Questions to ask re radiotherapy

Am seeing oncologist for first time next week and not sure what I should be asking. have been told it will be 15 days of rads. that I’ll probably feel tired after all sessions are over, skin may be sore, piugment change and skin will flake. Am dreading at as my chaest is still so sore after surgery just 2 weeks ago. They ake it sound simple but sure it can’t be!
Any thoughts or reassurance please anyone? Seagull

I had surgery two weeks ago as well and have had my first oncologist appointment which I admit I found scarey as she told me the negatives s ome ofwhich I did not know about. She gave me a booklet to take away and read which was very helpful and took away some of the fear. They will not start rads until the wounds have healed a bit more at least that is what I was told by others who have been through this. Not really much I can say but listen to all that they tell youtake someone with you as they may pick up something you miss as it is a lot to take in. Ask any question that comes into your head as the only daft question is the one you don’t ask. Hope all goes well for you and it does not turn out to be to harrowing an experience.

Hi Seagull, have you seen the BCC leaflet on radiotherapy? It is very helpful and may answer some of your questions, or help you to formulate others. You can find it here:\_2012\_web.pdf

To reassure you, and Mapie, they won’t start radiotherapy until your wounds have healed and you can get your arms into the right position (what I term the sunbathing position - arms behind your head and elbows out to the side). The wait time is typically around 6 weeks, can be a bit longer (especially where I live, where 8 - 12 weeks is not uncommon) which is to give time for your scars to settle.

Radiotherapy is totally painless - you just lie on a special bed thing with your hands in position and the machine swings round to zap you. There is a buzzing noise a bit like a microwave (without the ping when you’re done) and it takes about a minute at most. Most people find their skin holds up fine, if you do burn they can give your special dressings etc. The most important thing is to keep the skin moisturised with aqueous cream (up to three times a day!). I didn’t get rads fatigue, but lots of people do. I was advised to take gentle exercsie every day as, perversely, keeping active reduces fatigue.

If you are interested, there is a short film of breast radiotherapy here: BBC Two - My New Breast, Radiotherapy It was made at the hospital where I was treated, so may differ in detail from where you are, but it is broadly similar everywhere.

Thanks for the link to the video did not know about them have had a look and found it helpful in making my decision.

As everyone else has said, they won’t start rads until your wounds have healed over, so don’t worry about that.
The impression I get from reading these forums is that those who have had chemo first find the rads easy to get through by comparison with the chemo, but experience a lot more tiredess, presumably because they’ve already had the stuffing knocked out of them.
For those, like me, who didn’t have chemo and just had rads, I found it a doddle apart from the sheer tedium of slogging to the hospital every day, delays taking longer than the treatment itself, etc. I followed the advice I had seen on here to get some exercise every day because it would help with energy levels, so after I had had my treatment in the morning, I made myself go for a good walk every afternoon. For me it worked very well and I felt fine all the way through and afterwards. My skin went a bit pink and didn’t peel, even though I’m very fair skinned.
One thing I would ask your oncologist is which type of radiotherapy you will be getting. In this country we are way behind many other countries and most people are still treated with “conventional” rads which causes overlapping fields on the lower part of your breast. This is why so many end up very sore and peeling in that area. There are various more modern methods of doing a 3-D modelled version of rads so that you only get the highest dose where it’s needed at the site of the tumour, and a lesser dose elsewhere to mop up any stray cancer cells. Unfortunately the NHS does not widely advertise the fact, probably for fear that more people would ask for the more precise treatment. Many hospitals have the machines that can do it, but they’re short of physicists to plan the treatment.
Try asking - if you don’t ask you don’t get!

And on further thought, the other thing I found very useful was (again) the advice I found on here, and from the Christie Hospital where I had my radiotherapy, which was to do arm and shoulder exercises before, during and particularly after the rads, to make sure I kept maximum mobility of that joint.

Apart from any after effects, it can be quite uncomfortable having to keep your arm above your head whilst they get you into position for treatment, so if you can improve the flexibility of that joint you will find it so much easier.

I might sound like a total exercise nut, but believe me I’m not, and if you could see the shape of me you’d believe me!

It’s so important to keep that arm/shoulder moving. The rads damages the blood supply and that together with one’s natural tendency to hunch around a part that hurts, means it loses movement if you’re not careful. There’s a really good leaflet on the BCC website that shows you recommended exercises (and a free DVD that you can get sent to you) but I can’t remember where to find it [BCC help please!]

I’d seen my Mum lose so much shoulder mobility after she had BC that I didn’t want to go the same way, and that gave me the motivation I needed to exercise. She ended up having to have a replacement shoulder joint and I don’t want that!

CC x

Hi Mapie,

Here’s the link to BCC’s exercise leaflet and DVD that CheshireCheese talks about. Hope you find it helpful.

Jo, Facilitator

Thanks again - good advice - nice to hear about the exercise, but like you Cheshire Cheese, I am the least sporty type in the whole world! Will do my best now you have said it helped.
I was given the BBC booklet with DVD on exercise before my first op and have tried to do them when I can. I felt really let down that I have been offered no physio especially since my mx. I have had loads of other ops in my life and always had physio afterwards.
Generally I feel very much’on my own’ now, The consultant doesn’t want to see me for 6 months, the oncologist for a year. My husband thinks that’s great but I feel abandonded. When I said to the oncologist that I thought I’d go and see my GP she said, in a very blunt way ‘WHY?’ For support you idot of course! I know she will be lovely. A friend had BC 10 yrs ago and her GP insisted on seeing her every week after her mx for 3 months. May be a bit much but anything is better than nothing!
Still a bit anxious about it all and will be glad when it is all over, but don’t expoect it will ever ‘all be over’ even though my results were very good! My husband is a half-full type - I struggle with that myself sometimes as I don’t trust life any more - that little devil is waiting around every corner to leap out on me!!

Hi Seagull
I hate to say this, with your love of exercise, but I was doing the excercises about 5 times per day at first, during rads and in the months immediately afterwards, gradually tailing off so that now, two years after finishing radiotherapy, I’m “only” doing them once per day!

Hi Seagull, I think you can self refer for Physio these days - I live in Gloucestershire, and we can do that here. If you telephone your GP practice, they will tell you. For us, you ring the Physio department and they do an initial assessment over the phone, then make an appointment for you. I am sure the would be glad to help you, and let you know if you are doing the exercises right. Sometimes a bit of encouragement goes a long way! I too am waiting for rads and not quite sure what to expect - will be thinking of you,

Hi Seagull. I finished 15 sessions of rads nearly 3 weeks ago. I did feel a bit tired towards the last week so took a weeks holiday from work to recharge my batteries and am feeling much less tired now. I think the tiredness was a combination of poor sleep due to hot flushes from Letrozole and daily treatment - I also decided to continue to work through the rads. My advice would be to apply a soothing non fragranced,hypoallergenic cream up to 3 times daily starting once your wound is fuly healed to make sure your skin is in the best condition before your rads start. I did have some soreness and peeling of the skin under the breast sfter my rads finished and found that Bepanthen nappy rash ointment was brilliant at soothing any irritation and moisturising the peeling areas. It is gentle enough to use on prem babies and is non medicated. Also let the air get to your skin as much as possible. It’s best to check with your radiotherapy department first - mine were quite easy going on what I used as long as it didn’t cause any reactions.
It all sounds really daunting at first but you soon get used to the routine and my radiographers were lovely and very caring. Don’t worry about your scar - treatment won’t start until it is fully healed and you can put your hand up above your head. You will be asked about any skin problems and followed up closely throughout your treatment. Good luck with your rads - they will be over sooner than you think - you too Liz x

Hi Ibe got 2 more out of 15 to go with my rads. So far my skin just looks like I’ve been sunbathing, nothing awful. No flaking and only mild tiredness. My skin did get a little itchy, but they advised 1 percent hydrocortisone cream. Also I showered using aqueous cream, then applied it once an hour before treatment and once again in the evening. My onc didn’t recommend anything other than aqueous cream. Make sure if you do suffer with any side effects tell them and they will sort you out. It really hasn’t been as scary as I thought it would be, far easier than the chemo.
good luck x

Thanks everyone - liked the suggestions re creams to use. Can you use those whilst having the rads? I thought not. But will try using some simple cream before I srat on Dec 18th. Hope it doesn’t affect Xmas!!

Hi everyone. A friend of mine suggested i use the serum from an aloe vera plant on my skin during rads. She said u split 1 of the leaves in half then rub the juice bit thats inside on your skin. It prevented her from having any soreness and even the hospital were impressed at how her skin had healed. I wont be starting rads untill the end of January so havent tried it myself but its definatly something i’m looking into.
Sian x

radiothearapy sounds a lot more scary then it is. the process involves getting changed into a gown, laying on a couch, getting into position, getting zapped, and then changing back into your clothes. the machine moves across you - you do not go into a machine. I found the whole process fairly easy and carried on with work as normal ( apart from lifting). the main problems were skin reaction, and tiredness at night, although that coincided With clocks changing).

Hi I used 100% aloe Vera gel during and leading up to and after rads and didn’t get burned or sore. I was told categorically not to use aquascream as it would offer no protection. Aloevera is used for sunburn is very natural and the closest thing to peeling a leaf from the bush that you would find in the Caribbean. Lovely cool gel.

Hi Sian, I also used aloe gel - but from a bottle rather than directly from the plant - and my skin went pink - but never blistered or anything bad. Some chemo units advise against aloe vera though! It’s difficult when we get different advice…!

My radiotharapy experience is detailed in my blog here: Z is for… Zapping those Cancer Cells with Radiotherapy | Chemo For Beginners - an A to Z of all things "C".

Hope it goes well for you.


Hi All

I was advised my my BCN to get Xclair cream - she gave me a leaflet about it and there is a website, She said it is the best cream for rads but expensive but you can get it on prescription. I am due to start rads in Feb so haven’t tried it yet.

Has anyone come across it?

Jayne x

Not hear of your cream Jayne, you were lucky to get advice. I pressed the rad staff and they said they were not allowed to give advice at all about any cream. I guess I case of suing in the event of complaint!

Hi, I finished 5 weeks of radiotherapy in December. I was advised to use xclair and got it on prescription. I used the xclair cream twice a day and I had some discolouration of skin but hardly any soreness.