Tonsil cancer? Didn’t even know that that was a “thing”, sounds a bit too much like toenail cancer. However, on New Year’s Eve 2018, I was diagnosed with cancer of the tonsil (just the one, on the left). A bit about myself – I am male, last time I looked, six feet tall and 19 stone in December 2018. I’m a big bloke, broad-shouldered and big-boned. I have been disgustingly healthy for most of my life (62 years) and I visit a doctor about once every three years if they’re lucky.
My story started a bit earlier, back in September 2018 or thereabouts. I had noticed a lump in my neck on the left side, typical of a swollen lymph node, totally painless. I have been prone to lumps in my neck most of my adult life but something about this one rang an alarm bell, perhaps because it had been hanging around a bit. I have to say I procrastinated for a couple of weeks, mainly because I had a new job to deal with, but eventually I made an appointment with my doctor. He deigned to see me after four weeks. I am grumpy about that! This will be the subject of an official nastygram shortly. Anyway, doc expressed dislike of said lump and referred me to ENT department of local hospital.
I got to hospital ENT medics fairly quickly, nine days if memory serves. The main man took me very seriously and had me sent off for ultrasound and fine needle aspiration biopsy the same day. This was fairly uneventful and not at all painful. I was then scheduled for CT scans and MRI scans, both of which were completed within a week. By then the biopsy result was back – inconclusive. I was sent for another ultrasound and biopsy – also inconclusive but a bit more painful. The main man told me he wasn’t at all happy with my tonsils, specifically the left one, and proposed to remove them forthwith, along with the neck lump. He said he thought that the tonsil inflammation was masking something. I asked him “What?” and he replied “Cancer.”
I had surgery late in December 2018 and had both tonsils and three lymph nodes in my left neck removed. Let me tell you that tonsillectomy for the over-60’s is not a walk in the park. The main problem for me was trying to sleep without choking on my own throat for the first two days. I was summoned for a consultation with my surgeon on December 31 2018. I was told I had cancer, squamous cell carcinoma, of the left tonsil. One of the three lymph nodes removed was also cancerous. The good news was that there were clear tissue margins around the excised left tonsil and that the cancerous lymph node was contained within its capsule. The remaining two lymph nodes were clear, as was the right tonsil. The official diagnosis was “pT1N1”, p meaning confirmed by pathology, T1 meaning one primary tumour and N1 meaning one local structure (the lymph node) also affected. There was also an implicit “M0” to tack on to the end of the diagnosis, meaning no metastases (spread of cancer to other organs), although that couldn’t be confirmed via pathology in my case. I learnt later from my oncologist that my particular cancer was HPV-16 positive. This is apparently a good thing as long-term survival rates are considerably better for HPV-related cancer.
I was told that I needed to have chemo- and radiotherapy to make sure I was “cured”. The chemotherapy was to be administered once a week for six weeks and the radiotherapy five times a week for six weeks. I needed to have three teeth removed from the left side of my jaw, to prevent osteoradionecrosis – apparently there’s a risk of the jawbone itself being killed by the radiation and this risk is greatly accentuated if you have any kind of issue with your teeth. I was very grumpy indeed about that as I had spent years at Birmingham Dental Hospital having these teeth saved and all their hard work and mine was now down the pan! I was also told that I needed to be fitted with a PEG tube – Percutaneous (through the skin) Endoscopic (down the throat) Gastrostomy (hole in the stomach). Deep joyload. The PEG procedure wasn’t half as bad as I imagined, mainly because I was administered major sedation prior to the event. Duly fitted with my PEG, in case my throat refused to let me swallow food or meds in the weeks to come, I started my radio- and chemotherapy course a couple of weeks later, Monday 19 February 2019 to be exact.
In order to make sure that the radiation hits the same parts every time, you have to wear a shell that covers your head, neck and shoulders. It’s made from a sheet of plastic that has hundreds of diamond-shaped perforations in it, much like a sheet of expanded metal. When you get fitted for your shell, this sheet is heated up in a water bath, then moulded to your head, neck and shoulders and allowed to cool. When cooled, it has set hard and fits you like a second skin. You cannot move more than a millimetre or so inside it. It has fasteners around the edge that clip into holes in the treatment couch so you end up being “bolted down”. It’s not unlike a fencing mask but with bigger holes and a much tighter fit. I thought it made me look like something from Dr Who.
The actual radiotherapy is quite quick and straightforward. I had my shell lowered onto me and fastened down, then the radiographers spent some time checking that I was in the correct position and took X-ray images to act as a reference for the treatment beam positioning. This took perhaps ten minutes the first time. The treatment beam is then turned on, loud clunks from electrical contactors and a rather unpleasant whining alarm being the only give-away. The head of the linear accelerator orbits around the area to be treated, the tonsil bed in my case, once in each direction for about 180 degrees. This makes sure that your external tissues are receiving as low a dose as possible whilst delivering a therapeutic dose to the treatment site. This part of the process takes about two minutes. After a few more clunks, the radiographers troop back in and unbolt you from the couch. That’s it until tomorrow!
I wondered if I could feel a bit of “sunburn” after my first treatment but dismissed it as psychosomatic when I didn’t feel it again. I did develop a really dark suntan around my throat and jaw on the left towards the end of the treatment and in the last week, my skin start to break down, “desquamation” they call it. A strange (to me) side-effect was that my beard stopped growing in the area where the treatment beam had been and even now, nine weeks on, my face is like a baby’s bottom in that area.
I was monitored throughout by a dietician and a speech therapist, who usually came to see me on Tuesdays while I was getting my chemo and couldn’t escape. It is imperative that you don’t lose weight during your treatment, otherwise you will start to rattle around inside your shell and everything will have to stop while you get a new shell made and get “recalibrated” for the treatment. I actually lost a stone and a half from end of December until end of March, but as a diet I can’t recommend it! I avoided needing a new shell, but probably only just.
The speech therapist is there to help you keep control over your swallowing and jaw movement and will prescribe you exercises to keep your jaw and tongue mobile and to strengthen your swallowing ability. In my case, I didn’t ever have too much trouble with swallowing and jaw movement, perhaps because I was only getting the left side of my neck irradiated. The dietician is there to bully you into eating so that you don’t rattle around in your shell. To be fair, the dietician wants you to eat a balanced calorific diet and to keep healthy. I was actually eating for Britain but still slowly losing weight. I managed to continue at work for most of my treatment, only taking a week off after the first four weeks of therapy when I was tired out. A week’s rest got me back to work for week six of treatment and I have continued to work since.
One of the side effects of treatment is that your sense of taste changes dramatically. This is more likely to be due to the chemotherapy than the radiation but I don’t suppose that helps either. I found that meat ceased to have any taste at all and the only things I liked and could still taste were sweet stuff like sweets, milk shakes, ice cream and sticky buns. Luckily, I work next door to a McDonalds and could indulge in milk shakes on a regular basis. After the treatment was finished, it took a few weeks for my sense of taste to return to something approaching normal and I still can’t cope with a curry any hotter than a korma. Some people describe having a “metallic” taste in the mouth and I certainly had a taste in my mouth a lot of the time, although for me it was more like toothpaste than metal.
Another side effect of the chemo is (or was for me) constipation. My bowels would just shut up shop on chemo day and the following day. If I had to name one thing I disliked most about my treatment, constipation would be it. I lived on a diet of senna for six weeks, adding Movicol on chemo days. I also got galloping heartburn after chemo and the following day and was prescribed an Antacid and Oxetacaine suspension to take as required. This helped a lot.
Chemo days were quite fun in some ways. The Chemotherapy Day Centre at Royal Shrewsbury Hospital is a big airy open-plan room with a central atrium and dividing wall that comes to shoulder height. There are ten treatment bays arranged around the walls each side of the dividing wall, for a total of 20 bays (or is it 24?) There are curtains around the bays for privacy if desired but most of the time they remain unused. You get to see and talk to your fellow patients to some extent and you can get up from your comfy chair and go for a stroll if you want, pushing your drip stand ahead of you. The CDC staff were marvellous, as were all the medics I came into contact with during my treatment. My day used to start with a bag of saline, to which would be added a steroid, Dexomethasone, and an anti-emetic, Ondansetron. This last made me think of a sixties record player. Who thinks up these names? The idea of both of these drugs is to stop you feeling nauseous. I never felt nauseous so I guess they work. The Dex gave me “steroid euphoria” however and the first week I had it, I could have run to work, only fifteen miles after all! I always said you get the best drugs in hospital…
After the saline and anti-emetics came the chemo proper, a drug called Cisplatin which actually has platinum in it. The purpose of this is to stop fast-growing cells from reproducing and as cancer cells are typically fast-growing, Cisplatin is effective against them. Unfortunately, other cells can be fast-growing too, such as the lining of your gut and your hair follicles. Perhaps this is why I didn’t visit a barber for two months and had constipation? To finish the chemo, another bag of saline and magnesium electrolytes was dripped into me. I’d usually go for a blast of radiotherapy between the Cisplatin and the final drip. At the end of the day, I calculated that I’d had 2.25 litres or half a gallon of fluids dripped into me. I know I was peeing for Britain for the next 24 hours. The whole procedure used to take about five hours.
I won’t pretend that everything was sweetness and light during my treatment. I was quite down after my initial diagnosis and it took a couple of weeks at least for me to come to terms with the fact I had cancer. I didn’t like the PEG for the first couple of weeks, it was painful until it settled in. I was very cross about having to have three teeth out. Constipation is just horrible. However, considering all the things that might have happened but didn’t, I feel I came out of it very well. I am convinced that being a big strong healthy git helped. I’m not sure I’d have had such an easy ride if I’d been an 11-stone beanpole. I’m not sure how well I’d have done if I’d needed both sides of my neck zapping.
It’s been nine weeks since my treatment finished and every day tends to be an improvement. I had a busy week at work this week, 57 hours, and I was glad of the Bank Holiday long weekend, to be honest! Usually, however, I feel pretty “normal”, but then, I always did. As an aside, I haven’t needed my PEG for food or meds at all and can’t wait for it to come out, probably in a couple of weeks.
Please feel free to ask me anything you want about my experience. Part of the reason I wrote this was because of all the depressing doom and gloom-filled horror stories I read prior to starting my treatment. I wanted to put my view of things out there. For me, it wasn’t too bad at all.
Hi reteps and a very warm welcome to the online community
Thank you very much for sharing your 'story' with us. It sounds like you had to go through a lot of treatment but I'm glad you've come out the other side so very positive.
I wondered if you'd consider joining the head and neck cancer group and posting your story there as well. I'm sure others who have been diagnosed with tonsil cancer would find it very helpful.
To join the group just click on the link I've created and then copy and paste your post from here to save you typing it out again.
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