Our new blog mini-series is based on a question ‘what you wish you had known’. We’re bringing the Community together to share hints and tips around different cancer treatments or situations you might be facing.
Today we’re encouraging the sharing of your experiences of radiotherapy. We know how helpful it can be to hear from someone who has been through it themselves.
Whether you are starting radiotherapy treatment yourself, or supporting someone having radiotherapy, we hope this blog will help you find the suggestions you need.
In the Radiotherapy forum, we asked the Community for their guidance in a recent thread 'What you wish you had known before starting radiotherapy?' Some of the advice provided could be relevant to anyone facing any type of radiotherapy.
“One thing to be aware of. In my experience, treatments are rarely on time so give yourself plenty of time. There are usually delays for various reasons. If your particular treatment allows it, take snacks and drinks and something to keep you occupied.”
“Talk to the professionals even if you think it’s trivial.”
“Having a daily treat after each treatment gives you something nice to look forward to. Doesn't matter what it is as long as you enjoy it.”
“All the staff from receptionist to radiographers are brilliant / friendly. They have seen it all before & will help every step of the way.”
"If you feel tired rest, as it’s hard to shift if you don’t listen to your body."
"Plan your journey allowing for traffic / roadworks & most importantly to allow time to find a car parking slot (the most stressful part of treatment in my opinion)"
-Community members, Radiotherapy forum
Other radiotherapy experiences might differ to yours. How you have radiotherapy will depend on where the cancer is in the body and the type of cancer. As Jane points out,
“Radiotherapy to different areas of the body may lead to different side effects”
Jane had 25 sessions of external beam radiotherapy to the pelvic area in 2022 and says
“Being told you need radiotherapy can be daunting and I know I had lots of worries about it.”
“When you have your consents appointment they do tell you the possible side effects but I didn't realise they would come on so quickly. The treatment itself is painless but I had side effects almost straight away.”
"They did mention that people tend to feel tired but I did not realise quite how tired I would feel. Although the treatment itself took less than 5 minutes I was normally at the hospital an hour before the appointment for the preparation and then there was often a bit of waiting around. I was away from home for around 4 hours a day and had 25 sessions. I also continued to have fatigue that lingered after treatment ended. The travelling tired me out more than I had anticipated."
"One thing that worried me was the thought of the tattoo dots. Before I had mine I was imagining all sorts. They were actually a drop of ink on my skin and then it was pricked with a tiny needle.”
Jane has shared more in the thread for shared experiences of radiotherapy in the womb cancer forum. Please do have a read through, ask questions or add your own experiences.
You're also welcome to start your own discussion if you have questions or need support. There's always someone here who understands how you feel and wants to help.
"My CNS did warn me that some people do experience a serious kind of tiredness from the radiotherapy from about two weeks onwards, but that didn’t happen to me and I drove myself to and from each appointment. Advice was to have a snack immediately after treatment, so I did that before driving home, and also kept up my calories in the evening, with ice cream or chocolate as a treat, and I think that helped."
Lots of people come to the Breast cancer forum feeling anxious about starting radiotherapy. Some people had practical questions about what to wear, others just wanted to talk through how they were feeling. You're not alone and there are members available to provide reassurance and support.
" I found the staff very professional and will do their very best to make you feel at ease, cover you with a paper cloth and chat to you or not as you will."
"Do you know yet how many sessions you’ll have? I ticked each one off on my calendar, and noted each day what proportion I’d done. Half way through felt like a real achievement! And really it flew by."
"I was so scared yesterday for 1st session but I came out wondering why I had been so worried. It was fine and radiographers were lovely and friendly. Same again today, everyone was friendly and professional."
Members of the head and neck cancer forum have been supporting each other through difficult radiotherapy decisions and treatment. Radiotherapy for head and neck cancers can cause different kind of side effects to those experienced by others. There's lots of advice available from forum members who have been through it themselves.
"Does anyone on here have any advice? Do the radiographers listen and can they make adjustments to make the mask more comfortable?"
"...the effects of radiotherapy can ramp up for a while after treatment is finished."
"Everyone on here is helpful, supportive and caring and a lot of us have charted our journeys that you might find helpful"
Members of the Prostate cancer forum have also shared some great advice. Brian says
"So here's a very practical hint for anyone about to undertake Radiotherapy to the Prostate. Plan your return journey home to ensure you know where public toilets are located because as your radiotherapy progresses so does your need for the toilet!! (trust me I know!). Whatever your cancer - I wish you well on your personal Radiotherapy journey."
Prostate cancer forum members offered lots of tips around radiotherapy for prostate cancer, which we have combined into the following list:
- Thanks to David2017 and Agent99, Prostate cancer forum members
Looking for more general tips or have your own advice to share? Go to What you wish you had known before starting radiotherapy?'
We have featured only a few of the forums where members are talking about radiotherapy, but you can ask questions in your own forum or in the general Radiotherapy forum. Perhaps you could start a new thread sharing radiotherapy tips in your own forums?
Looking for expert information and support? Find Macmillan pages on Radiotherapy here.
