‘there’s nothing on your gum, but there’s something on your tongue’. Immediately they sent me to Queen Margaret Hospital and a biopsy was done and it turned out it was a cancerous tumour on my tongue.”

Barbara underwent surgery at Ninewells Hospital to remove the tumour and, following the surgery, had to learn how to speak and eat by taking part in speech therapy and exercises. However, further examination revealed that the tumour was larger than originally thought, and she had to receive further surgery.

She explained: “I then had to have what's called a neck dissection to remove my lymph nodes.”

Barbara describes the operation as “horrific” and said that it has left lasting damage to the left side of her head, neck and shoulder. However, she said that she is still fortunate – but she wants to ensure that others receive better outcomes.

“I did everything I was told to avoid having a reconstruction of my tongue. My speech is as good as it’s going to be, but it’s not my voice. I then became involved with a Scottish charity called ‘Lets Talk About Mouth Cancer’. I’ve been working closely to promote self-examination. I’ve spoken to every dental practice and encourage them to have every dentist check everybody’s mouth, not just their teeth, but their lips, the roof of their mouth, the floor of their mouth and their cheeks.”

For Barbara, success is ensuring that as few people as possible have to go through the traumatic operations that she had to.

She said: “My thing is whatever information and education that we can get out there, if it prevents one person from having to get that neck dissection then that would be good.”

Whilst the main focus of her work is preventative, Barbara is also involved with Maggie’s Centre where a head and neck cancer group was established at the centre three years ago. Barbara said it has been a “great success and a great help to those affected by specifically mouth cancer.”

She is also involved with NHS Scotland’s School of Dentistry, where she speaks to dentists and healthcare professionals who might not have had experience of mouth cancer.

Feedback has been positive: “It has been incredible. I tell them about my experiences, I welcome questions. The feedback, the comments and the questions have been a success, because they’re getting it from the horse's mouth.”

Mouth Cancer Awareness month runs for the whole of November.