Radiotherapy - worried about side effects, has anyone refused it?

Making decisions about treatments is incredibly hard. I can only add that I had some small blistering from the radiotherapy and a bit of hot boob but otherwise nothing at all and no long term side effects. I had RT in 2013. All the best xx

Yes on the left, i'm having it to the chest wall I also had a mastectomy. No tattoo's as yet!

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Yes ,I also hadc15 sessions last July and  didn't have any problems .After having 5mths chemo,mastectomy and reconstruction I found the radiotherapy the easiest.I drove myself most days and didn't have any particular tiredness .I just used Aveeno cream once or twice a day ,and just wore a crop top so no rubbing from bras . Don't panic about holding your breath .I could sometimes manage 40secs ,but if you have to take a breath the machine stops automatically and restarts when you are ready .

My daughter is also 47 - seem to be lots a similar age on this thread. She wasn't looking forward to the radiotherapy but was absolutely going to take everything offered. She had 15 sessions. The travel and time it took was really the biggest problem. Bit of a hot and sore boob by week 3 and very tired - exhausted - but much improved within a couple of weeks of finishing.  Good luck, whatever you decide.

Similar to you I was 48, self employed and didn’t want to do radiotherapy. I was petrified of long term side effects and predict didn’t seem to up my chances at all other than 15 years was 2% higher. I made the decision to not do the HT as I got myself into a stupor about the effects of that. I’d never advise nor discourage anyone from any treatment as it is purely a personal choice but for me I opted for quality of life over quantity. Apologies if that offends anyone but I didn’t want to be a hot stroppy mess and worried it would affect relationships with my husband and three kids.

I had my lumpectomy and wanted to quit at that. My oncologist advised that radiotherapy would sterilise the breast and I finally caved and had my 15 sessions and 5 boosters as I felt I was meeting them half way accepting partial further treatment. I was thorough in my choice not to do HT. 

Radiotherapy was a breeze, the actual sessions are a walk in the park, you’re in and out in a jiffy and feel nothing. As for fatigue I never got any of that either, I was well rested and drank tonnes of water continually so it didn’t affect me. The process isn’t scary at all. I don’t regret having it but I don’t know that I’d do the same again so I appreciate where you’re at. I don’t have any valid reason for coming to that decision but like you, the what ifs scare me too much. I’ll never know if it benefitted me at all in having them and I may still develop an effect from it even though it was all a year ago. 

Point I’m long winded in trying to make is, you’re valid. Your thoughts and feelings are fully valid and do what feels true to you. Only you have to live with the choices you make. It’s all an ifs buts and maybes anyway, no two people are the same and no outcome is guaranteed. And not being ageist but a 40 something year old has a completely different requirement and outlook than a 70 or 20 odd year old. Please please do what feels right to you and don’t be forced in to making a decision you don’t want to. Every now and then I wonder if I’m doing the right thing, or have I done the right thing so far, and truth is we don’t know, it’s a game of chance by predicting from statistics. 

Regardless or what you decide to do or not to do, I wish you well on your journey and I fully appreciate that sometimes a one size fits all doesn’t suit everyone. Best wishes on your recovery

I am currently in this same position, can I ask if you decided to have the radiotherapy?

Hi Willbe 

I didn’t have it in the end but I did an absolute ton of research before I came to that decision 

i spent a couple of hours with a fabulous macmillan nurse who was also a radiographer who explained everything really clearly and listened to all my concerns and discussed pros and cons with me 

I spoke to a friend who would have actually been the radiographer who would’ve done my treatment - we chatted for 3 hours, she ended up getting my boob out to see where my scar was and see how close to ribs etc (my lump was right at the far side of my boob almost at the point it became chest rather than boob).  One thing she told me is the effectiveness apparently goes down the longer after your operation it is and by this point I was going to be looking at nearly 11 months.  I also found out that apart from in very rare circumstances you only get one lot of RT in your lifetime so mine was just a sterilise the space treatment rather than a reduce a tumour treatment.  And if I then got cancer again I probably couldn’t have RT again.  This was the deal breaker for me 

also the radiation never leaves your body so seeing as though I’m relatively young the chance of the radiation causing me issues later is higher than if I was say 80.

once I’d made my decision I asked to see the consultant again and explained to her my decision - she wasn’t best pleased but said she could see I’d done lots of research and reasoning.

 I also asked her to clarify one point she’d made in our previous appointment.  She said having the RT would reduce the chances of my cancer coming back by 50%.   Now if my chance of it coming back was 90% I’d happily do it as that’s a huge margin.  It’s it’s 5% it won’t make much difference compared to the possible side effects.  so I asked her what my chances are of it coming back with the treatment id had and she said she had absolutely no idea as everyone is different meaning that major statement was completely irrelevant  

when I went back to see my breast surgeon I was expecting a major telling off as apparently they only do lumpectomy alongside RT but he never said a thing to me.

The whole process of deciding was the hardest mental toll of all my treatment and as a result macmillan arranged for me to have counselling for 8 sessions which was really really beneficial and I’d recommend to anyone 

Hi,

You've had loads of replies, so probably nothing new from me, but I just wanted to tell you that I heard the same thing about it being worse than chemo, and it wasn't at all. I expected 20 sessions but they dropped it to 15 after the planning scan - never did quite understand why but apparently it was the most effective/safest way to do it. 

I was freaked out about the ribs/lungs/etc risk, but haven't given it a second thought since. I was a bit tired for a week or so, but still managing sea swims, dog walks, etc - not bed ridden tired like with chemo.

Top tip, if you go for it - moisturise the whole area twice a day in the month leading up to it, and after each treatment. The radiographers said this had really helped my skin. I got some redness but no sores or burning. 

Everyone is different and reacts differently, but honestly compared to the fear of the side effects on the form, the reality was underwhelming - the travel and daily hospital time were the worst bits.

Remember that crying is really healthy and it's completely normal to feel overwhelmed. I'm sure you'll feel better once you decide what to do, as often not knowing makes everything feel worse.

Do be kind to yourself xx

Hi  Michelle_e,

Thankyou for your reply I feel like my head will explode. I am HER2 positive hormone negative and had chemotherapy before surgery which resulted in a complete pathological response. So they are guessing I was a stage 1 grade 3. my lymph nodes were clear.

When I met the consultant he said I should have 5 sessions but no boosts which I would normally have because of my age. He said no boosts because in his words I am cancer free. I am continuing with herceptin.

On predict my outcomes without radiotherapy are 92, 87,84 which I think are good. With radiotherapy it doesn't change at 5 years and decreases by 1 and 2% at 10 and 15 years.

The consultant said that due to having chemotherapy before surgery and it working so well I do not fit any box, and it may be in 12months time I would not be offered radiotherapy due to a current study that is occurring for people in my situation.

I have done so much reading my brain hurts. I still have time to think about it and I have asked my consultant what the rate of reoccurrence is and am awaiting his response, as I feel this may be the deciding factor.

My oncologist is extremely keen for radiotherapy but with no information provided to me to support this view.

Thankyou for your answer it has helped.

Hi, I finished radiotherapy last week ( I refused chemo).

So far no problems, apart from hot boob! No tiredness, no pain, bit swollen but I was still swollen from lumpectomy so haven’t really noticed a difference. 
I had 5 sessions full breast, then 4 sessions targeted on tumour site. Was really easy, worst bit was having to go to hospital everyday, which can in itself be tiring.

I refused chemo based on percentages, I hope I made right decision, but it was my decision and I’m happy with it.