When we suspect something may not be quite right in our bodies, most of us will make a visit to a doctor or in my case, a dentist to check out what’s wrong. 

And here’s why I am sharing my oral cancer diagnosis story and about our need to be “our best advocates” even if it may feel scary. 

I was not someone who enjoyed my dental checks (like many) but over the years back in 2015 I was told “that some white spots” in my mouth meant I hadn’t cleaned well, and even a biopsy showed “candida” aka Thrush. I was given oral treatments to help. They did not.

In early 2017 my upper mouth was even more sore and irritated, it was suggested by the dentist that I may have an allergy to nickel that was part of the “bridge holding my front teeth.” 

I did not even bother to get tested. 

My upper gums told the story of “something” for me and I asked the dentist “Please remove the bridge”. I just HAVE to know what’s happening. 

That may sound brave, but I was not, I needed to know WHAT was the cause of the overgrowing gums and the soreness on the roof of my mouth. 

The dentist who had known me now for over a year, agreed to remove it and then “we would know”. I admit that was quite traumatic but once done, the answers were not clear. He had me wait for 5 weeks until a follow-up visit. 

That was a long and painful wait.

Action stations all happened at once. My G.P. who finally saw what had been ‘hiding’ under the bridge was so shocked she gasped and wrote a referral for a CT scan. Looking for cancer. Yes, the word that had only been mentioned by me and the health professionals once or twice.

The day after I saw the dentist again and whilst his reaction was more measured he saw (and possibly smelled) how awful the gums were and sent me to an urgent biopsy that day under local anaesthetic.

Friday, May 12 2017. Biopsy done, CT done…told results would likely be back Monday 15 May. That weekend was Mother’s Day on Sunday, and only my husband knew what I was going through. Each time I see a photo from that day, wearing a temporary denture under very sore gums, I see a worried me. With a smile, of a sort.

The first results were fine. But, as I said to the Oral Surgeon, how can these gums be fixed? She said we would talk about it. There was another phone call on Wednesday, May 17, 2017. “Denyse”, said the oral surgeon “further pathology had shown there is squamous cell carcinoma in your gums”. In my mind, I had no idea that SCC could be found in the skin INSIDE our mouths. 

I was shocked but not really surprised. I had known there must have been something nasty going on.

I was by myself when I got the news but my husband came straight home from his volunteer shift as a counsellor, and after a hug and some tears, I went into organisational mode. 

The oral surgeon referred me to a Sydney head and neck cancer surgeon, practising in Chris O’Brien Lifehouse and the next day, despite the suddenness of my diagnosis news, I was examined and then told this….

That the surgeons and team would completely remove all of my upper mouth: jaw, remaining teeth, gums, palate and under my top lip where the cancer had spread…and that my reconstruction inside my mouth would be using my leg’s fibula, some flesh with good blood supply, and skin from the leg as a graft.

I won’t lie that hearing that news was confronting and I had to have a little walk up the corridor with my husband to settle myself a bit, then return to the clinic rooms, and start signing the papers in readiness. 

My proactivity in asking my dentist to remove the bridge got things moving that is for sure. However, I also wonder, now, over six years later, do our health professionals need to be better informed about symptoms of a little-known group of cancers of the head and neck.

In my years of recovery, and I am now well and with no evidence of disease, I became a volunteer Ambassador for then called Beyond Five, which is now Head and Neck Cancer Australia.

In early August I am presenting my story to my local G.P. practice and sharing not only the awareness but how the professionals can be better informed.

In saying all of that, I promote self-referral and “keeping” at it if you or a family member or friend has any of these symptoms.