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. 

  • Macmillan Radiotherapy for Breast Cancer Information page link.

    Most Radiotherapy Units have Free or greatly reduced Parking Fees for Rads Patients - Check with your hospital about this at your pre-rads assessment appointment  :)

    Post breast/lymph node surgery exercises are important regarding radiotherapy to try and get as much shoulder /arm mobility as possible to minimise pain and discomfort (especially after a lymphnode clearance) during your radiotherapy sessions. BCC Post Surgery Exercise Booklet link.

    G n' J

  • FormerMember

    Great idea.i am finished but

    Drink lots

    Get air to your boob

    Don't wear a bra

    Lose fitting tops

    I used r1 and r2 cream which were fantastic,

    I put r1 on straight after rt

    Then r2 4 times a day

    If it felt hot I used 99% aloe Vera gel from holland and Barrett

    I had slightly pink skin but that's all and a brown nipple.

    Hope that helps....good luck 

  • I used R1 &R2 creams and gels with great success.

    Other thing which helped me was the hospital transport to and from the radiotherapy center, in my health authority the service was run by volunteer drivers (they got their petrol and expenses and a little more to make it worthwhile ). Basically they were fab,  picked you up each day and brought you home really friendly and cheery. Many of them were men who had retired early. 

    They were lovely, bought me sweets mildly flirted with me and saved me all the effort and hassle of driving and parking. But mostly they were kind strangers who cheered me up.

  • 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 doom and gloom just good exercise and lots of laughs 

    Hope this helps 

    Hugs and rainbows 

    Debs xxxx 

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

  • Hi I know I didn't have chemo but to be honest I just don't know why people make so much of having rads,  I found it so easy I wore a bra, used deodorant, I could hardly notice any reaction on my skin, and im fair skinned,  I used aloe vera gel organic, the treatments hardly seemed to take any time at all, the staff were all lovely and helpful, sometimes friends took me in evening but during day I caught the bus there and back, ok I do live in a city on a good bus route direct to hospital, and continued sitting my friends dog. I was so relieved I didn't have to have chemo,which Im sure might make it harder, and that my other removed nodes were clear rads was so easy and hardly affected me at all. Possibly I was lucky but im no spring chicken was 67 at time, and I cant honestly say my cataract operation was worse than rads,   June 

    June M

  • Hi June 

    Then I would say just how lucky you were.....I had 19 treatments have had problems with some burning but most of all a weeping nipple which is slowly getting better...I worked throughout and would rush to get to my appointment ....twice on time the rest at least 40 minutes late....some of the staff not helpful or nice....I think you need to be aware that we all have our own journey and some are far longer than others..and more stressed both emotionally and physically 

    I'm pleased things went well for you but we aren't all as lucky and any constructive advice to help others is good....the little things become sooo important

    Rainbow Debs xxxx 

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

  • FormerMember

    Great idea! So here we go.

    I am 8 days post radiotherapy.  I tried to get R1 and R2 but not available from my CCG!  I used pure Aloe Vera (have to keep in the fridge) which was lovely and cooling. Skin is "sunburnt" but not uncomfortable, except for just under my breast, where my bra strap goes.  Here it has gone a dark brown colour and is quite sore, this is just a bit away from my scar so think I will get it checked out.

    Although I had a few sharp pains in my breast at the beginning of rt, I now have pains  on and off all day and night which I am struggling with.  I was told rt carries on working for a couple of weeks after the last treatment but does anyone know if these pains go away after that? I am also quite swollen on that side, around and under my arm.  Not in the armpit. I had a seroma and cording after my op in December 2016 but thought that had got better.

    To the lady who sailed through rt. I am pleased it did not have any adverse effects on you, but we all experience things differently and although the radiotherapy staff, receptionists etc could not have been kinder to me, I found the 45-50 minute trip there, plus the waiting time, broken machines on a couple of occasions, then the 45-50 minutes home again tiring.  I didn't think it would affect me much as I was very positive about it all and grateful I didn't need chemo, but I found by the last few sessions and even now,  I a quite emotional about it.

  • FormerMember
    FormerMember in reply to Rainbow Debs

    Thanks for this post Rainbow Debs. Just excellent. Xxx

  • FormerMember

    No problems at all. Used pure aloe Vera gel. My unit hadn't heard of r1 and 2 but didn't really tell me to use anything. They didn't expect me to have any problems and I didn't. Just went very slightly pink. Worst thing was the waiting half hour to 40 minutes late on a few occasions. Free parking and lovely staff. Used E 45 at night just for a bit of extra moisturising.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi I am due to start radiotherapy next week and appreciate all the helpful advice but I dont know what R1 R2 is. Can you tell me please ?