M. B's Story - Recovery from the Effects of Radiotherapy following Treatment for Throat Cancer
I am writing this to assist those who have received radiotherapy for throat cancer. It describes my experience of receiving this treatment and issues that arose for me during the recovery process.
Everyone's experience will be different as no two cancers will be identical and the area of the throat and the subsequent treatment will affect symptoms experienced. However, I hope that many of my experiences will be similar to others and that by detailing them, others in recovery can draw some reassurance that their experience is within expectations.
The main caveat to what follows is that I did not receive surgery to remove the cancer, which was on the back of my tongue, but only chemo and radiotherapy. Those who have undergone surgery may have some additional issues that I did not experience but I would think that much of what I experienced will be common to us all.
This documents the symptoms and issues that I experienced during and after my six-week course of radiotherapy finished and I hope some of my experiences may be helpful to others who have to go through a similar treatment regime.
The most important thing that I learned is that full recovery from the effects of radiotherapy to the mouth and throat takes years not months. For me, symptoms continued to improve for three or more years after treatment had finished although the pace of recovery is obviously faster in the early months. It is easy to get down by the slow pace of recovery but remember that things continue to get better for a very long time.
I am dividing my experiences into the following areas:
• Direct Radiation Effects and Consequences
• Energy Levels
1) Radiation Effects
The mouth, throat and neck are a complex area and it is not surprising that radiotherapy to this area produces many side-effects. I am going to address each of the following areas:
• Food reflux
• Dental care
• Mouth opening
• Skin breakdown
• Candida (Thrush)
Radiotherapy causes damage to the tongue resulting in changes to taste. Immediately after treatment, some foods taste relatively normal whereas others are plain and bland. The important thing is that as your tongue and mouth start the recovery from the radiotherapy, your taste will improve and vary. During my recovery, I often decided that I didn't like a food and avoided it for ages. However, when I eventually tried it again I found that my taste had changed and the food was much more satisfying. What I am really saying is that this is a changing situation and it is easy to develop rigid ideas of which foods work and which don't work for you. Keep trying new foods and going back to old ones – you will be surprised how things change over time.
The only food that has continued to be difficult is spicy foods. Initially, it was all spicy foods but I can now tolerate a mild to moderate levels of spice (eg a korma curry). The exception is chilli! Anything with even the smallest amount of chilli in it still makes my mouth burn.
I don't have to tell you how dry your mouth gets following the radiotherapy, especially noticeable at nights and when trying to eat anything dry. This will improve and I was still noticing changes more than two years later. Initially, I used to carry around a saliva replacement spray which I found helpful as well as the obligatory bottle of water. At night, I would also use the saliva replacement spray. In the early days, I also found Biotene Mouth Gel very helpful at night. Sips of water also make your mouth feel moister but as my recovery progressed, I found that the water seemed to wash away any small amounts of saliva that were being produced. I still have sips of water at night to keep my mouth from getting too dry.
Even when your saliva has recovered significantly, the quality of it may have changed. I find that although I do not notice my mouth being dry during the day (I still often find dryness a problem at night), the saliva does not have the lubrication properties that it had prior to treatment. This results in food sticking to your teeth much more when eating and the tendency to bite one's cheek or lips whilst eating. This can be avoided to an extent by eating your food more slowly and focusing on eating more carefully.
I found that the radiotherapy affected the muscles of my throat and made swallowing difficult. Swallowing was OK for very moist foods, soups and fluids. However, with foods that required some chewing, I would find that my swallowing muscles became tired quite quickly. In the early days, it takes quite a while to eat anyway. I found that after a few mouthfuls of food, I would be chewing a mouthful for ages and I realised that I was reluctant to swallow the bolus of food. I got round this by sticking to more liquid foods and eating small amounts of food more often. This will get better over time but can take many months. This contributes to the difficulties of maintaining your weight as it tends to restrict the amount of calories that you can consume. I found the use of nutritional supplements essential to maintain my weight. (more under “Diet”).
Because of the effects of the radiation on the soft palate (the soft part of the roof of your mouth at the back), I found that when eating or drinking there was a tendency for the food to reflux up into my nose. Normally, the soft palate seals off the nasal cavity when you swallow to stop this happening. This reflux just contributes to the difficulties around eating. It feels unpleasant but is not harmful. It will improve over time and the speech therapists may be able to give you exercises to help strengthen the soft palate and speed recovery.
Swelling of cheeks and neck
The radiotherapy causes considerable swelling of the cheeks as well as the tongue and other tissues around the mouth. The swelling of the cheeks in association with the lack of saliva (which normally has a lubrication function) leads to a tendency to bite the cheeks when eating. The only way of coping with this is to eat slowly and carefully. I had a lot of mouth ulcers during the radiotherapy and these took some time to heal. I found that I continued to get mouth ulcers, often associated with biting my cheeks when eating. These ulcers were very painful and made eating (already a difficult process), even more difficult. As the swelling resolves over time (many months I am afraid), I found that things returned to a more normal situation. I found that, when I had mouth ulcers, the use of anaesthetic gels before eating and at night made a big difference and improved the eating experience enormously.
I had surgery to my neck to remove an enlarged lymph node and other nodes in the neck. This resulted in disruption of the lymphatic system which drains fluid away from tissues. This in combination with the radiotherapy, resulted in painless swelling around and below my jaw (worse on the side of the surgery). This is known as Lymphoedema. You can get some stroking exercises to help with this but it will settle down over time as the healing process slowly takes effect.
I have already mentioned the effects of radiation on the tongue in relation to taste. Another effect is the restriction of tongue movement that will occur for a number of months following treatment. This restriction of movement makes it difficult to clean food from your teeth and around your mouth after eating. This effect is enhanced by the decreased lubrication provided by the saliva. The easiest way of countering this is to carry a small toothbrush around with you so that you can clean your teeth and mouth after eating.
I am sure that you will have been told of the importance of good dental hygiene. This is doubly important following radiation treatment due to the effects of the radiation on the jaw. It is worth ensuring that you visit the dentist regularly to identify any problems early. I was never very good at looking after my teeth but I have now got into the habit of brushing my teeth twice a day and using inter-dental brushes and dental floss daily. I also use a fluoride mouth wash twice daily. I use a non-alcohol formulation as alcohol ones can sting the mouth a bit particularly in the early days of recovery.
Following treatment, I found that I was unable to open my mouth as fully as I used to be able to prior to treatment. The tissues at the angle of the jaw inside my mouth became very tight and prevented me fully opening my mouth. I also noticed the tightness when yawning. This tightness will ease over time but may take a number of years in my experience.
It is very common to get a Candida infection in the mouth (also known as oral thrush) during or after treatment when the mouth may be ulcerated. This is easily treated with anti-fungal drugs but is quite likely to return from time-to-time, particularly if you get run down or over-stressed. Try to see your doctor early and get treatment as it can be very painful and make eating difficult. Again, local anaesthetic gels (such as those used for mouth ulcers) can be very useful and help if used before mealtimes.
Some people get a breakdown of the skin of the neck during treatment. This can be quite painful and the area needs to be kept moist and covered. Although it looks dreadful at the time, it heals rapidly once the radiation treatment has finished and does not leave any scarring or other skin signs.
I would be surprised if anyone's diet is unaffected by radiation therapy. Apart from the damage inflicted on your mouth, throat and salivary glands, the effect on your tongue and how you perceive taste is dramatic. Many of us will have had to be fed by a tube for part of the treatment period and I could only manage liquid foods and supplements for many weeks either side of this. However, once the radiation treatment has ceased, recovery can begin. As mentioned previously, the lack of saliva initially means that only liquids (eg soups) or very moist foods are acceptable. As time progresses I found that I could manage a greater variety of foods but many of them did not taste as I remembered them tasting. I still find dry food difficult to eat a number of years after treatment. It is a matter of experimenting to find those foods that work for you but just because a food doesn't work at one point in your recovery doesn't mean that it will always be that way. Keep experimenting.
Lack of appetite
I certainly found that I lost my appetite during and after treatment. I lost over a stone in weight during treatment and found it quite difficult to put the weight back on once treatment had finished. I have never counted calories before but I found that I had to try to maintain an intake of a few hundred calories over my normal intake. Eating becomes a chore for a while but it is just something that has to be done to ensure that you don't waste away.
Difficulty maintaining weight/Supplements
Once I had started to take food again by mouth, I found it difficult to maintain my weight, let alone put it back on, by sticking to a normal diet. Due to the effects mentioned already relating to difficulty swallowing, lack of saliva and lack of taste I found it impossible to physically eat enough calories each day. I overcame this problem by using high calorie, nutritional supplements which either came as a liquid drink or as a powder to be mixed with milk. There are many different flavours so try to find the one that is most palatable. And be creative! My partner achieved this by adding a chocolate mousse to a banana milk shake making it much more palatable but also adding 200 calories to the mix. I probably continued to have supplements as part of my diet for six months following treatment.
Travelling and food choices abroad
Inevitably, as you begin to feel better, you may be tempted to travel somewhere nice and sunny to recuperate. Lovely though this is, it can bring its own problems. The local food may be very different from that at home either being spicier or drier. I used to carry my supplements on holiday so that I knew I could top up my calorie intake every day and not feel pressured to try to eat something that didn't work for me. It may be useful to have a doctor's letter saying that you have to have supplements as sometimes the security staff find it strange that you are taking a lot of liquid on the plane.
I found that because of the trauma of the treatment and problems with eating I developed a very negative attitude to food and eating. I didn't see it as a pleasurable experience but a bit of a trial that had to be gone through. I accept that this is probably a personal experience but you may find that the whole process of treatment leaves you with some changes in the way that you view things. I found it quite difficult to accept that many things were just not going to be the same as they had been before my illness. Over time, some of those things have improved but you also begin to get used to the fact that life has just changed in some respects.
Inevitably, you will find that your energy levels are pretty low once treatment has finished. I was advised not to go back to work for six months and I have to say that that was pretty good advice. To start with I used to spend a lot of time in bed only getting up for a few hours a day. I did try to get some fresh air and go for short walks and I found this very helpful. I am lucky in that there are some very lovely gardens nearby which I am sure helped my recovery. I continued to have an afternoon sleep for a few months and found this very helpful. Everyone is different but you need to be kind to yourself and allow the body time to heal.
It is a great shock to be told that you have cancer. On top of that, the treatment for this particular cancer is especially traumatic and it takes a long time to recover from the effects of the treatment. However, you will recover, the memory of the bad times will fade and life will return to normal. Enjoy life and be positive.