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

Hi pleased to find this I start rads on the 24th so liking all the tips.I had my tattoos last week and I can't find them I do have freckles and blemishes on my chest anyway.I'm just worried they have to be done again.(Hospital is 100 miles away I stay in Monday to Friday for three weeks)has anybody had this problem?

Don't worry  they'll find your tatts - I guess they know what they're looking for and as your details will be programmed in, they'll know where they should be.

As for staying over  did the same. She lives in Wales and had to travel quite a distance to the hospital that had the machines. I've tagged her so hopefully she'll be able to offer some suggestions for making it bearable. 

Good luck. 

Rainbow Debs said:

Hi Sally 

This is really making me cross...these so called professionals aren't going through it. The. Evidence is on here for a start...perhaps you could show your GP all the messages on here....I have said Already my GP is great but also the practice nurse is a breast cancer survivor of 15 years ...she googled it whilst we chatted and then said ordered...give it two.days...it took three but I'd ordered.In plenty of time....even the pharmacist was interested as he'd not seen them before

You can insist....they need to be educated that these gels/creams are specially developed to help with the side effects...perhaps if you ask if it was someone in their family would they be so dismissive...

When I speak to the pals team and trainee radiologists I'm going to bring this up....we spend enough going each day 

Sorry rant over its just so unfair....mind you if you met my nurse you wouldn't argue with her...ive just got loads of mepilex pads and polymem roll...you cut this and wet one side It's so cooling its bloody marvellous lol ...I'm in West Lancs 

Hugs and Rainbows 

Debs xxxx 

Hi Debs, 

Yes it's all so inconsistent isn't it?! To be honest the doctor just wasn't interested! Mind you haven't really got a relationship as such with GP as pre BC or post in all honesty I haven't had to go to see them! 

Oh well luckily I'm ok to buy them, but appreciate that not everyone will be able to afford it though, so yes very unfair! 

Sally x

Kacang said:

Don't worry Geordiegirl47 they'll find your tatts - I guess they know what they're looking for and as your details will be programmed in, they'll know where they should be.

As for staying over KiwiCardi did the same. She lives in Wales and had to travel quite a distance to the hospital that had the machines. I've tagged her so hopefully she'll be able to offer some suggestions for making it bearable. 

Actually, one of my tatts disappeared. They said sometimes the body just absorbs the ink. It just took a lot longer to have my first session as they had to send me to a different place to have the tatt redone. They lined up on the two that they could still see and did the third one again, then I went back to Radiotherapy for my zapping.

I really enjoyed staying at the hostel, . It meant I could just walk to the Radiotherapy Unit without having to worry about traffic or parking, have my session, then go back to my room and have a rest. I was using the R1/R2 for moisturising, so I would sit for 20 minutes in my room with a bare front letting the R1 gel sink in, then smooth a layer of R2 cream on before getting dressed.

After that the day was mine. Sometimes I went for a walk, sometimes I read, sometimes I would get together with the others staying at the hostel and we would go and see a film. I quite enjoyed it and saw it as 3 weeks just for me - no one else to worry about, no other responsibilities, just time for me to have my treatments and focus on getting better.

Hi Sally,

I didn't use the R1/2 Creams. Can't remember why as it was only Dec when I had my 15 sessions of RT. 

I used a combination of E45 lotion & àloe vera gel (from health food shop). I mixed the two together & applied after every session. I applied liberally all across my chest and sides three times a day. Some recommended keeping in fridge for extra coolness, but I didn't. 

I'm very fair, and can burn in the shade. I had no problems with my skin whatsoever. 

My Radiotherapists hadn't heard of R1/R2. (I went to a private facility in Portsmouth as I needed the machine for the left breast cancer.)

Please don't worry if you're unable to source these Creams.  There are lots of stories from others who've had excellent results without them too. I'm just telling you so that you don't panic.

Wishing you the very best xx

Unknown said:

Hi Sally,

I didn't use the R1/2 Creams. Can't remember why as it was only Dec when I had my 15 sessions of RT. 

I used a combination of E45 lotion & àloe vera gel (from health food shop). I mixed the two together & applied after every session. I applied liberally all across my chest and sides three times a day. Some recommended keeping in fridge for extra coolness, but I didn't. 

I'm very fair, and can burn in the shade. I had no problems with my skin whatsoever. 

My Radiotherapists hadn't heard of R1/R2. (I went to a private facility in Portsmouth as I needed the machine for the left breast cancer.)

Please don't worry if you're unable to source these Creams.  There are lots of stories from others who've had excellent results without them too. I'm just telling you so that you don't panic.

Wishing you the very best xx

Thanks Moonstar

I have sent for them now directly from the company. Just hope they do the job for £72! 

I'm sure other creams do work just as well but I think I've just got it into my head now that I wanted them! 

Next part of the journey I suppose.

Sally x

Hi Sally,

I'm glad you've managed to get them. You'll sail through RT. Take care,  xx

Remember to include your nipple 

I didn't hence the problems x

Hi all, I'm almost two years post RT. In was told under NO CIRCUMSTANCES to use E45 or any other creams/lotions that we eco ill based.

I suffered minor problems with my skin and the cream, gel and dressing the specialist nurse gave my just made matters much worse so I used aloa Vera gel from Holland and Barrett and kept it in the fridge. Used a couple of times a day it worked wonders.

Good luck to those of you having treatment tge is light atere end of the tunnel 

I had a phone call from my Oncologist before my radiotherapy set up appointment. She said she wanted to include the skin of my right breast area because the tumour removed during the mastectomy was rather close to the skin. To achieve this, they place a gel 'bolus' across the skin during radiotherapy, which somehow enables the skin surface to be irradiated as well as the chest wall. 

So I was expecting my skin to be fried, and surprised at the lack of engagement about these worries. The reason for the wooliness is outlined in the following 2015 Society of Radiographers' paper (link to PDF below). In summary, there is little clinical evidence internationally for any product limiting skin damage significantly. I think that's why they go light on the doom and gloom! 

www.sor.org/.../12832 

The paper has links to some very good appendices which are a bit more plain English. 

They gave me a patient information leaflet that was clearly based on one of the appendices in the paper above. So I was bemused to be given a tube of aqueous cream (not much use, apparently).

Reading the Mac community info, I tried to get hold of R1R2 via the pharmacist and PIP numbers -no luck. So I bought it online and it arrived very quickly a few days into treatment. It definitely helped, but the weekly quantities are inadequate for a large area of irradiated skin, so I should have gone for it and ordered more. 

By the way, the Radiographers said that skin colour is not particularly relevant in radiotherapy and dark skins can suffer badly (X-rays, not UV radiation). 

Skin must be clean though (see French practice above). I have a button under my arm for the expandable implant. I  thought I was being clever to use a bunion plaster to cushion it (removed before I started radiotherapy). The residual glue I couldn't wash off was visible in bunion plaster-shaped burn that emerged a few days in. 

Radiotherapy itself was ok. Skin did get 'sunburnt' as it progressed, but then I was having the skin 'done' too. 

Peak soreness was about 10 days post radiotherapy when it was peeling and weeping in the underarm area where the skin is thinnest. Even mepilex took the surface off. Local practice nurse very helpful and we agreed on Medihoney wound gel smeared on the mepilex before application. Used medihoney skin wash in the shower too. Took 2-3 days to heal. Currently using aloe vera cream and bio oil to moisturise/help mastectomy scarring. 

By the way, I found a large fine Indian silk scarf most comforting against the skin when it was feeling burnt but not weeping (try the charity shops and wash carefully).