Dawn shares her story of being diagnosed with unknown carcinoma in her left sublingual gland

Hi, I’m Dawn, my diagnosis was in 2014 and I was diagnosed with an unknown carcinoma in my left sublingual gland.

 

Tell us how your diagnosis process began

So I'd had a lump in the floor of my mouth for three or four years beforehand and I'd been to a walk-in clinic once and they gave me antibiotics and said “Take these and if it doesn't go away come back”. 

But it was one of those things where I thought “Ah, yeah, I must go back, I must do something about it” and the months and years passed and I didn't. So I just happened to mention it to my dentist and say “Can you just have a look at this” and straight away he said “I’m going to refer you just to get it checked out” and I remember saying to him at the time “It’s not mouth cancer is it?”. And he was like “Well, there's lots of things it could be so let's just refer you” so that was where my journey started — thanks to my dentist.

 

Tell us how you were eventually diagnosed 

So I eventually went for scan, I think on Christmas Eve. Waited until January, and they said after that scan “Right we've decided we're gonna remove the lump. But it's not urgent so we'll put you on the waiting list, and we’ll be in touch”.

I think I heard in the February, that they wanted to remove the lump but they couldn't fit in and I was led to believe it wasn't urgent. So had the lump removed at the beginning of April 2014 and then it went off to be tested and nobody seemed to be able to come back with an answer as to what it was. So I went for a check-up and they said “We haven’t had any of the results yet” and then I went for another check-up and it was healing quite nicely.

They still didn't have any results, at which point I got a bit upset and said “Look this has been quite a while now”, and my consultant said “Well if you go for coffee, I’ll phone the lab and see if I can get some answers, come back regardless, just come back”. And as soon as he phoned me and said “Are you still around, can you come back in?” I knew.

 

Tell us about your surgery

So from that point, everything absolutely rocketed. I went to the PET CT scan and they couldn't find anything else anywhere in my body, so they knew that they were planning for just the sort of excision. 

And what they needed to do to get the clear margins around the tumour; they needed to take the floor of my mouth right up and part of the jaw bone, and then round and part of my tongue as well.

And then obviously that's quite a large part of my mouth, so I had to have a forearm free flap with a patch of skin and a vein or an artery from your arm, and use that and put it into the floor of your mouth to fill that gap.

I also add a neck dissection to remove lymph nodes. I think that was in the region of eight to ten hours. I had that treatment at Northwick Park, in Harrow. And then I was in hospital for, I think, six or seven days. 

They obviously wanted to make sure, they were very keen to make sure that the skin graft was getting blood flow. So it had its own special monitors. And then they came to me and said because the margins were so close to the bone, we'd like to take a belt and braces approach and are advising that you follow it up with radiotherapy.

 

Tell us about your surgery

So the radiotherapy, rather than, because I lived midway between the hospital, they decided to send me to a local hospital for radiotherapy, so everything was transferred over.

And the radiotherapy was every weekday for six weeks. I had have one of the masks made that they do for people that are having head and neck radiotherapy. It looks a bit like Tutankhamun, which fastens you down to the table.

And to start off with the radiotherapy seemed fine. I thought “Yeah, this is fine, I can do this”. Once you'd had everything done and everything had been lined up, you were on the table for sort of three minutes.

But then I think it was about two weeks in, things started to get painful. I'd been taking a medication that was supposed to help you not lose your salivary gland feeling, but two weeks in everything started to dry up. Everything started to taste salty, you know like really of salt.

And also I started to get burns inside my mouth and mouth ulcers. After the surgery, I just got back into eating more solid food, and then the radiotherapy kind of wiped that completely.

And so I ended up on Ensure drinks about four weeks in, and I also sort of went to the team. 

I think I was thinking this is going to be painful or this is going to be uncomfortable, and I've just got to put up with it. 

And I went to the team who were always available on the appointments and said “I can’t do this”, and they were like “Fine, we’ll up the medication”. And as soon as they did that, the morphine, things became more bearable.

I mean I think the worst side effect is the amount of saliva, mucus not really saliva, that your mouth produces. You know all through the night, I was coughing, and tissues and tissues, and a spit bucket at the side of the bed.

But I managed to keep eating and drinking the Ensures which kept the nutrition going in, right until the very end. And people were sort of saying to me; “It’ll be afterwards that you’ll feel worse”. 

And I think the last week and following the treatment I went on to steroids to try and get me to sort of keep my appetite up.