Radiotherapy club. Post your top tips for dealing with radiotherapy here please

Hi everyone

Following a great suggestion from FormerMember we're going to trial a radiotherapy club, similar to the chemo club, where people undergoing, or about to undergo, radiotherapy treatment can share their experiences. 

To get it going, we thought it would be a good idea to collect your top tips to pass on to those coming after you. 

So if you have any tips for dealing with radiotherapy treatment, please post them here. 

  • Hi FormerMember I hope radio goes well for you. Most of us think it was much easier than chemo!

    R1 and R2 are creams developed especially for radiotherapy. R1 is a cooling gel that you put on straight after treatment (or as soon as you reasonably can) and R2 is a moisturiser that you use 3-4 times a day. I used them for most of my treatment and found them to be excellent. They are available on prescription in the UK. 

    Wishing you all the best.

    Lynn xx 

  • Thank you for setting up - very handy!

    Tzxy xxx

  • FormerMember
    FormerMember in reply to Kacang

    Unfortunately, R1 and R2 cream, although supposedly available on an NHS prescription are not always sanctioned by your CCG! A bit of a post code lotteryagain.  Aloe Vera is very good as well if you can't get R! and R2.

  • You can buy it online without prescription.  It's a false economy not prescribing it though, as I don't know of anyone who had issues having used it for the whole time, whereas the others frequently end up needing other treatments which cost a lot more than the £75 of the R1/R2 treatment.

    Typical of the unjoined up treatment on the NHS, unfortunately.

    Helen

    I am not medically qualified, please consult your doctor or undertake your own research.

  • FormerMember
    FormerMember in reply to mistymoley

    Hi all, I have just finished my chemo yesterday (yay!) and have an appointment for the radio consultation on 27th April. 

    My hospital doesn't do the R1 R2 cream unfortunately. My nurse doesn't seem to think I'll have much luck with the GP either as it the age old postcode thing! Will give them a try but think I will buy it anyway if I can't get it on prescription. 


    I'm fair skinned and have suffered with seroma, heamatoma and cording, really don't want to add burns to the mix! 


    Not sure I'll make the May club as may be a bit soon after planning meeting but fingers crossed I will! Sooner it's done sooner normality can start! 


    Sallyx

  • Hi Sally 

    Congratulations.....all the chemo ladies/ gentlemen on here are soo bloody strong. I'm in total awe of you all.

    Please try and get the R1 and R2....I had no issues at the Gp but then my nurse is 15 years a breast cancer survivor...she just said whatever you need....she's not one you'd argue with lol..

    I was great for three weeks and got some burn and post rt had a few problems with my nipple but now settling ( finished rt 30th March)

    But I like you am fair skinned and had a burst seroma and left with cording  ......if you explain that it's specially developed for rads...its more ignorance than objecting and false economy.....also mepilex pads are bloody brilliant I still use them as just so comfy 

    Hugs and Rainbows 

    Debs xxxx 

    Rainbows make me smile inside and out...think what makes you smile?  Hold onto it xxxx

  • Rainbow Debs said:

    Hi Lynn

    Great idea.....everything everyone has already said....I'd like to add the following 

    At planning appointment if you don't want the tattoos there are alternatives...

    R1 and R2. Fab

    Request your appointments at the same time each day to give 24 hours rest for your skin 

    I worked so had rt at 3pm and long waits so if you can have them as early in the morning as you can no queue!!!! 

    Remember loads of fluid 

    I'm a week and a day post rt and skin has settled down...just a problem with my nipple weeping but doable 

    Take antihistamine  each day get on prescription for higher dosage....I had no itchiness at all ( 180mg fexofenadine hydrochloride by Telfast)

    As I worked and had to wear a bra so if you are in the same position ask for mepilex pads straight away they are softly adhesive and great for protecting underwire against skin especially for those of us with bigger boobs 

    Ask for the wipes to take off the felt tip marks I hated them but that's personal but their wipes are great 

    Air the area as much as you can 

    Deffo get bionsin roll on its actually very good and I'm still going to use it whilst still healing 

    Book onto the move more programme its very good and you meet others...no doom and gloom just good exercise and lots of laughs 

    Hope this helps 

    Hugs and rainbows 

    Debs xxxx 

    Rainbow Debs said:

    Hi Lynn

    Great idea.....everything everyone has already said....I'd like to add the following 

    At planning appointment if you don't want the tattoos there are alternatives...

    R1 and R2. Fab

    Request your appointments at the same time each day to give 24 hours rest for your skin 

    I worked so had rt at 3pm and long waits so if you can have them as early in the morning as you can no queue!!!! 

    Remember loads of fluid 

    I'm a week and a day post rt and skin has settled down...just a problem with my nipple weeping but doable 

    Take antihistamine  each day get on prescription for higher dosage....I had no itchiness at all ( 180mg fexofenadine hydrochloride by Telfast)

    As I worked and had to wear a bra so if you are in the same position ask for mepilex pads straight away they are softly adhesive and great for protecting underwire against skin especially for those of us with bigger boobs 

    Ask for the wipes to take off the felt tip marks I hated them but that's personal but their wipes are great 

    Air the area as much as you can 

    Deffo get bionsin roll on its actually very good and I'm still going to use it whilst still healing 

    Book onto the move more programme its very good and you meet others...no doom and gloom just good exercise and lots of laughs 

    Hope this helps 

    Hugs and rainbows 

    Debs xxxx 

  • I haven't been online for a bit but I just received a mail from admin asking me to share my experience. I see one or two of you are just about to start radiotherapy and have asked for advice. I had 33 sessions of radiotherapy and no problems. I live in France and was given lots of instructions before I started which I followed carefully. It may have been a coincidence but the other ladies I met regularly each day didn't get burnt skin either.

    I was told to shower each morning before I went to the unit and wash thoroughly with a savon surgras. Unfortunately I don't know an English translation for this soap. It is scent free and strong as it has to deal with removing the residue of the moisturizing cream. I was told it is very important your skin is clean.....no cream, no scent, no deodorant. Three French ladies misunderstood the instructions because any slight burning is referred to ' as like sun burn'. They put the cream on to go to the radiotherapy and burnt badly. The cream we were given is 100% hylaronic. If you can't get R1/ R2 I can recommend this as all the ladies I was with were using it too. It's much thicker than creams like E45. It moisterises and cools. I was told to use it as soon as I got home and again in the evening. I am very fair and was blond before chemo and burn easily in the sun but it stopped me getting sore. It was often difficult to remove under the shower. The soap was invaluable here.

    Finally the oncologist recommended a cotton bra particularly a front fastening one. It was extremely comfortable and the cotton absorbed the excess cream stopping clothes getting messy. Going to the unit daily for relatively short sessions can be tiring. If friends offer you a lift, take up the offer! I was lucky as we get transport provided here so I had a taxi every day free of charge.

    During chemo I was very unwell but I had no problems caused by the radiotherapy. I didn't meet anyone following the instructions who did.

    Hope that helps someone. It will be over before you know it. It is nearly a year since I started the radiotherapy. My control mammogram in December was cancer free. Yours will be too!

    Karen

    1. I
  • Hi Karen  Good to hear from you. I hope you're travelling well and are pretty much back to your normal life.

    Wishing you all the best.

    Lynn xx 

  • Hi I am starting radiotherapy in 2 weeks time . I was reading about the r1 and r2 jels do you have to pay for these or can you get them on prescription.  Thanks julie x

    Muzzajulie