Please share your radiotherapy experiences

Hi

My radiation treatment wasn't exactly the same as you as I had 5 days followed by 5 days boost. I had no side effects except for a slightly itchy rash after about 8 sessions. This soon cleared up with hydrocortisone cream prescribed by the radiotherapy unit.

I felt it was totally worth doing as I'd then done everything I could to treat/prevent the cancer coming back.

I have no after effects and I had it 2 years ago.

One thing to bear in mind if you like holidaying abroad and you decline radiotherapy, is that when I declare my cancer diagnosis I am always asked if I declined any treatment. I don't know what affect it would have to the premium if I had to answer yes.

Hi,

I didn't think about whether to have radiotherapy or not too much at the time tbh - it was offered fairly closely after surgery, and it was just offered as the next step. My chance of recurrence is even lower than yours is.

And the advice from the radiotherapist at the time was they could be overtreating, but because they didn't know whether any cancer cells remained, then it was a useful precaution.

Treatment was very easy, and side effects were few for me. 

I had five sessions, literally 10 minutes at the most in the treatment room. The only reason I knew that I'd had any treatment was a few twinges in my left breast when I was driving home. There was some pinkness, and the hospital had given me a big tub of aquamax cream to rub in to the skin. You need to keep out of the sun as skin remains a bit delicate.

The radiotherapy is supposed to 'fix' the breast, not entirely sure what that means, except it is unlikely to droop at the same rate as the other one.

Hormone treatment is another guessing game if they've offered you that, if this also only has a low impact on recurrence - but I'm glad I've had both. I wouldn't want to be in a position if it did recur, thinking if only I'd had this or that treatment. Hopefully one day, they'll have some clearer options for us all.

Good luck with everything.

I had 5 days , I was node 0 and no boost .  assume it was whole breast as my tumour was at the right sude of my breast but the machine had 2 settings , one above and one at the side . It was my right breast but I had the breath hold radiotherapy. 

I was in for about 10 minutes. I had one day of fatigue about a week later . My skin was fine , I moisturised using neals yard. 

I’m 3 months post radio but I did develop mild edema in the breast ( swollen , warm, heavy ) but it’s a lot better recently and doesn’t bother me unless the weather gets very warm .

Surgeon doesn’t want to refer me yet ( I’m under BUPA), so I moisturise and do self massage .

Are you using Predict new version for stats of % gain of radio ? 

I had Oncotype that showed 5% risk of recurrence and no chemo .

its a personal decision but you should discuss with your radiotherapy oncologist . 

Hi, I had radiotherapy, and drove myself there and back. It took longer to get to the hospital than the whole session did, no longer than 15 minutes. I had no side effects, apart from fatigue, but that could have been because I was going every day for 3 weeks, also driving there and back. I have had no skin issues, but you are told to keep it moisturised, I now have lymphodema, mild in my arm, maybe due to radiotherapy or the fact I have no lymph nodes. A few months afterwards I had a late side effect, where it affected my breathing. I am asthmatic, and now I have had my inhaler increased, but they do say that it can effect your weaker parts, but so did the chemo, my chest and my stomach, as I suffer with IBS. I would definitely have it, it's not painful, and then you know you have given yourself the best possible chance. Good luck. 

Surgeon said very unlikely to develop lymphoedema in arm with SNB, which is what I had but full node clearance is more risky . 

Hi Angel C

I had 5 days about a month ago. Slight pinkness which has now gone and a couple of days feeling tired two weeks later but that quickly passed. For me it was non-negotiable to do radiotherapy (and I feel the same about Tamoxifen), as even though my risk of recurrence is also considered low my personal choice is to follow my treatment plan to the letter. You absolutely should make your own decision, but I would say that the actual treatment was not difficult for me in any way and I believe it was entirely worth it. Good luck with everything. x

Hi Angel C , it’s hard making these decisions. For me, I was clear in my mind that I’d take any treatments offered. So I signed up for 3 weeks radiotherapy (the norm in 2019), and took away my first packet of Anastrozole. I’m still popping the pills, nearly 6 years later. I don’t like the side effects but I feel I’m doing everything I can to keep the beast away! But it’s a personal decision and viewpoint. 
Re the radiotherapy… the treatments themselves didn’t hurt but the skin under my breast got very pink after the first 2 weeks and I did worry that it would break down, but it didn’t. I stopped wearing a bra and just used a soft crop top for the final week and a bit beyond. I did end up with a combination of skin reactions despite moisturising religiously. I got a scattering of sort of scales over the breast and my nipple turned pretty much black. The ‘scales’ gradually fell off as I kept on moisturising, as did a huge scab on the end of my nipple (sorry if tmi, bet you wish you hadn’t asked!). All rather horrible but…. I’d do it again if I was told it was the best course of action for any future cancer. My skin is fine now although I do have mild lympheodema in the breast and at the side, which is apparently a less well known side effect of radiotherapy. And my nipple’s new normal is back to its former pink but a bit inverted. 
That’s my warts and all radiotherapy experience. But I’d add that most people sail through with minimal side effects. I also felt very tired but read that mild exercise was helpful so did daily walks during rads, in the dark if necessary as it was January. Walking has now become my sanity saver!

Hope you can come to a decision that you’re happy with. I’d also add that a lovely member here who used to post frequently documented her story in her profile (click on her username) which in short was that, having had DCIS and offered rads with similar stats to yours I think, she turned it down and then 2 years later had invasive cancer. I’m sure she won’t mind me tagging her so that you can read her story - Leolady56  - she also started the Walking back to happiness thread which is a favourite of mine. Sorry for long ramble! Love and hugs, HFxx

Did you see a lymphoedema nurse?

Hi klf , yes, I asked at my follow up oncology appointment, 10 weeks after rads, why the treated breast was slightly bigger than the other despite having been scooped out and radiated (which can cause shrinkage rather than expansion!). They agreed that it was bigger and also thought it was a bit hot. So they gave me a course of antibiotics in case there was an underlying infection, and referred me to my local lympheodema service. The lympheodema nurse confirmed that it was lympheodema and made recommendations. These included more supportive bras and taking up either Nordic walking or aqua aerobics. I chose  the Nordic walking, signed up for a course and I’m still doing it 5 years later! Apparently the movement helps the lymph get moving. It’s a lifelong condition but in my case it’s manageable. Xx

Mine was picked up by my physio 10 weeks after radio . I thought it was just a reaction to radio . I saw surgeon who said let’s not rush treating it . That was 4 weeks ago .  I’m seeing physio again in 2 weeks and surgeoin 6, so will see what they both say . It’s a lot better , not uncomfy . I wear my sports bra when I can . I will try swimming  x