Breast Cancer Now Forum

Hi Rebecca, I have my first yearly mammogram on Tuesday. Ironically on Friday I’ve got the first of a 6 week Fear of Recurrence Group. I am really nervous about the mammogram. it was high grade DCIS I had, and I was told it had a high Recurrence rate. I know I’m likely worrying over nothing as I had radiotherapy, but I can’t get the fear out of my head. ... View more

Sue and Treeze, thank you both so much. Sorry for delay in replying, I've had a couple of days where I've been incapable of anything much at all. You have both given me so much reassurance. Yes, the docs can tell you it's 'normal' to be tired, but they don't make clear how utterly debilitating it can be. And Treeze, yes, you're right. I should erase "should" from my vocabulary! Thanks both of you! ... View more

Hi Ali, That's really reassuring thank you. That makes sense about the pain too. I think it's other people's comments too about how everything is "fine" now that I've finished treatment and so I'll be "fine" too, but I don't feel that way and they can't understand why! Xx ... View more

Also does anyone have shooting pains in their affected breast? Not constant, but done days much worse than others? ... View more

I finished rads late December and I'm still feeling rubbish. I had a bad skin reaction that is only starting to clear now. I've been changing dressings twice daily up to two weeks ago. The nurse from the Beatson (Glasgow) told me this is early days for recovery and that I can expect to still be very tired. My BCN told me similar - she said "it's ONLY April", when I was saying "but it's now April!". I know they're the ones to be listening to and I get the 'everyone's different' thing but most folk on here seem a bit better by 4 months on. Think I'm just finding the whole thing frustrating coz I'm done with treatment and it's all been very positive- but I still feel so 'done'! ... View more

Thanks Dizzybee thats reassuring that it can take months. I don't want it to obviously, but at least knowing that this is 'normal' helps! Stefa, I'm exactly the same, trying to explain this to friends and family who think that I'm 'ok now' because I've finished rads. I'm sure some of them think I'm being melodramatic when I say I struggle to move from the sofa. I'm 45 and I'm sure they're fed up listening to me saying I'm tired (from other health issues) and so they see this as the same - it isn't! I thought I knew what 'tired' was!! I've also had an infection in the rads site. Changing dressings twice a day still. I'm more than ready to feel better - but feel bad saying that as I know I've been really fortunate! ... View more

I'm nearly 6 weeks post rads and I actually feel the tiredness is getting worse, not better. I don't sleep much at night due to other health issues (2-3 hours is usual) but for the past week/10 days I've been going from my bed to the sofa and really struggling to move off it! I've been drinking lots of water as per advice but this exhaustion is awful. Should it not be improving by now?? ... View more

Thanks Ali, Yeah I've been very emotional too - but I also have anxiety and PTSD (which wasn't helped by having to strip to the waist all the time throughout this!!) so I wasn't sure what my particularly emotional state was down to. Might try to phone for a practice nurse appointment tomorrow - or today actually now - as it's looking a bit yellow on the dressing and it's coming through the dressing. Very sore. I hope you continue not to be tired or sore! Thanks!! ... View more

Hi I'm 2.5 weeks post 15 rads for high grade DCIS. Feeling so very tired but also my skin is still sore and weepy? Has anyone else had this? Thanks!! ... View more

Thank you all! It's reassuring to know that all this is normal. Think I though that as I hadn't needed chemo, then I should be feeling better than this - like I wasn't as badly off as I've been so lucky, so why am I feeling like this? Especially the down part and the fatigue. I am drinking a lot of water as well as trying to go for a walk each day as I've been told that can help. Ladybowler, no I don't work just now due to other health issues (I have PTSD) and so I get counselling for that anyway - had to go private for that - nhs were offering no PTSD help! I might try and bring up how I'm feeling post treatment etc. As it's so expensive, I tend to just stick to the reason I'm there but it might help to verbalise this too. Don't have my own family and my sister and other extended family are, at closest, 300 miles away. So I suppose I feel quite on my own. I have great friends but I don't like to burden them. Thank you!!! ... View more

I'm feeling a bit of a fraud reading this thread. I finished 15 rads a week ago, after a WLE for High Grade DCIS, and I cannot believe how exhausted I feel. I only sleep about 2-3 hours a night anyway (have done for years) and so I'm used to feeling tired - but this is on a whole other level. The radiographer also told me that this isn't a tiredness that can be helped by sleep. My skin is also breaking out much more now than it did during treatment and I have dressings etc to help. I also have what feels like a dull pain within my breast. I've also been feeling pretty down. But I'm also so very aware of how lucky I've been. There was nothing invasive so I didn't need chemo, so should I be feeling this bad? How long does it last? ... View more

Really silly question alert!! I've only had 2 sessions, day 3 this afternoon, but I felt a wee bit nauseous last night. Could that possibly be the rads or is it just that I felt nauseous anyway? I think when you just don't know what to expect you don't know what's causing what. Sorry if this is really daft! ... View more

Thanks Janey, Not sure about my BCN, as she always gave me the impression that my many questions were an overreaction as I had high grade DCIS and not invasive cancer. I was told by her over and over, "This really isn't anything to worry about", but I was worried. And I had questions as I'd never heard of DCIS before. I got more questions answered by the BC nurses on the BCC helpline. I'll see how I get on today and if it's the same female that it's been the last couple of days, I'll maybe try to say something. I feel like I'm admitting pathetic weakness though. Getting some help for it so yes, that might be another avenue. Thanks Janey! ... View more

Thanks for this! I've got day 3 today and it's been a male and female pairing that I've seen so far. Really lovely people, but I have PTSD from childhood abuse and a teenage attack and this whole thing is freaking me out. I had a flashback during my planning scan and the radiographer said she'd write that on my notes. I find the process of lying exposed in a wide open area very triggering. I hadn't said anything as I don't want to be a ' problem patient' and I'd also be concerned that, if I try to explain the problem, I might get upset. ... View more

Thanks for the welcome. Glad it's not just be bothered by the 'open' area Beth123, thanks for that. I'm getting my rads in the Beatson in Glasgow. Dizzybee, I have to change machines on Friday as the one I'm on is getting its MOT but was moved today too as same machine had broken down. Yeah Beth123, I've been trying not to listen to folk who seem to delight in telling you that "so and so had radiotherapy and had a hell of a time with it" I have shut a few of those folk down. I mean how can they possibly think that's helpful?!? Some folk!!! I just wondered if anyone who *actually* knows had ever experienced the pain I was told about. Other thing I've been finding is that my back is really sore each night - think from the awkward position you're in and having to stay so still. That's manageable though. This whole thing is like a whole other world, with its very own language and emotions. Bizarre!! ... View more

Hi, hope it's ok to gatecrash this thread. I'm on day 2 of 15. Today was easier than yesterday as there was less of the unknown. Radiographer said side effects start approx 5-8 treatments in. I know about the 'sunburn' and tiredness but she also mentioned possible pain in my chest wall? Has anyone else experienced that? Also finding the treatment hard going as I have PTSD and the treatment area is very open as though anyone can just walk in ( no doors) makes me very anxious! ... View more

Hi lorac170 That's very reassuring, thank you! Xx ... View more

I've been scrolling through the Radiotherapy topics to see if anyone has posted anything to do with having holidays or whatever previously planned and now having to have radiotherapy. I had a WLE for High Grade DCIS with clear margins on 21st Sept and I'm now waiting for a rads planning meeting and supposedly at that point I'll get a date to start. I'm due to be going away for a long weekend with my sister in mid-Nov and I understand that, with the guidelines for Scotland, that's bang when I *should* be due to start treatment. Do we have any say in being able to delay? This isn't a weekend that can be rescheduled or worked around, and I'd really like to go and not let her down, but don't know how much (if any) say we have. I realise that this might sound a really trivial thing to be concerned about but I want to go and I do not want to let my sister down. She came up to Glasgow from Hampshire to be around for me when I had my surgery and as neither of us have families of our own, she's kind of  IT family wise! ... View more

Thank you all! I've had various family and friends telling me stories of friends they know who've had radiotherapy; some found it fine with no real problems while others had a tough time. I'm trying to cut off folk who start telling me as I'd rather not know - ie, better to take it as it comes. Ali49 - Yes, that's it exactly. I'm so relieved that there's no invasion but I'm still feeling very emotional. My Mum had radiotherapy when I was young and we lost her, so maybe it's partly association with that. Feels kind of weird to be going through something my Mum did. I understand the necessity of having radiotherapy - I had just hoped the surgery would be enough. I like these percentages 76Ag, but yeah, I think I'm still likely to worry about recurrance. Maybe that's natural. ... View more