The Next Challenge
By Andy Burrows, 29 August 2024
Getting ready for Battle #5
“Were you expecting this?”
That’s what the Ear, Nose and Throat surgeon asked as I showed very little reaction to being told they had found cancer in the lump he’d removed from my neck in June.
I gave him a wry smile and said, “I suspected something was wrong when you brought our appointment forward by three weeks.” Also, having had cancer four times already, I know that when the doctor is joined by a nurse specialist, it’s normally bad news.
So, yes, I have another cancer to deal with – mucoepidermoid carcinoma. Don’t worry, they had to say it to me several times and write it down before I could pronounce it properly!
It was, if I’m honest, a surprise, and a disappointment. But, given my experience of these things, by that stage it wasn’t a shock.
It was a surprise because during my lengthy experience of that lump I haven’t felt any pain from it, and until recently no doctor has really showed any interest in it.
This is really a lesson in the importance of always taking lumps seriously. So, I’ll try to tell this story as briefly as I can.
Lesson: Treat lumps seriously
The story begins sometime during 2021. I started to notice a little lump just behind the corner of my jaw under my left ear. I mentioned it to a haematology consultant in one of my stem cell transplant follow-up appointments. He examined it, and to my surprise he assured me that it didn’t feel like anything to worry about. He said sometimes those little lumps pop up, but they’re quite benign.
So, I went with what he said and tried not to worry about it, even though I didn’t really like having a lump on my neck. I then mentioned it to other doctors another couple of times over the next couple of years, but only really in passing, as something that was “probably nothing”.
In October 2023, however, I brought it up again at a transplant follow-up clinic in Southampton, because I felt it had got a little bigger and harder. This time the doctor seemed slightly concerned, and said that ideally I should have an ultrasound scan.
One of the complications is that since May 2023 I’ve been plagued with a horrible chronic cough, which is still unresolved to this day. I also mentioned that to the doctor in Southampton, just in case he needed to know about it or might have any ideas. He examined my face and suggested that my sinuses might be an issue.
So, rather than requesting two scans, he asked my haematology consultant in Salisbury Hospital to request a CT scan of my head and neck. One scan to look at the two issues.
That CT scan was done in December, and the haematology consultant in Salisbury got a message to me just before Christmas to say that there was “nothing of concern” in the radiology report.
My immediate comment was that they might not be concerned, but I still was.
I happened to then have one of my checkup clinic appointments with the Salisbury haematology consultant on the phone in January. We talked about it again, and again she said they were not concerned with either the neck or sinus results, although there was evidence of inflammation in my sinuses. I acknowledged that they may not be concerned from a lymphoma point of view, but I asked who the right people would be to follow up with about my cough. She advised that it would be the ENT team.
As it happened, I’d also just been referred by my GP to ENT at Salisbury Hospital. So, the haematology consultant said she’d also prompt them to respond.
These things evidently take time, because my ENT appointment was in April. And I have to emphasise that at this stage my priority was my cough. The lump was a painless inconvenience. The cough impacts my life in all sorts of ways.
At that appointment, the doctor discussed my cough and my sinuses and even stuck a camera up my nose. But she noticed the lump on my neck, and from that moment she was more concerned about that. “Who’s looking into that,” she asked. I explained that I didn’t really know who should be looking into it, and that I’d had a CT scan but didn’t know who to follow up with. She said, “that’ll be us – well, Face and Neck, but it’s still part of ENT.”
She explained that it may be a benign lump called a pleomorphic adenoma, but since 20% of those turn cancerous, they always like to remove them. So, she immediately sent me for a pre-op assessment and requested an ultrasound and a needle biopsy.
Three weeks later, I was told that the biopsy had been reported as benign, but because of some inconsistencies between the tests and scans, they’d like me to have an MRI scan.
I assume that between the CT scan, the ultrasound, the needle biopsy and the MRI scan, something must have remained unclear, because I was then told that I should have surgery to remove the lump. They said they’d like to remove it anyway, even if it was benign, but they’d also send the tissue for a full biopsy.
That surgery was done on 12th June. It was, in their words, major surgery, because of the risks involved. It was under general anaesthetic, and I stayed in hospital overnight. And it took a good couple of months for the post-op swelling, scarring and numbness to reduce.
Even then I didn’t expect bad news from the biopsy.
My follow-up appointment was booked for 31st July, but got moved to Friday, 5th July, with only a couple of days notice. That’s when I knew.
And that’s why I wasn’t surprised at that appointment when I walked in the room and saw the surgeon flanked by a junior doctor and a clinical nurse specialist, and then heard the words, “the biopsy has been reported, and unfortunately it is cancer.”
A new diagnosis
Mucoepidermoid carcinoma (“MEC”). Low/intermediate grade. It’s not related to the lymphoma I’ve had or any of the treatments I’ve had over the last 15 years.
All I was told was that I would almost certainly need more surgery, but they would decide that at a multi-disciplinary team (MDT) meeting. Before that, I was to have further CT scans – of my neck and chest (because MEC can metastasise into the lungs as well as local lymph nodes and bones) – as well an ultrasound scan and another needle biopsy.
My main feeling, going out of that meeting, was “another cancer?! Wasn’t four rounds of lymphoma bad enough?” But that’s where the thought fizzled out. Because it’s not going to achieve anything. It is what it is. Another thing for me to respond to, to trust God for.
The question is, how?