Cancer?
On the 7th December 2010 I arrived for a hospital appointment with my ENT surgeon. The appointment had originally been the day before, but having arrived at the hospital the previous day, I had been informed that the doctor had been called away on family business. The apologetic receptionist asked if I could come back the following day. I was reluctant as I had already missed time off work but she added, 'The doctor was very insistent that you come back tomorrow. You'll be the first appointment so you won't have to wait.' I agreed and walked away with those words 'very insistent' going round in my mind. The words were still going round my head as I tried to sleep that night.
This was just a follow up after my really minor surgery removing a painful pimple in my ear canal. It was so minor that I'd be dropped off the operating list on my first surgery date after waiting in the ward for five hours. That was it, the doctor realising that he had to cancel my surgery the first time was now proritising me after cancelling me this second time. I went to sleep.
I arrived early, the usually busy waiting room was deserted and the receptionist was just setting up for day. 'The doctor will be with you soon.' she said before I had even introduced myself. I sat for a couple of minutes before the surgeon arrived and called me through to his office. 'Take a seat', he offered as he began removing his coat having clearly just arrived. "Now look here, Mr Norwood." he suddenly burst as he fumbled with his coat buttons. 'This thing we took out.' he paused, 'Well, it's nasty, really nasty. In fact it is malignant.' 'You'll have to go off to St George's, they usually see you quite quickly - probably two weeks.' I just sat there not sure what I was hearing. Did he just say malignant? Wasn't that something to do with cancer? Why do I need to go to St George's? I sat in silence as he continued. 'I suppose I better take a look at your ear.' He shone his torch in my ear and announced 'Yes, that is healing very nicely. Well, as I said about two weeks at St Georges.' I can't remember whether I said thanks, goodbye or anything. All I could think of was that I needed to get out of that room immediately. I needed to escape.
I was back in the car. I had to see my wife, Catherine. I drove to her school. I parked. I went to the office. I was taken through to the deputy head's room. 'I need to speak to Catherine.' I stated. I don't whether it was my tone, my facial expression or just the out of the ordianaryness of my visit but he said 'Of course.' and was immediately gone to get my wife out of class. Catherine arrived clearly surprised to see me. 'I'm sorry,' I mumbled, 'but I think I've got cancer.' and then I burst into tears.
'Just like you, to get a rare one.' a friend had remarked at the time. It was a few weeks later. Catherine had been busy, ringing hospital departments and trying to get my appointments and scans and follow ups before Christmas. On the first visit we had arrived still not knowing anything and still not quite believing. Had I made a mistake, misheard or misunderstood? Worried people over nothing? Unfortunately not. 'Adenoid Cystic Carcinoma' we had been told. I had asked them to write it down. That was then but now I knew everything I could about ACC. The scans had been done and we were back being introduced to a surgeon. He told me that it was a simple operation to cut a small 2mm margin around the original excision site. There was nothing on the scan that indicated anything further. That should of been reassuring news. A simple operation and forget about this. However, it wasn't.
Since learning of my cancer I had read every scientific paper I could access. I now knew that ACC was very rare and that it also didn't behave like most cancers. It was very slow growing but tended to spread out much further than 2mm margins. It also could invade tissues such as nerves and bone. There was one thing that research agreed on and that was doctors needed to take a very aggressive approach. 'How many patients with ACC have you treated?' I asked. 'I am a very experienced surgeon. I've done this operation hundreds of times.' the surgeon replied, clearly uncomfortable at having his professional status questioned. 'How many patients with ACC have you treated?' I repeated. 'None.' he eventually conceded. Catherine then entered the conversation, 'We'd like to get a second opinion from someone with experience with ACC.' Catherine had been doing her research as well and knew there was a doctor at the Royal Marsden who had experience of ACC.
Second Opinion
It was the beginning of January, Catherine had expedited the referral letter to the Marsden and we were now at our third hospital waiting to see the consultant. It was quite surreal to be in the waiting room at a cancer hospital. Most of the patients, like myself, looked well, were chatting with partners and friends, smiling and having cups of tea. Though there were some anxious faces and some who had clearly had some treatment, generally, we could of all been waiting for a train!
After a short while we were called through to a small consultation room with a few chairs, a trolley with some electrical equipment on it and a two or three anatomy posters. Then the consultant arrived and introduced himself. He listened while we explained why we were there, how I had pain in my ear for about seven or eight years. How I had been seen about five years before and they had ruled out any cancer at the time and sent me instead to pain management. Finally, how Catherine had persuaded me to go back and ask them to remove a particularly painful pimple in my ear canal that would never heal. The discovery of the cancer after surgery and how I thought the pimple was just the top of a volcano and that there was a magma chamber underneath which was the cause of my pain. The consultant continued to listen whilst Catherine explained our journey since being informed of the cancer and why we were searching for someone who knew about ACC. Somebody who could give us advice on what needed to be done.
After listening to us patiently the consultant finally spoke. He told us that he thought it likely that the cancer in my ear canal was from the parotid gland, a big salivary gland in the cheek. In his opinion an aggressive approach to treatment was required. He proposed to remove the ear canal, part of the outer ear, the parotid gland and some of the bone around the ear. This would be followed by radiotherapy. From my own reading into ACC I knew this was what the research suggested. I had found a doctor who understood the condition, a doctor who I could have faith in and someone who I could trust with my life. I didn't want to keep reading medical papers and be the 'expert', I wanted to be the patient and be in the hands of an 'expert'. When the consultant then offered to take me into the care of his team there was no hesitation in happily agreeing.
A Slight Rethink
Two weeks later we were back at the Marsden to see the consultant again, but now as his patient. He had now received the scans from the previous hospital and my case had been discussed at the clinical team meeting. The scan had showed no sign of a tumour. He explained that as the scan was clear the operation I would have would be slightly scaled back. A partial paridectomy rather than the complete removal that he had first suggested. Though I was happy to be having less surgery I challenged the assumption that there was no tumour. I knew somehow that something was lurking near my ear, my 'magma chamber'. I also remembered reading that ACC was particularly difficult to image and I said so. The consultant reassured me that "Only one in twenty tumours do not show up." I wasn't particularly reassured by that statistic but I was glad that the proposed operation meant leaving my facial nerve intact and reduced the risk of facial palsy. So the new operation was agreed and I was put on the surgery list.
