Hi everyone,
I’ve only posted a couple of times but thought I should say hello properly.
I was diagnosed last August with squamous cell carcinoma of tongue. I started to think my mouth felt a bit odd in April but we were in lockdown and dentists were closed. I am a doctor myself I couldn’t see anything abnormal and was just busy, in July I saw my dentist again nothing to see although my tongue did hurt on swallowing and then in August a big painful ulcer appeared and my dentist sent me to the local oral medicine team who immediately said it was cancer. In hindsight I should have referred my self earlier but I just never thought it could be cancer.
After the scans I remember seeing my MRI and being numb when I was told it was 7cm and spreading in different directions, so the usual treatment temp tracheotomy full neck dissection lymph nodes removed, 3/4 tongue removed and arm flap, PEG insertion followed by chemo and radiotherapy as the margins were tight on histology. One lymph node positive and some peri neural involvement. They took out 8 teeth too, I really missed them when I started to eat. COVID no visitor rules definitely made some of the treatment tougher.
I have found the forum so helpful, knowing other people have got through the tough bits and all the tips on coping. Although my cancer nurse and all the teams have been great, the forum gives the real insights it’s a bit like trip advisor reviews for your cancer journey 
I haven’t been able to return to work and I am now official retired on ill health. It was a combination my speech,fatigue and my concentration/ memory is not what is was. So I am home with dogs, cats and chickens ( love my Swedish flower hens 
) and new poly tunnel for veg and flowers. I had a bit of a wobble coming up to my one year anniversary so I came back to the site and take strength from all of you who are a bit further down the road than me.
Thanks x
Oh Flowerhen, you’ve had a bit of a rough journey. It’s difficult. We know our bodies and you knew there was something wrong but couldn’t pinpoint it. I had a similar journey in that I am a retired vet and my mouth felt wrong too for a month or so. Eventually I had a good poke round and found a swelling with my finger at the back of my tongue. I knew what it was immediately. I’d be a poor vet if I failed to recognise it. My GP and referring consultant were not convinced either but I got my MRI and there it was. There aren’t any pain receptors at the base of the tongue which must explain the late diagnosis. I got mine at T2 with no nodal spread so I was lucky.
I am chasing three years now and I have dealt with wobbles too and two extra appointments to report something that concerned me. Luckily I have an excellent team who look after me.
The fear of recurrence is always there but it gets easier. I always counsel people to get in touch with their CNS if they are worried and not to be concerned that they are wasting clinicians’ time. They are not
I hope you continue to enjoy your retirement. I certainly am and trying to live a full and happy life.
Best wishes and thanks for the update and introduction.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
PS I had to look these up. They are gorgeous
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Wendy. So good to hear from you and that you’re doing so well.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
