Hi @louise67 - I’m sorry you’ve had problems with your surgery and delays to your treatment. Yes - the waiting is hard and I agree it doesn’t necessarily get easier. Something I’ve found helps me is to think of the time as the preparation phase - e.g making sure I am taking enough exercise (where any physical limitations allow), eating a healthy diet and getting the amount of sleep I know I need; building in treats e.g. a walk in nature, maybe ending in a cafe for a cuppa. I know this won’t work for everyone - does anyone else have any tips (this will also help me!)? Thanks!
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Good luck to everyone about to start their radiotherapy, and for those who’ve already started this month - I hope all is going well x
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Hi all, had my first day of radiotherapy today. It was not too bad to be honest. Had to wait quite a while past my appointment because of delays. But when I did go in, the staff were lovely and looked after me well. I was in there about 20 minutes overall, but most of that time was making sure I was in the right position and everything was lined up correct with the little tattoos. The actual radiotherapy was only about 5 minutes. I found it a bit chilly in there, so wear socks. The machine moves around you, but you do not feel anything and it does not touch you. It makes a little bit of noise, but it’s not too bad. Felt a bit lightheaded afterwards going home. But that could be just tiredness as up really early for work, to cover the time off. Got my time schedule for the week, so that’s good. I did have a laugh with the little gown they gave me. It had loads of poppers to do up and reminded me of a large baby grow. I couldn’t get the hang of it and it did look a bit weird once I managed to get it on. Off course, I had done it up wrong! I gave them a laugh 
x
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Hello all, I had my first lot of radiotherapy this afternoon. I’d wrongly assumed they were treating a much smaller area than they actually are & it includes my hypersensitive nipple. So that’s an added worry. Also radiotherapist told me to wait in the waiting area when I was wearing that thick blue gown with no bra or top underneath. It was huge & hanging off me. The waiting area was full of fully clothed people so I refused as I felt exposed & vulnerable. The radiotherapist wasn’t happy with that & said that’s what ‘women’ do. What are other people’s experience? Why should only women be treated in this way & what about protecting dignity? Rant over.
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Hi all. I start 5 days of radio on Friday. Thanks for all your insights. I asked a question about moisturisers on the October thread and had lots of helpful replies too, in case anyone wants to take a look. I feel very lucky, ironically, having breast cancer! Diagnosed in July with invasive lobular, 10mm on mammogram but MRI correctly showed 35mm. WLE & therapeutic mammoplasty from a wonderful woman surgeon. Clear lymph nodes, Oncotype score of 9, so thankfully no chemo. And only 5 days of radio. That’s what I mean by lucky. I realise not everyone is so blessed. Am very concerned about the poor detection of lobular tho. I suspect my 35mm tumour may have been growing for some time as I hadn’t had a mammogram for 6 yrs due to Covid, but anyway it may not have shown up 3 yrs ago. More research definitely needed.
Good luck everyone with managing the side effects of radio - keep our eyes on the prize!
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So sorry you felt so vulnerable @olivepoppy and didn’t get much sympathy. It’s hard isn’t it when we have so many feelings and anxieties anyway. Luckily most of the nurses are more compassionate and sensitive but there are always some maybe having a bad day. I hope you get treated better tomorrow xx
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I really like all your suggestions for dealing with the waiting @cat2 - especially the nature walks & cafes! The other way I deal with it is to talk to everyone I know and read every book I can find. But then I am a retired bookseller so that comes naturally. The Complete Guide to Breast Cancer by Trisha Greenhalgh & Liz O’Riordan has become my bible. I also love Audre Lorde’s Cancer Journals. And I read all the relevant cookbooks. I know everyone is different and may not like talking to all and sundry but I’ve found so many people who have a sister, partner or friend - or themselves - who’ve had bc, that I’ve found valuable to share info with. And also - accept every offer of help! A friend made me promise to get lifts to my radio sessions rather than take the bus. I now have 5 drivers lined up, as my friend has just lost her partner from ovarian cancer and I couldn’t let her down, so have pushed thro my reluctance to ask for help! And everyone really wants to help. Good luck everyone and I hope you get your date soon @louise67 xx
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I’m sorry to hear about your experience @olivepoppy - I also feel vulnerable when I’m in any sort of hospital gown, and others are fully clothed. I hope you have a better experience tomorrow.
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Just another perspective on travelling to radiotherapy. I preferred to try to normalise it and got a (very direct and easy) bus each day there and back. Stopping to treat myself to lunch or coffee in nice places. I had absolutely no problems in the sessions so there was no need for anyone else to drive me or anything like that. I offer this for those of us who maybe don’t have partners or just prefer to handle things this way. I do take a friend to my ‘major’ appointments - where I may get news or have to make a decision - and admit I have struggled to allow that! We are all different and I just wanted to say that for me this is how I’ve handled the radiotherapy and it’s helped me to feel it’s not such a big deal. I had five seasons starting end of October. All power to everyone going through it now x
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I am sorry you felt vulnerable. I was given a large gown too which swamped me. I put a cardigan over it whilst waiting as there was only one other woman in the waiting room with a gown on, and everyone else was fully clothed. It does make you feel like everyone is looking at you. They should have been a bit more sensitive towards you though. I wish you well with your radiotherapy, hugs x
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Hi, I wish you all the very best for your radiotherapy on Friday. I agree, a lot more research is needed and earlier mammograms for younger people. That worried me during covid that you were missing the mammograms. I’m sorry yours took so long. I also read everything! I drive my hubby mad sometimes with all the stuff I read, but I find it helps a lot, I like to know what’s going on. I also talk to everyone…. Too much sometimes. But it is interesting that there are so many people who have a loved one or know someone who is going through this as well.
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@greengoude @tessa11 @cat2 thanks for your supportive comments. I had a much better radiotherapy session this morning- the radiotherapists were more understanding & they put music on which helped. Good luck to everyone else going through this x
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Hi all. Hope radiotherapy is going well for those who have already started. For those who are waiting, it really is not as bad as we imagine. I find the travelling there and back more of a pain. Have got through day three now. The sessions are fine. I have not had any trouble with keeping my arms in one place and the time does go quick. Have got used to the machine moving around you and it is not noisy. Yesterday’s session was on time and everyone was so nice again. I did feel a bit nauseous again and very tired last night. I have been drinking plenty of water before and afterwards. They said this was not a common thing to feel nauseous as it is not near my head or stomach. Will see how it goes and let them know if it continues. It could be just anxiety, though I do not think I have been worried about it. Two more days to go and then it’s all over. Just the Letrozole for 5 years. Have been on them for 5 weeks now and doing ok. Best of luck to you all and hope it all goes well for you xx
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Hi ladies
I’ve now had 6 sessions (out of 20) & wanted to send some reassuring words that it hasn’t proved to be too bad at all 
After the first couple of sessions my neck & left shoulder felt quite stiff & achy (keep practicing the arm exercises, they do help) but that seems to have resolved now as treatment has progressed.
The dreaded popper gown also gave me some difficulty as it kept popping open 
as without any support my ample boobs tend to stray sideways in opposite directions 
Not the best when your sat in a busy waiting room - I now simply don’t put it on until I get called from the main waiting area to go round to the treatment area - I just nip into a changing room on the way then go straight in for my treatment.
As others have said the treatment doesn’t actually take that long, the team spend more time adjusting you to the correct place & double checking measurements.
I have a jelly strip taped in an exact spot (where the tumour was removed & there is an obvious indentation to my breast) which they explained ensures the correct dosage is applied to that area, and a little black box sits lower down in the middle of my chest which monitors my breathing & breath holding
Since yesterday I’ve noticed my breast felt more tender, especially my nipple incision scar & my boob felt warm for some considerable time afterwards but was reassured today that this was normal , I’m moisturising twice daily & hoping that this doesn’t get too much worse considering I still have another 14 sessions to go.
I’ve driven myself daily with no problems & can’t say that I’ve felt any particularly tiredness, so far so good
I’m week 3 of taking Tamoxifen with no obvious side effects
Sending you all lots of love as we complete this final stage xx
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Thank you everyone for your reassurance - and gown advice! - it is really helpful. After an unsuccessful attempt last week to start my treatment (due to my broken shoulder) I have an appointment next week to try out some options to see what will work. I have to admit that the added complication of my shoulder is causing me additional worry - plus the likely delay of 4 weeks before treatment starts (2 weeks before 2nd repositioning and rescan, and 2 weeks for them to do the calculations etc. again). However - the messages from the group are really helping - thanks!
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5 days of radiotherapy completed. All went ok and the staff were really lovely. Glad it’s all over now. They didn’t have a bell to ring, but we celebrated anyway. Now hopefully in remission for 5 years. I wish you all well with your radiotherapy and hope it all goes ok. Hugs to you all xx
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Hi
Anyone else experiencing this length of waiting time for radiotherapy.
I had a lumpectomy on the 31/3, returned for full node clearance on the 11/5, unfortunately allergic reaction to antibiotics so surgeons pulled the plug. After a visit to Leeds allergy testing 12/06 I had full node clearance on 06/07.
Thankfully all 14 nodes were clear. So radiotherapy, onco type score 6, the lovely Letzoral for the next 10 years.
Appointment 28/09 to oncologist to be told December start for treatment, I’ve now been told to expect late January! Is this normal, no one seems worried but it’ll be nearly a year when I was first diagnosed. I didn’t start Letzoral till end of September.
Have totally freaked out, despite BCN reassurances can’t stop crying. Was hoping for fresh start in new year. Am I being selfish, obviously I am not the only one wanting but a 9 month wait for radiotherapy on my boob just doesn’t seem right x x
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Hi everyone. I have my ‘tattoo scan’ on Thursday 16th Nov and am scheduled to have 19 days of radiotherapy. Thank you for whoever set up this thread and all who have commented. It’s reassuring to hear about your experiences
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Hi - I hope all’s going well for everyone. I now have my revised date for my 5 days of radiotherapy - I start on 29 November so I’ll still be a November starter!
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Hi everyone.
I am 43, mastectomy with 20 lymph nodes removed on July, grade 2 invasive lobular BC, Her negative,
I had 5 chemotherapy session, but pneumonitis is a side effects I made now from chemotherapy, so the oncologist said is enough with chemotherapy. I had been in hospital for a week because of this lung inflammation, i start coughing from my first day of chemotherapy, and last 5 weeks from chemotherapy I coughed very badly, I could no longer breathe and walk. I have been home for a few days and they are treating me with steroids, the CT scan shows clear lungs, so the doctor has decided that I can do radiotherapy normally I should have started in January…I’m going for a scan on Monday, hopefully my cough will stop by then, I feel better since the high dose of steroids. I hope everyone is well, I read your posts, we all have an unpleasant experience, but here I always found moral support from the girls.I wish you an easy treatment, and I hug you with love 
@cat2 sorry ti hear about your falling down, hopefully you recover quickly and you can start your treatment.
All my best to all the girls on November’s 2023, and good luck 
@louise67 I am sorry you are going through all this, shows that there is a lot of delay I would ask the oncology team for more information and don’t hesitate to tell them what questions you have and that you are worried I was diagnosed in May, but I had 5 chemotherapy sessions so far, I always asked the oncology team everything and if I repeated myself or stressed them with questions, honestly they were always ready to enlighten me. For those of us in BC treatment it is frustrating to wait and not understand why, and I understand your concern I was also supposed to do 8 chemotherapy sessions but they stopped at 5 because of the adverse reaction that affected my lungs, and now I’m wondering if it’s enough how much chemotherapy did I do, but I asked the oncology team and they explained to me that it more than enough.
Now I am waiting the scans to prepare for radiotherapy.
Don’t worry ask them, and be strong, big hug 
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