Radiotherapy Treatment Doubts / Questions

Going through breast cancer treatment Radiotherapy
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Hi everyone, hope you are all having a good day today.

I’m currently weighing up the pros and cons of Radiotherapy treatment for my Breast Cancer, to see what the benefit is, before I decide if I want to go ahead and have it or not - as I’m currently struggling to see how the percentage benefit can outweigh the long-term serious potential side-effects.

My Breast Cancer was in my left breast, so radiation damage to my heart is a possibility (along with all the other side-effect risks to:  lung,  bones/ribs,  breast skin damage/tissue hardening/shrinkage,  lymphoedema,  secondary cancer recurrence,  fatigue etc).

I’ve had a Mastectomy with immediate DIEP Flap Reconstruction, I’m currently half-way through my Chemotherapy and I’ve been told I’ll be on Hormone Tablets for 10yrs but I’m struggling with whether or not to go ahead with Radiotherapy treatment (which I’m due to have in late January 2023, after my chemo is finished).

(I also have a Brain AVM and I declined Stereotactic Radiosurgery back in 2019 because I felt the negatives of the radiation side-effects outweighed the benefits for my type of AVM, as it wasn’t guaranteed to eradicate my AVM but I could be left with long-term, permanent, life-altering side-effects from the radiation.)

I would be very grateful to hear about peoples’ experiences with having Radiotherapy treatment for their Breast Cancer.

  • What immediate side-effects did you have?

  • What late, long-term, permanent side-effects due to Radiotherapy treatment are you living with?

  • What other cancer treatments did you have (surgery, chemotherapy, hormone medications)?

  • Has anyone had a local cancer recurrence, even after having Radiotherapy treatment?

  • Was anyone told what their percentage benefit of having Radiotherapy treatment was?

  • Does anyone regret having had Radiotherapy treatment and what is the reason you regret having had it?

  • Has anyone else decline Radiotherapy treatment and how did your Medical Team react to you doing that?

Your help in giving me some perspective on this would be much appreciated, to help me make a more informed choice.

Thanking you in advance ??xx

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Hi MT

I can understand your reservations, given that you’re in the middle of a gruelling chemo regimen. I’ll just give you my perspective. My oncologist told me that radiotherapy is the most effective of all the treatments for cancers. Just based on that, I would go ahead with the treatment.

I was wiped out by chemo and only given 3 weeks before starting radiotherapy. The hardest part was having to attend daily. I really thought it was a doddle. The only side effect I had was a mild itch in my shoulder blade towards the end of the 15 treatments. Millions of women have breast cancer in the left breast and then have radiotherapy. If there were a real risk to the heart, this simply wouldn’t happen. I asked about this and they explained that they are able to use a shield to protect the heart but there was always the possibility of some scar tissue at the top. That’s all.

The fact is, they are obliged to warn us of potential side effects but nobody gets them all, some get none at all, some get some with different degrees of severity. I know of someone who felt she was being burnt to a cinder. I didn’t even get redness. It’s chance and you don’t know till you try it (you can always stop but you’ll have your 3 tats forever). As for percentages, as they stand, I believe they are meaningless. They are a statistical average and we are not statistics. We are individuals. So, if you’re told it will make a 3% difference to full recovery, that looks to be negligible - but for you, as the individual, it could make a 100% difference. Is it worth risking recurrence?

Although I didn’t experience anything during the 3-week period of treatment, I did experience longer term side effects, including fatigue and neuropathic pain in the radiotherapy site which I still have 4 years on. My ribs are tender and I need to carry out those bloody breast muscle exercises daily! I am now being treated for Stage 4 Triple Negative bc, my tumour being behind the bridge of my nose (of course, where else would you expect breast cancer!) with subcutaneous skin mets. The prognosis is/was poor but again, it’s just statistics. I’m still on my first line treatment 20 months on, defying the odds. I repeat, we are individuals, not statistics. And I have no regrets that I gave my primary treatment every chance, including radiotherapy. It’s just bad luck that some TN cells escaped the net (as they tend to).

I can see from your post that you are approaching this decision in a very considered way. However, you have to factor in the fact that you are still having chemo and must feel the emotional and physical toll - you’ve been through the mill. In fact, you’re still going through it. I would ask yourself if, having decided not to have radiotherapy, will you be able to move on or will there always be this nagging thought that maybe you should have had the treatment after all. You really don’t want to be caught in that trap of endless worry about recurrence which I know some women experience, regardless of whether they had the full works or not. The fact is, metastasis is not down to inadequate treatment, it’s basic physiology and good or bad luck. Radiotherapy will not be a guarantee but it will improve your chances of full recovery.

I think you’ll have worked out what my advice would be lol. I wish you all the best for the rest of your chemotherapy and whatever you choose to do after that,

Jan x

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Hi,

 I haven’t had radiotherapy yet but will be beginning 15 sessions with boost on 19th December. I had a WLE with therapeutic mammoplastu and sentinel lymph node biopsy on 19th September. 

I questioned the need for radiotherapy and was told that although in some cases it may not be necessary for me it definitely was. The majority of my cancer was high and intermediate grade necrotising DCIS but there had been 2mm of grade 3 IDC which was all removed in the diagnosing vacuum assisted biopsy, none remained in the tissue removed in surgery. However because it had been present and the DCIS was necrotising, which basically means it was breaking down probably to become invasive, and it was triple negative radiotherapy was necessary. I was told that without radiotherapy the chance of recurrence could be as high as 40%, with it that chance reduces to 7%. So for me there was really no decision to make, I have to have it. I consider myself fortunate that my cancer was detected early and removed just as it was on the verge of becoming more aggressive which means I have avoided chemo but if told it was necessary I would have accepted that I had to have it.

My oncologist said that he has to tell me about all the potential side effects and some of them are quite scary but most are very rare. He said that radiotherapy has been much improved and is better planned and targeted than it used to be.

Only you can make the decision on whether to have radiotherapy, your health care team can only advise but not force you to have any treatment. It is likely that the percentages will be much lower in your case but as Jan said they are only general averages and each individual is different and may just be one of the 3%, or whatever number is quoted, no one knows for sure. 

I was diagnosed after being recalled following a routine mammogram but wasn’t too worried because the recall letter said that only four out of one hundred women are recalled and of those four only one will have cancer. I remember sitting in the breast care centre on 22nd July, my recall appointment, and slowly realising as nearly all the other women there came and left smiling with relief and I was still there facing more test that I was the one in four. The point I am trying to make is that statistics are just numbers and not much comfort when you realise you are one of the unlucky minority.

Good luck with the rest of your treatment and with making the decision about radiotherapy. I hope someone else who has had radiotherapy comes along to answer some of your questions.

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Hello MajesticTiger

i thought I would just add to the helpful replies you’ve already had. 
I had 5 sessions of RT which finished 2 weeks ago. 
I was lucky in that my journey to the hospital was only half an hour each way so it wasn’t too tiring, nor did it give me much time to fret on the journey. 

My tumour was on the left and so I had to hold my breath a few times during each session. I have to admit I was really nervous I wasn’t doing it right but I think the staff monitor you very closely. 

Apart from that and feeling fatigue twice, yes only twice, I have had absolutely no side effects. I’m really hoping none emerge but I think I would be really unlucky if so. 

I did look after myself during the week of RT and built in plenty of rest and early nights just in case. 
I drank plenty of water and ate healthily (I think I do that anyway). 

Good luck in making your decision-for me the decision was never in doubt. 
My oncologist told me after lumpectomy and RT my risk would be reduced to 3%

Im now grappling with whether to start Anastrozole  

xx

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Hi there

I have been looking for information about this and found your answer, I had exactly the same as you in terms of cancer/DCIS and RT, travelling to the hospital etc and I am now 4 days post RT with a little soreness/tightness “inside” but no sign of blisters or any other horrors. I am quite tired, mostly in the afternoon, but I am 68 years young so I’m not expecting to bounce back quite so quickly! I also look after myself good food/water/exercise (gentle walking atm)/sleep and luckily retired so can do things at my own pace - also have a marvellous husband who looks after me, I’m very lucky. Thanks for putting my mind at rest - there are so many horror stories about after effects.

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Hello @MajesticTiger

I hope you are doing well.

I just found your post and read it with interest. I am facing radiotherapy after HER2 pos diagnosis grade 2 left breast BC.

Thankfully I had complete pathological response following chemo/EC/Phesgo etc and therapeutic mammoplasty. I feel well, the margins were clear.

I am wondering why I still need 5 x radiotherapy within the next 4 weeks if signs of cancer are gone?

Like you wandering if the potential benefits of non recurrence outweighs the potential side effects?

I will also be having herceptin.

I am hoping that you can help me address some of my concerns now you have ? Been through the experience?

Many thanks.

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