radio starting in 4 weeks, any advice please

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Hi everyone
Im having radio in 4 weeks. Had surgery just over 2 weeks ago, WLE and axillary clearance and before that 7 chemos. Any advice please for radiotherapy, what to expect etc? We are hoping to go on holiday 3 weeks after I have finished, is this too early? I have read that aloe vera gel is good so have bought some. Thanks . Ness xxx

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hi ness from my experience your holiday would be fine but you do have to cover up for first 12 months and sun block after that,i was very tired 7 days after first session and that was a shock but everyone is different i used aqueous crean and it was great for me good luck x

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Hi Ness
I’ve just finished 19 sessions of Rt and have minimal reaction, a bit pink but otherwise side effect free. I didn’t have chemo and I believe that having chemo first may make the process a bit more stressful. but anyone I met who’d had chemo felt that RT was a ‘walk in the park’ compared to chemo.
Re holidays - I had booked cheap flights to Italy some time ago, but waited until last week to book accommodation as I didn’t feel we could afford to lose the price. Have to say I feel absolutely fine and have no hesitation going ahead with holiday. I do realise I will have to cover up but that’s no big deal for me. I’m happy in the shade.
Good luck with your decisions.
S

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Hi

I dont know where to post this, but how do the oncologists work out the length of the radiotherapy for each individual person? i.e. 3 weeks, 6 weeks??

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Nessp , don’t use the aloevera gel at the start, treat your skin pre rads as if you are going on hols and exposing your skin to strong sun , so moisturise, moisturise , moisturise use something simple like E45 , you shoud be given cream to use during rads by your rads team ASK them, it will be an aqueous cream keep using it, wehn your skin start to get a bit sore ( like the sun burn) use the Aloe vera to cool and sooth ( cabbage leaves chilled in the fridge are good too) The gel can be a little drying so still use the Aqueous cream, the only time you shouldn’t use that is if your skin breaks, best not use it then as it can encourage infection, but of course keep talking and asking your rads team. xx

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Hi Chrissy16

I believe that NICE guidelines recommend a standard course of treatment of 15 sessions over 3 weeks (week days only). Your onc may decide to add a few booster sessions to specific areas in addition to that.

Sarah x

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Hi Nessp

Side effects from the rads will peak about 3 weeks after you finish the treatment, so your hols will coincide with that. But don’t panic, it hopefully won’t be much more than being rather pink and feeling a bit tender. As others have said, just be careful to keep that side protected from the sun. After having coped with chemo you should find rads very boring, and I mean that in the best way! Just keep doing the exercises to stop the area stiffening up.
Sarah x

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hi chrissie16,

interesting question about the calculations, am I being cynical in wondering if the calculation has changed since the recent cuts??

I do wonder if my op being so far away has more to do with the theatre that has been closed at my hospital than the fact its not an agressive tumor. when they find out whats what with my various bits I will certainly be asking them the basis of any treatment dicisions they make.

you never know they might have got the maths wrong, I was once nearly quite ill because a midwife got a decimal point in the wrong place.

mm that has gone away from the original post–hope you dont mind

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I am sure i read on an old post that if you excercise each day the effects of radiotherapy are reduced–is that right?

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I am almost halfway through rads ( 7 down, 8 to go) following 2 WLEs.The stiffness and pinking is just happening. I was sure when I started that I would be able to exercise on my Wii fit and walk to the hospital which is only 1 mile from where I work. How wrong was I! Managed it twice. Having rads in the afternoon mean I am wiped out for the rest of the day but ok the following morning to work. I find this pattern is working for me. I have been asked by my employer when I will be able to be fit to return to full time work( what he said was if you are having your last treatment on the 15th June will you be coming back full time on the 16th?!). Have given him the BCC leaflets to read! No response yet!
Everyone I know who has been through this (and there are more than I ever thought possible) warned me about tiredness and they were right. You must rest when you body is telling you to. I know the guidance says that rads affect people differently but tiredness does seem to be to most common side effect. Also use the aqueous cream regularly. It does help. Best wishes

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Re: aqueous, I used this throughout and before my rads, had minimal reaction, but when I discussed this with the lymphoedema nurse, she said aqueous isn’t a moisturiser, it doesn’t penetrate the skin, just sits on top - its used as a cleanser- but is cheap (probably why they recommend it) I have been prescribed a double base cream, which is much nicer comes in a lovely pump dispenser - still no perfume and such, just thought I would share this info with anyone who’s interested, get it on prescription from gp.

Also be careful with E45 as it contains lanolin, which should be avoided if you’ve had any node removal.

Simple soap, also good to use for washing (or aqueous!)

Take care x

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Hi oldandlumpy
I also read that suggestion about exercise each day to help with the radiotherapy and followed the advice, walking 2 or 3 miles each day after treatment. I don’t know if it was that that made a difference but I found the rads a breeze (apart from the irritations of actually attending the hospital and being kept waiting, etc) and didn’t suffer from excessive tiredness. Some days I had to make myself go for a walk but I always felt better for it. I believe it’s the increased circulation due to exercise that helps your body cope with the rads.
The other exercise that is useful to do throughout and after rads is the exercises recommended in the BCC leaflet. I’m now 9 months post-rads and still doing them to relieve stiffness.
Sarah x

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Hi Crazycatlady,

Could you tell me why lanolin should be avoided by those who’ve had lymph node removal?

Thanks,
K x

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I dont know but i’ve replied so it gets bumped up and someone who does know might answer

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Hi hope, I went to a group physio just after my op, they told us about lots of things we should now avoid, due to the risk if lymphoedema, the use of creams with lanolin in is discouraged as lanolin forms a barrier on the skin - blocking pores and not allowing the skin to breathe, therefore increasing the risk of lymphoedema - I do now have lymphoedema in my breast, again the nurse told me not to use any creams with lanolin in when massaging .

Hope this helps x

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hey
im 4 weeks after 20 rads, 15 normal then 5 booster.

this is what i did

i used aqueous cream in the shower and on my skin 3 days before and during. in the day i would use some aloe vera gel. the soreness was worse with the booster.

i didnt wear a bra at all, i stuck to loose clothes and a vest top. .

kaz xxxx good luk

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I went to Majorca three weeks after finishing rads - I did have some blisters and was on antibiotics before I went but still managed to get there. I used aqueous cream to wash and aloe vera for cooling. I also got some sterile dressings from my district nurse to take with me to cover the blisters so my bra didn’t irritate them. You do have to keep covered up though an use high factor. Oh and I was told not to go in the pool or sea but hey, at least you’re away - Enjoy!

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Thanks for your advice crazycatlady! I have just started rads (8/25) and have lymphodema in my arm and on my chest. I had a reaction to the e45 cream the hospital told me to use and then they said to use aqueous, but my skin is still drying as it is not soaking in very well. I will try the double base cream, I have some at home already and see how I get on. Many thanks. Lone xxxx

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Glad I read through here as I will be starting Rads soon … have I read that right … you wash with the aqueous cream ?

Thanks
Mekala X

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hi
thanks everyone for your advice, have appt friday for rads planning. do I get aqueous cream from my gp or from the hosp when i go friday? i have some aloe vera gel too and have been putting that on every day. Ness x