Barry on having ACC in the trachea, how to navigate the NHS, and how he found being part of SGC UK transformative.
On treatment for ACC in the trachea.
My name’s Barry, and I was diagnosed in August 2014 with an ACC tumour in my trachea, in my windpipe, right down at the bottom, just above where the windpipe branches to the lungs.
It was removed during a large operation in the September of 2014, and I had radiotherapy at the end of that year – 32 sessions – and since then I’ve been absolutely great.
Advice when you’re first diagnosed.
If I had a time machine and could go back and give myself one piece of advice when I was diagnosed, it would be don’t panic. A lot will happen – a lot is going to happen – you can’t predict at the beginning what those things will be. ACC and salivary gland cancers are complex – and they’re very rare. Not every doctor in every hospital knows exactly what to do straight out of the gate when you walk in.
So you have time. ACC is a slow growing tumour, so nothing happens right now – you don’t have to make any fast decisions. You’ll want to get information. You’ll want to understand everything that people are telling you. That takes a little bit of time and you can sit down and plan with your doctors the best treatment for your tumour in your location – and the best way through the treatment.
Being an SGC UK member.
I’m not a joiner of groups and clubs and support networks. I tend to be resilient and self-dependent and I don’t generally look for support from groups of other people. And then I thought – oh right one of these groups might be quite interesting to go to – just to talk to a whole bunch of other people with exactly the same tumour type as me. So I went along, and it was transformative – it was fantastic.
When you go into a room full of other cancer patients who have exactly the same thing as you, you don’t have to explain anything, you don’t have to say “oh well, a few years ago I had this “– we’re all in the same group together – and that was very – I hate to say it that was very comforting – and very supportive.