Sarah on her diagnosis of ACC in the trachea, her carbon ion treatment in Heidelberg and why supporting research is important to her.
My name’s Sarah Brigham, and I’ve got Adenoid Cystic Carcinoma (ACC) in my trachea.
So my diagnosis took a little while to come through. It started with me having a cough and getting increasingly out of breath. I’m quite active, and I realised that I wasn’t even able to walk up a flight of stairs without feeling out of breath. So I went to the doctor. Initially I was given anti-biotics - sent away – that didn’t work. They then assumed it was asthma, so I was given all the medication for asthma – that also didn’t work. Eventually an asthma nurse identified that there was a problem and sent me to the hospital and then scans basically came back which told them that it was ACC and we understood from the endoscopy, where they put a camera down your throat, the size of the tumour. That whole process took probably about a year.
So the first treatment I had – the most important thing was to get me to a position where I could breathe because it became clear that I was breathing out of a really small part of my windpipe. So they did something called debulking, and after that I felt cured. I felt I could breathe, I went for a five mile walk the Sunday after, I felt really well. But the reality was that it was still there in the wall of my trachea. So we then explored the option of surgery. Unfortunately, because of where my tumour is, and because of the size of it, surgery wasn’t an option – isn’t an option – because it’s too big. So I then had to start looking into other opportunities and other things that I could do.
Carbon ion treatment
So the treatment option that was available to me because I couldn’t have surgery was radiotherapy. And through my research I realised that for my particular case, the best type of radiotherapy for me to have was carbon ion –because it had a better chance of working. Unfortunately, carbon ion isn’t available on the NHS, so I had to fund raise myself to get abroad to be able to get that treatment. I went to Heidelberg – the University of Heidelberg Hospital for seven weeks, and fund raised to send me over there and pay for that treatment.
The side effects again are similar to radiotherapy, and depend on where you tumour is. For me, it was in my trachea, I had some side effects of struggling to swallow, some loss of hearing – which returned. I was in Heidelberg for seven weeks – I’m now ten weeks on from the last treatment, and I feel really well.
So if I could give myself one piece of advice back at the point of diagnosis, it would be to recognise that this is a huge, life-changing thing, but that actually there is hope – that there are people living with this, and coping with this, and that science is changing all the time, there are cures coming in, there’s new research, and if we can do anything, we can contribute to that and to supporting things like the SGC UK charity – and yeah – don’t give up.