I’ve been lurking for ages; big thank you for posters past and present for advice and thoughts. Whenever i’ve had a question, i’ve been able to come to the forum. Its made me feel less alone in this.
I found a lump and different feeling patch in my left breast end of May 2020. Great experience with my local breast care surgical team, apparently i found it early - but had prolonged diagnosis process - biopsies, MRIs and was all very stressful. Grade 2 invasive lobular cancer with Lobular carcinoma in situ (benign but abnormal cells) hormone receptor positive, HER2 negative. At one point, mastectomy was indicated but in the end all tests led to Lumpectomy and SNB in August 2020. I was not due to have chemo but size of tumour was bigger than we thought so decided to do the oncotype test which showed chemo was not indicated. Started Tamoxifen in September.
So then, had radiotherapy early November, the new condensed protocol. i had RT 5 weekdays consecutively on whole breast, straight into 5 days just to the site. Fatigue is a side effect but i’m still feeling it over 2 months later. Its getting me down. What experiences have people had with RT in this condensed way? The evidence is that its just as effective than previous protocols and side effects similar. I’m aware fatigue could just be my body needing to recover from the stress but I’m getting into some negative thinking, i ‘didn’t have chemo and only had a lumpectomy’ and ‘should be feeling better by now’. Trying to be compassionate to myself but its hard!
Totally understand your frustration, try not to worry, some of us get fatigue from radiotherapy and it can last for a few months afterwards but will pass. Eat well, take walks (easing off and going home if/when plod mode kicks in), rest when you need to and do anything you can to assist with good sleep at night.
I had radio (the longer timeframe version, 20 weeks including 5 boosters) 6 years ago and had fatigue for quite awhile after. I used to describe it to friends/partner as being like a mobile phone needing a recharge (starting to bleep, with the bleep getting quieter and quieter the more urgently re-charge is needed)! My partner coined the phrase plod mode…it would come on quite suddenly after a while out walking, a bit like a feeling of hitting a wall re energy.
Worth mentioning it to your GP, just in case there’s something else contributing to fatigue, such as anaemia, which can be checked via a blood test. I kept thinking/assuming it was caused purely by the radio, when somehow my iron levels had dropped significantly since diagnosed (no idea if connected) so I effectively had a double whammy of factors contributing to fatigue.
Recovery and after… I was in Devon doing a lovely cliffy coastal walk while recovering from radio and anaemia, which took me ages and felt quite an effort. Some time later I was back in the same part of Devon again, did the same coastal walk, and my partner commented on the transformation in me, “springing along”! Was a lovely observation to hear!
Be kind and compassionate of yourself, take one day at a time, let your body recover…you may not have had chemo but your body has still been through a lot.
I feel your frustration. I too picked up my tumour early, had oncotype DX after surgery but I had the more conventional 23 cycles radiotherapy ( extra 8 as not all margins were clear). I finished treatment on New Year’s Eve and was convinced that I’d be back at work by now. I share your feeling that it should be ok as we dodged the dreaded chemo.
I think we just have to take it slowly. I’ve sort of started to keep a fatigue diary ( there’s stuff on the Macmillan restore site about this) and am trying to do some movement every day ( as someone who was crazy active before this I struggle to label a walk as “exercise” but I kind of know that this is where I am just now). I’m sure the weather/ time of year/ lack of social opportunities due to covid don’t help.
I think we do indeed have to be patient and kind to our poor bodies that have been through more than we appreciate. The lovely radiotherapists told me that radiotherapy keeps working after the treatment ends. One described each session as like the radiotherapy punching both the cancer cells and your normal cells day after day until the cancer doesn’t get up again…but the normal cells quite reasonably need a bit of rest and kindness too. Don’t know if that helps but it made some sense to me.
@Seabreeze I love your story of springing along the coastal path. I hope to feel that lively again soonish.
My personal reaction to your post is that you need to keep an open mind. I remember a clinical psychologist telling me once that the word he disliked hearing most was “should” and I agree with him.
We are all individual and our responses to the various treatments can’t be predicted. Leaflets can only talk in general terms. So there is no ‘should’ about this. If you are still reeling from the effects of radiotherapy, that is how your body is responding to it. You also have to factor in the huge blow the initial diagnosis, fear, uncertainty, loss of control etc etc and the impact of these on your psyche as well as on your body. Added up, it’s a LOT.
I’m still experiencing fatigue 18 months on from radiotherapy (not the condensed therapy you have received). I thought radiotherapy was a doddle after chemo and had no effects apart from a small itchy patch. The fatigue hit me about 2 months later, at the same time as I experienced burning pain in my breast muscle, which felt like delayed microwaving. This delay of side effects is also common.
Two months, after all you have been through, is nothing. I’d say try not to set yourself up to fail. By all means set yourself targets, but don’t beat yourself up as a failure if you struggle. There’s nothing shameful about fatigue - it’s a genuine physiological and psychological phenomenon. It may last weeks, months, years - it all depends on the individual. Your breast care nurse might be a good person to talk it through with as she’ll know your full cancer history. She may point out that Tamoxifen itself can also cause fatigue! (I’ve just checked and it does. Everything does as far as I can see). If not, talking to one of the nurses at the number above may make you feel more at ease with the problem:
So yes, be compassionate but also be patient - it’s very early days for you and, even if you feel you got off lightly as regards treatment, I don’t - you had a cancer diagnosis and that’s enough in my book!
I hope you’re starting to feel a bit better and have managed to access some support from Maggie’s.
I had the short condensed in December and still feeling the need for a nap most afternoons. Just sitting down to watch a little documentary and start dozing off. Had surgery and chemo beforehand. Was told the radiotherapy would result in a different type of tiredness to the chemo, and I can agree with that. It feels the radiotherapy tiredness is more chronic, as opposed to the intense immediate drainingfeeling from the chemo I experienced. I have been told to expect tiredness to continue for at least six months, but to contact BCN if feel the need.