Alison on being diagnosed with ACC after going to the doctor with frequent sore throats, and how she managed to continue eating through 30 rounds of radiotherapy.

Hello, my name's Alison and I'm 52 years old. I've got a lovely husband and two older sons and I'm a teacher.

 

When were you diagnosed?

I was diagnosed with adenoid cystic carcinoma. It was an odd sort of a diagnosis... I went to the doctor with a sore neck and a lump in my gland, which I had a lot of sore throats and was losing my voice a lot, which I thought was just due to teaching.

So I went along to the doctors, and he instantly said, “No, that's not quite right. I want you to go across to Coventry Hospital, Coventry University Hospital and go across and have an ultrasound”. 

So sort of two weeks later off I went for my ultrasound, still naively thinking, “Oh, yeah, it's just something very tiny, it will all be fine” and went in for my ultrasound. 

And at that point they found something. And so the gentleman doing the ultrasound said, “Really, we want to do a fine needle biopsy now”. So rather than going in and having a 10-minute ultrasound, I was there for quite a while while they biopsied my submandibular gland. 

At that point, they still didn't tell me anything and I still sort of was thinking, “Oh yeah I've just got a little lump, they'll sort that out”. So I came home and two weeks later went back to get the results from the maxillo-facial surgeon. 

He hadn't got the results at that point, but had to look at my neck and said, “No, that needs to come out”... And there the journey began.

 

Did you have surgery and radiotherapy?

I had a neck resection. That was in August of 2018, and after that, after the neck resection, I had to go and see the surgeon again and that's the time when they actually said the C word. 

It was the first time I’d heard cancer mentioned in the whole diagnosis process. So that sort of hit me like a ton of bricks. And then alongside that came the “it's adenoid cystic carcinoma, which is a very rare cancer and you're one of a very few people that we've ever seen with this cancer”, at which point you feel quite unnerved. 

And I have to say though that the hospital were absolutely amazing. So as I quietly fell apart because I hadn't taken my husband with me. I’d gone for my diagnosis on my own because I was not expecting anything. I was expecting him to say, “Oh, yes, you know, that's a lovely, neat scar and off you pop”. And yeah, so it turned into a completely different journey at that point.

 

How is your recovery going now you are two years out of treatment?

After the surgery, the journey sort of continued and because they couldn't get clear margins around my tumour, I had to have 30 rounds of radiotherapy. 

So that was a very intensive period of going to the hospital every day, having the mask made. I don't think anything ever prepares you for being pinned to a radiotherapy table every day for however long. So it was difficult. And I think it's it's still difficult, because for a long time through the radiotherapy, I was well and I was very well supported. I had a team behind me, the nurse, a dietician and a speech and language therapist. So that really helped me. 

As a teacher, I was going into school. I worked part-time, so I was going in part-time. And as the radiotherapy progressed, I got more tired. So I was removed from the classroom side of teaching and able to work in the office. My employers have been extremely good with that.

I never stopped eating. I think during one of the consultations, there was the mention of tube feeding and PEG (Percutaneous Endoscopic Gastrostomy) tubes and that was enough to make me eat anything. 

There was no taste as lots of people experience. But amazingly, I managed to sort of keep going with blending things and having anything that I fancied eating. 

I'd go in and see the oncologist and the oncologist would say, “What do you feel like today?”.  “Cream cake!”. And it would be like “Go and have two!”. So it was just to keep yourself built up. 

There were regular weigh-ins to check that I wasn't losing weight. 

Eating became a whole new game, really. It wasn't about food tasting nice. It wasn't about food being anything other than something that keeps you alive so that you can continue the process.

The radiotherapy went well until about two weeks from the end of the six weeks, my neck started to become really sore. And that's kind of when the burns started to appear. 

And that, I think, is the first time that work colleagues and people around began to realise that it was more serious than they’d thought. And I found that quite difficult because going into school, obviously working with small children, it was suddenly apparent that I was ill and different to how they'd known before. 

My voice had gone and things had changed. I'd had teeth out as well. I had to have some teeth out and some slight surgery to my jaw to remove a small part of my jaw before the radiotherapy. 

So there was sort of bruising and lots and lots of skin burns. And that's where I would give my advice because I knew it was coming, they’d well prepared me for that sort of thing. 

But my vanity got in the way of it. And when the nursing service was saying, “Right, here's your big greasy bandage, let's put that over your burn now”. I'd got lots of creams. I'd got all sorts of different creams that I was working with. And they said “We’ll wrap you” and we’ll offer you these things. 

And I said “No, I don't need that. I'm absolutely fine. You know, I've got my nice cream. I'm going to get by”. And then after I'd finished my last session, I gave in. And that was the day when I said, “Yes, I want the bandage, I want it all on now” because my neck was just sort of falling to pieces.

So it was a very long, difficult time with the radiotherapy. Going in every day, knowing what you were going for, sitting in the cancer ward, looking at people who were very ill and feeling a bit of a hypocrite because you still feel fairly OK. 

And I think that's still where I'm at really with my cancer is that I still am feeling OK most of the time, but it's there every single day and even at two years post-diagnosis, it's there every day. And there are all sorts of little triggers like watching things on television. When somebody tells their story, it takes me right back there.

 

Did being diagnosed with a 'rare' cancer make things more complicated for you?

When I was diagnosed with a rare cancer, I started to do some research and obviously realized almost straight away that there was not a lot out there to look at. 

And all of the things that I was looking at were telling me that this was a recurring cancer and this did not have a good prognosis. And at some point, this was coming back and all those very negative things that really I should have stepped back from, but instead of that started spiralling down into. 

But again, as I say, the Macmillan nurse service were really good for me. They helped me through that. And also I did some research and met up with some people from your group and from the salivary gland cancer group.

I didn't have the guts to speak to people yet, but I like reading the blogs and different people's stories and looking at different treatments and things like that. 

And it came up on lots of different threads from different cancer support groups about the Christie Hospital in Manchester and the research being done there. So that was something that greatly interested me, because regardless of how my story goes, I want to be a part of helping everybody with their stories.

And so I spoke to my oncologist who contacted Dr Metcalf and then off we went to Manchester and I've had my tumour biopsied and oh, I've had it all sliced and diced. And it's done a lot of journeys. 

We call it Trev, and we sort of chart where Trev's going at the moment. So he's in a lot of different places. He went over to America. So there he was profiled. And fortunately or unfortunately, at the moment, there isn't a clinical trial for the profile that my tumour has. But obviously, it will help towards, you know, maybe in the future with another clinical trial. 

And I will be there ready and happy to help if anything helps anybody else, and builds a research base for this adenoid cystic carcinoma will be very happy.

 

What can we do to help?

I think I found it hard to talk about cancer. I found it hard to talk about my cancer because as soon as I do, it takes me back to my family life and the things I might miss. 

So I've done a lot of reading, I find blogs very useful. I found that even though I have submandibular cancer, nobody really explained that. They just told me it was my salivary gland and it was going to go and those sorts of things. 

So recently I've been looking at different sites to find out what exactly my gland was doing before it left me and what part it was playing, because nobody had explained that. There was the explanation that my saliva was going to be very sticky and that I may not produce saliva. 

I'm very lucky, I obviously produce it still on my right side, so that makes life a lot easier. But I have obviously lost it on my left side and two years on you still choose what you can eat and I drink an awful lot of water and “Cheers!”. 

It goes everywhere with me and there are certain things that I still can't taste, which is something that's difficult. And I know something that me and my husband discuss a lot because he'll eat things and I'll go, “Um no, we're not having that again”. And he'll go, “But I enjoyed it'. And it's sort of, if it's a subtle flavour, I just don't get anything at all.

I think anything that gives really easy, quick acknowledgement of what you've got, but also like on the website, there are diagrams now that are very simple, where it showed you where the gland was and where other glands were, because obviously, when I look up onto different websites, everybody mentions different very scientific names for things. And you don't necessarily know where to locate that on your body. 

So it's those sort of simple things that I've looked for more and more. And then as questions have arisen, you can go back on there and there's just the conversations like this that open things up to different people, because, as I say, I haven't attended a face-to-face meeting because I felt that I'd cry or I'd be upset. 

And other people always seem to be so much worse than me. And it's that kind of thing why you feel a bit of a fraud and you don't want to inflict the fact that you feel sad on somebody else who is undergoing treatment or who has a much more difficult diagnosis.

 

Do you have one piece of advice for someone with a new diagnosis?

My biggest piece of advice, if someone has been diagnosed with ACC or any rare cancer, is to start talking about it and to start asking about it, and start looking at clinical trials, and looking at the future, and thinking about a day at a time. 

But also, there was a lot of talk of mindfulness which I thought “Uff, I'm not bothering with that. That’s absolutely fine. I'm absolutely fine”. 

But listen to people, listen to the advice they're giving.  Do the day by day. But keep asking and keep looking forward, keep looking for that next bit and look for the bits that you can help other people with. 

And be honest, when you've had bad days, be honest with people, because certainly at the beginning and certainly after the radiotherapy going back to work, I wasn't honest with people and you kind of jog along and then you hit a wall. So talking, talking truthfully.