stopping rads

[Martina]

Hated that moment when the technicians left the room. I also discovered the intercom was only one way! They said I could waggle my fingers to get their attention instead. Luckily I didn't have to test that out. It doesn't do that much for reassurance.

[Martina]

Huge sympathy with this. I finally decided to take the 5-day regimen but it was delayed by a massive dilemma because I thought the recurrence risk was low and was horrified by the cold explanation of the radiotherapy side effects.

[Marla13]

Hi Vaneysha,

Huge respect for you for making a decision that you feel happy with. I know that the evidence in favour of radiotherapy for preventing recurrence is strong, but we all need to remember that we have a choice. I only just started my radiotherapy yesterday & I honestly do not know how I will manage another 19 days because I have one bad shoulder and my other (surgery side) shoulder was not happy *at all* during treatment yesterday, and like you (re-your concerns re-side effects and mental health), I am not prepared to sacrifice the functioning of my two shoulders for this treatment. So, I, too, am considering whether I can do this. We all come into this with different pre-existing health conditions, be they mental, or physical & we need to remind ourselves (because the cancer teams tend not to do this) that, for many of us, there *will* be costs to other aspects of our health & we need to weigh up against the cancer treatment. I respect you for your decision. 

xxxx

[Vaneysha]

Thank you everyone for your replies. 

I have decided to stop radiotherapy. I went in today and had a little cry and I feel like I've made the right decision for me. Even though I know it isn't the recommended course of action, it's the right thing for me and my mental health at this time. Maybe in the future I'll regret it but I also think I'll be living in fear of cancer returning regardless of whether I get all the treatment. The current fear of long term damage for me is greater than the fear of return, and I'd be facing that fear of return in either situation. At least this way I have limited the damage that rads can do. I am still obviously really sore, I know that will continue for a few weeks yet.

I am also finally going to be getting help for my mental health.

I don't think my decision to stop now is something I'd ever recommend. But for me it was between following my treatment plan despite my huge reservations, and genuinely having a nervous breakdown, or stopping now and limiting the damage. Whether I made the right decision for my health long term remains to be seen, and besides, that risk of return is always there regardless of whether I'd taken all the treatment or not. 

[Sandpiper]

Hi Vaneysha

Sorry you're having such a rough time of it - it sounds like it's been a long, long, tough journey so far and very draining physically and emotionally. 

Just a quick note re any longer term after effects of rads. I was worried about that too after reading the leaflets. It was the part of the treatment I was most worried about - I didn't have chemo luckily, so wasn't drained going into radiotherapy. I had a talk with my breast care nurse about physical changes and she was reassuring.  I found going through radiotherapy a strange and emotional time - it seemed to last for ever. I was tired and felt very flat in the weeks after finishing but recovered gradually without really noticing. I am glad now that I did go through it.

I finished rads last October and haven't suffered any of the changes like shrinking, permanent colour changes or anything like that. The changes I have, scar tissue, are the result of the surgery and don't notice.

I hope that whatever you decide to do, you find time to rest and to begin to recover.

Sandpiper

x

[Jaybro]

Hi Vaneysha 

I can’t think of any other disease where the treatment makes you feel worse than the actual disease! A lot of women suffer badly through radiotherapy (for me, it was chemo - I was a zombie AND I got neutropoenic sepsis). I just wanted to say that my oncologist told me part-way through chemo when I was really struggling, that a lot of oncologists aren’t fully convinced by the evidence for chemo (great) but that the evidence that radiotherapy works - makes a significant contribution to preventing the recurrence of breast cancer - is incontrovertible. Bear it in mind when you decide. 

My GP put me on Gabapentin to help with the (delayed) pain from radiotherapy and then pregabalin, less effective on the pain but good for anxiety. It’s worth asking the hospital what pain relief they recommend and hope they don’t say paracetamol. If they do, get onto your GP urgently. As for emotional support, it’s tough right now because the support services aren’t available because of the pandemic but, again, your GP should be able to help. Mine did once they understood just how awful I felt.

In the end, it’s your body and your choice. You know how much more you can take and counting the days is pointless when you know radiotherapy continues to work for weeks after. However, try to make an informed choice rather than an emotional one. Best of luck xx

[Jill1998]

Yes it is rubbish , I cried most of my sessions I hated feeling so vulnerable and exposed .I had shooting pains and redness from after the first session and my boob was a bit of a mess at the end but despite that I have to say I healed very quickly and the tanned boob effect didn't last that long either .Im glad I saw it through and I felt the gains in terms of reducing the chances of re-occurrence was worth it my case but it's a very personal decision .Ive spoken to quite a few ladies who have felt the same as you so I'm sure your team will have have had these conversations before -don't feel guilty for feeling the way you do but please talk it through before making a decision x 

[Vaneysha]

Thanks Jill it really is quite validating to hear someone say it IS rubbish, I've had so many people say ill find it easy compared with chemo but it's not and I'm so so so tired of it all. It's also really good to hear from someone who says they don't feel like the appearance has been affected, all I seem to read is how people are left with permanent skin darkening. I've got awful shooting pains and aching heavy boob already, it's as bad as it was after surgery tbh and that was back in October. And still so much longer left to go and more damage to be done if I continue. It seems mental to give up at the (nearly, excluding herceptin) hurdle but like you say I think this really is the last straw and I'm so tired.

Think I just need to vent really - I am petrified of going in tomorrow and telling them I don't want any more as I've been nothing but difficult since my diagnosis and I hate being this way but I'm just so fed up now x

[Jill1998]

I found rads very challenging ,the sessions made me feel incredibly vulnerable and abandoned to dwell on my situation every time the technicians left the room .I was also exhausted by session 10

.Increasing the amount of water I drank made a big difference to my fatigue and mood -rads make you very dehydrated .I also had a very red boob after just 3 seasons and ended with broken skin and a very sore boob - it was miserable but it cleared up very quickly after my last session and although my boob looked a bit suntanned for a while afterwards I can't say it affected the appearance in any other way once the skin had healed .Its understandable that you are exhausted after all the treatment you've had .Rads are not " a breeze " for a lot of us - they can be the last straw - but you are nearly there - each session is a step closer to moving forward and starting to heal.Talk to your team you will not be the first person to feel this way by any means. Jill x

[Vaneysha]

I know this isn't the best place to ask a question like this and I will be speaking to my radiotherapy team tomorrow, and probably calling the Macmillan line tomorrow before my appointment as well (although I'm really rubbish on the phone so might bail out).

I'm 7...or 8...I've lost count... of 15 sessions of breast radiotherapy in. I already have a lot of pain, swelling, redness etc and severe fatigue. I'm honestly done. I don't want any more. I still have almost two more weeks of this to go, in total, and I know the pain and reactions peak two weeks after treatment finishes. I can't handle any more. I struggled badly through chemo, I'm struggling with herceptin, my anxiety is at its limit. I have no emotional support. I didn't really before covid and I certainly don't now.

I'm petrified of the permanent changes in size, colour, shape, skin. I feel like if I stop now then I reduce those chances. Is some radiotherapy better than none? I felt like I was forced into even having it in the first place through fear, same as the chemo, I never wanted it at all, and I find myself already struggling with the very things I was told were going to be "mild", "not as bad as chemo", "if you can get through chemo you'll find rads a breeze". I didn't even make it through all of chemo, they stopped it early. I'm not finding rads a breeze. I'm really scared of what is going to happen to my appearance. I'm 33 and it genuinely bothers me.

Is stopping early a bad idea?

I feel like they're going to roll their eyes at me tomorrow and dismiss my concerns because I did the same thing after one session of chemotherapy - I came in the next week, said I didn't want any more, there was some vague encouragement for me to carry on which I refused and then the next day I freaked out and asked to resume it.

I went in to my radiotherapy session today wanting to talk to them about stopping but felt stupid so just went along with it, cried throughout the procedure and then got out of there. Since coming home I've felt even more sure that I want to stop.

Sorry. I know I've written a lot. I know no one can really give me an answer and I need to speak to an expert. Just after any support really. My mental health is in the toilet and I'm in pain and just really scared. I don't want the cancer to come back but I just can't handle any more of this.