Radiotherapy Information

Pre-Treatment Worries

Everyone has worries before they start their radiotherapy treatment, here’s some worries other teenagers have had; The reassurance I was given before and during treatment that it would not hurt or make me go deaf and that I would feel the same afterwards was good. I can’t explain how grateful I am to have had Maureen my play-specialist; I found her a great comfort. I remember feeling very nervous at the beginning. I was fine about radiotherapy after I’d been told that the side effects were not that terrible. Losing my hair was the thing I was most concerned about; that and juggling my A-Level year work and the long journey down to Southampton to be treated. Radiotherapy is like having an operation to remove the growth with out having to be cut open.

Preparing for Treatment

Cold paste is applied to your face, it smells like toothpaste.

Your mask is made in 3 stages but they only need your help for the first stage.

This is what the inside of your mould looks like.

Your face is wrapped in warm bandages.

Here’s what other teenagers have said about mould making and planning.

"Before I started my radiotherapy I had to have a mask made. They made my mask by spreading some cold cream on my face when it dried it was like rubber but it didn’t hurt. Having the mask made was unpleasant and smelt like toothpaste but it didn’t take long. The introduction sessions were quite interesting particularly the mould making {facial}. When my mask had been made however, lying around with people scribbling on my face was boring and I got stiff and sore lying on my back."

Planning and Scanning

A small Tattoo may be made to mark where you will be treated.

The Radiotherapists may make marks on you with pens during planning.

Mould Room, CT, & Planning Questions

What is the mould room?

If you are to receive radiotherapy to your head or neck a plastic mask is made to help you keep perfectly still and for marks needed for treatment to be drawn on, and the masks are made in the mould room.

Why do I need another CT scan; I’ve had loads?

The CT scan is used to plan your treatment and it is important that you are in the same position for the scan and treatment.

What happens in Planning?

Here measurements are made, films taken and marks applied as the treatment is designed for you. All this can take along time so bring music and prepare to be bored.

Why can’t treatment start soon after planning?

After the planning a lot of work is done in Physics and the workshop in preparing everything for your treatment. No two treatments are exactly the same each on is designed individually.

Treatment

The Mask will hold you in place during your treatment.

Lasers are used to line up where you will be treated.

The radiotherapists can see you on a TV screen whilst you have your treatment.

Everyone’s different and so is the treatment. Here are some other teenagers experiences of their treatment:

When I went for the first time to have my radiotherapy I was very nervous and scared. I was allowed to listen to some music but preferred to talk to my mum through the intercom. There were cameras in the room so when everyone went outside they could see me on the camera. After the first time I was all right. When my radiotherapy was completed I was given a present by my play specialist.

Good things about treatment are you don’t have to wait long, cheerful receptionist and the radiographers are nice. Bad things I didn’t like the smell on my mask when the machine was working and my tip is do a count down on the beams whilst the treatment lasts.

When I started my radiotherapy I had to lie under a machine it helped not thinking about the radiotherapy. Your mum and dad can watch you on the camera in the control room.

I would just like to say when I had my treatment all the staff were very kind, helpful and friendly. The music in the treatment room helped me.

Thoughts After Treatment

"I am a seventeen-year-old girl with a tumour under my teeth. I started off with chemotherapy three blocks, then I had radiotherapy. I found radiotherapy stronger than chemotherapy because chemo is going to your whole body but radiotherapy targets your illness. There’s one thing I can say for the staff at radiotherapy, never be afraid to ask them for help on anything or talk to them if you are worried about your treatment they are always happy to help. Well that’s my advice it is not as bad as it sounds and don’t forget if you are worried and unsure just ask."

"My treatment went smoothly and the radiographers were always very good at telling you what they were doing and I’m much better as a result of having the radiotherapy. I still feel tired occasionally but having radiotherapy did not stop me from doing what I wanted. I kept my mask - it’s amazing in its own right and a memory. Four weeks went by quite quickly. Ironically as time went by I think it was my parents who suffered more because they just had to drive me to and from the hospital and sit and wait. At least I had something done for me and I enjoyed all the attention."

Side Effects

Side effects depend on the area being treated, the doctor will explain what you should expect. This is what happens to us and our tips.

I had radiotherapy to my neck so it helped to drink cold water from the fountain after each treatment it soothed my throat. I lost my taste but it came back. My skin got sore during treatment and it was dark at first but it doesn't show now. The radiotherapy made me sleepy but I still played football with my friends.

Everyone said I would be very tired but I didn’t realise how tired I would be. I didn’t like the mouthwash so didn’t use it and my mouth got very sore with the treatment.

I felt a bit sick and drinking ginger beer stopped the sick feeling.

I was very tired and couldn’t always go to school so it was very important for me to make myself do things with my friends to feel normal and keep my social life.

It took ages to get back to eating normally and to regain my weight. My mouth is still dry, I don’t dribble in bed now. My sister hated watching me have treatment.

I remember being very aware of my hair almost expecting it to fall out at the first time. I had a hat that we’d bought and felt comfortable wearing it. The first time I noticed hair loss was about three weeks into my treatment. I woke up one morning and my pillow was covered with little curly hairs. A bit more came out in the shower but I’d been expecting it for so long and it hadn’t come out that it was almost an exciting advancement in my case. It helped that I let my hairdresser know she war very gentle with my hair and when I ordered a wig she kindly styled it for me. I never actually wore the wig. Everyone was impressed with the resilience of my hair. I lost the front left side, which I could disguise by sweeping my fringe across. My skin never suffered either; my head felt sensitive to pressure after a while and a bit sore when I touched it. I never missed school. You just keep on going on a high but I was getting tired. It wasn’t until after the radiotherapy that the tiredness caught up with me, a lethargy. The long car journeys gave me time to dwell and I would feel a bit depressed that surviving one hospital experience {the tumour operation} I still had more hassle to face.

My radiotherapy was on my face and throat, I developed a bad mouth with ulcers and thrush I couldn’t eat because of it. That is why they tell you at the beginning to try and eat as much as possible to keep your health levels up. As well as eating problems I developed sore skin, I found the best soap was simple soap which I started to use the week before treatment began. Now I’m on the road to recovery thanks to all the doctors, nurses and radiographers.

My name is Melissa. This year I found out that I had a brain tumour. I was told that radiotherapy was the best option. Before I started the treatment the Doctors said I would feel tied, they also told me I would loose my hair in the places that were to be treated on my head. At first I was a bit upset, but soon realised that there are plenty of hairstyles to cover my bald patches. Dr Sharpe said my hair may not grow back, this shocked me because I thought my hair would grow back with out any problem. My treatment ended in June and by August my hair hadn’t started to grow. But in the middle of September I noticed some baby blond hair. I was delighted because I hadn’t expected my hair to grow back. It’s now November and my hair has grown about 2cm I hope that anyone in my position will think positive and not worry. It shows the doctor aren’t always right, Dr Sharpe was really pleased and admitted defeat.

Top tips for coping with radiotherapy

• Relax, e.g watch tv, sleep or read.
• Use baby shampoo and simple soap. These are soft on your skin.
• Ask for anti-sickness pills.
• Drink ginger beer if you feel sick.
• Cut your hair short before treatment and then let it grow, this will help hide any hair loss.
• If you can smell something strange during treatment put some 'Vic' menthol on a hanky and put the hanky on your nose and mouth during treatment.
• Get plenty of rest and sleep.
• Talk things over with friends or family.
• Try to carry on as normal.
• Have a drink before treatment and have something available for afterwards.

Thoughts After Treatment

I am a seventeen-year-old girl with a tumour under my teeth. I started off with chemotherapy three blocks, then I had radiotherapy. I found radiotherapy stronger than chemotherapy because chemo is going to your whole body but radiotherapy targets your illness. There’s one thing I can say for the staff at radiotherapy, never be afraid to ask them for help on anything or talk to them if you are worried about your treatment they are always happy to help. Well that’s my advice it is not as bad as it sounds and don’t forget if you are worried and unsure just ask.

My treatment went smoothly and the radiographers were always very good at telling you what they were doing and I’m much better as a result of having the radiotherapy. I still feel tired occasionally but having radiotherapy did not stop me from doing what I wanted. I kept my mask - it’s amazing in its own right and a memory. Four weeks went by quite quickly. Ironically as time went by I think it was my parents who suffered more because they just had to drive me to and from the hospital and sit and wait. At least I had something done for me and I enjoyed all the attention.

The scary bit was in the waiting room for the first time because no matter how much you are told nothing can describe the reality. I found the machines really noisy but the staff were very friendly. The treatment was nothing to worry about you could go to sleep for ten minutes if you want.

Questions

Will it hurt?

No, the Play Specialist is available to tell you about radiotherapy and what happens in the department before you visit. Don’t be put off by the name they can really help.

Will I lose my hair, how much and will it re-grow after radiotherapy?

It all depends on where the radio-therapy is administered, and for how long. For each person the answer is different.

Who do you ask?

Your Consultant Oncologist (Doctor) they are honest about side effects.

What are the side effects?

Each treatment has different effects. The Radiographers who give the treatment advise you on managing any effects and its down to you to comply, we didn’t always follow the advice and suffered afterwards.

When I was told I was going to have radiotherapy I was a bit scared I was told all about what would happen, all the side effects and future side effects. I was given books to read to help me understand what would happen.

If you have any questions about your treatment or you would just like to have a chat with someone about anything you are worried about then just ask your Nurse or play specialist, they are there to help you through your experience. Good luck!