Hi Everyone
Thought I would start a post for anyone going through treatment this month.
I had my Radiotherapy planning session yesterday where I had my scan and got my first tattoo! I start 5 days of Radiotherapy in a couple of weeks.
Anyone else having radiotherapy this month?
?
Sam x
I expect to be, but it won’t be confirmed until Wednesday. I think that’s my radiotherapy planning appt.
Kelly x
I should have started on the last day of May, but I got a phone call at 4.30 the day before to say that the plan was still with physics and they needed to put the start back by a day. They explained that my treatment plan is complicated, I had been told in the breast clinic 15 sessions, plus 5 for my lymph nodes (I had an axillary clearance after 2 positive were found after my sentinel node biopsy). The way it was explained I’d expected to be having 15 sessions, then a further 5, but they’ve been combined and it’s still just 15 trips, but with more happening each visit.
I started on 1st June, and so far it’s fine. The table and position isn’t comfortable, but it’s tolerable. It does help if you’re happy having your arm above your head, so to anyone starting I’d say work on that if you’re still stiff post op.
Mine is left side so I have to do the breath hold. I get a little screen with a green bar at the top so that I can see how I’m doing which is really helpful. So far I’ve managed to hold my breath for the whole burst about half the time, and the other half I’ve dropped out part way through, which isn’t a problem, the machine just stops and then I start again.
The staff are lovely, I’ve had 2 sessions, different rooms and different teams each time. Each room has a decorative panel replacing the ceiling panels above the equipment, nice relaxing scenes which are nice when I can see them, but they do get blocked out by the equipment. It’s a nice touch however especially when being put into position.
The hospital have a cancer wellbeing centre very close to the radiotherapy department, and I’ve headed there afterwards and get given coffee, and a comfy sofa to chill and recover before driving home, it’s a wonderful facility, and I’d say well worth checking if anything similar is offered for anyone else starting treatment elsewhere.
To all the lovely ladies having Radiotherapy wishing you lots of luck, drink plenty of water, use lots of cream.
Health and happiness to you all, keep posting and be positive.
biggest hugs Tili 
Hi everyone,
I am starting 5 days of whole breast RT on Monday. I have have had a therapeutic mammoplasty in January followed by further surgery as margins not clear in March. I had hoped to avoid RT and to be fair was given a choice but doing RT takes me from 6% chance of recurrence to less than 1%.
I am not sure what to expect. I am planning on continuing to work although planning is hard as won’t get appointments until tomorrow. Moisturiser and soft crop tops have been purchased. Am having nightmares about it though.
I hope everyone is getting on okay?
Day 1 of 5
i had my first radiotherapy session today. It all went okay, everyone was lovely. They did try and encourage me to have some time off work though to help reduce the fatigue later. I am trying to have a quiet working week (mostly report writing rather than meetings). I have also decided not to cycle this week (usually do at least 3 hours training on a smart bike) and just walk and yoga.
I have a question though as 5.5 hours after my first session I am feeling quite uncomfortable- my breast feels hot itchy and a bit sore. I was not expecting this so soon! I suppose I am a bit worried that they have given me too high a dose …is that possible?
??? I’ve finished my 15 sessions. Whilst it wasn’t too awful I’m pleased to not have the daily trek to the hospital every day.
I had my breast and lymph nodes blasted, and at the moment my breast is a nice shade of pink, but around my collar bone is redder and itchy. They gave me hydrocortisone for the red areas, and flamigel for everywhere else. Annoyingly the red area isn’t completely covered by clothes, so I’m having to be really careful going outside in this sun. I picked up a gorgeous parasol at a steampunk fair a few years ago, and it’s really coming into its own now.
Im also getting a fair bit of fatigue, I’ll sit down and just doze off, but if that’s what my body needs then I’m not fighting it.
One thing I hadn’t anticipated was getting a ‘what now’ feeling. I’ve finished my active treatment, other than one Letrazole tablet a day. I’ve got follow up phone calls from radiotherapy, but no more appointments to wait for at the moment, I had a review meeting a couple of days before the end of treatment and they recommend attending their moving on course, so it’s back to the hospital next week for that, which hopefully will help with that.
I started my Radiotherapy on Wednesday, so now have 12 more to do. The room can be cold. It is quite hard to stay still with arms above head. The staff leave you on your own in the room. I have not noticed any change to my skin yet.
I am hoping I do not get too fatigued, as I am carer for my Mum who is wheelchair bound.
You’re right about the room being on the cold side. I found I was more comfortable taking my shoes off, so always made sure I had warm socks on. I’ve read other people saying they wore gloves.
I found I didn’t have a good awareness of time laid there. After a few sessions I got used to the various positions the machine moves into so knew how far through I was, always nice when I knew it was the last one.
Yay - well done for finishing.
I agree that it feels weird just stopping. I have a telephone appointment with my oncologist on 11th October but that is it.
all feels like a dream to be honest. I am
not sure I have processed what my body has been through.
I have been okay this week although was told my side effects could get worse for 10-14 days. My boob is much less hot and swollen this week. Just a bit more tired than normal. I am trying to do gentle exercise such as walking, cycling and yoga.
I hope you skin reactions settle soon and the fatigue eases. X
You have made a good start. My boob turned nuclear (swollen and throbbing) straight away but I was told I am unusual.
I think you probably will be a little fatigued. I have worked all through but last Monday I was on a work for 2 hours then 40 minute rest cycle. They say gentle exercise helps and I think this is right. Have been doing very gentle yoga with Adriene. Keeping busy is somehow better. Sitting (as I do at work) allows the drowsiness to hit. Just take it a bit easier than normal. Going to the hospital also very wearing (I had a 3 hour round trip - some people have much worse). Good luck!
Hiya!
I am due to finish radiotherapy on Tuesday and like you I am surprised on how anxious i feel about this being the end of “active” treatment. I keep getting quite upset about it. It feels very surreal.
I am going to be having a PET scan and follow ups about medication but to not be seeing and going to hospital regularly feels strange.
Hi there BC Warriors
I’m due to start my radiotherapy tomorrow and firstly want to say thank you to you all for providing a little insight over what to expect. I’m especially concerned about the potential fatigue as I am planning to carry on working. Work have been amazing and have told me to do what I need to do insofar as getting sorted is concerned but work is allowing me to focus on other things rather than the “dark thoughts” that sometimes pop in my head.
I’ve also started tamoxifen and so far I seem to be ok. Consultants and Radiology team has been fabulous too.
Just a quick question though as see lots mention about to soreness which seems to happen quite quickly during radiotherapy. What type of clothing would you recommend to help. I guess soft cotton or similar loose clothing? Is there anything else I should be aware of that they don’t tell you?
Hi MiLou
I wasn’t too tired for the first fortnight, I’m now one week post treatment and am still finding I fall asleep in the afternoon, but I think it’s yet another thing that’s very variable. I think I’d cope with work if I could come home and fall asleep, but would struggle to work all day and then have to sort out dinner etc. Once you see how you feel perhaps finishing early would be a good compromise?
I’m finding my bra rubs my collar bone, and my scars, so have stopped wearing one until things settle down (and use scarfs to cover up, especially as I’m now very lopsided)
I’ve discovered bamboo fabric, its wonderful, soft, smooth and wicks sweat away. It doesn’t irritate at all, even on my most sensitive spots. I’ve bought half a dozen T-shirts and tops. I bought from a company called Taking Shape (they do free delivery and returns) and keep going back for more.
good luck, I’m sure it will go well. ??
hi @MiLou
I have worked all the way through (although fewer hours during actual treatment due to the travel / treatment time). I have been able to work at home and the first week after treatment I did have a few lie downs to get through the day.
The swelling soreness went for me once treatment stopped - I was just unlucky I think to have a big response - lots of people have no symptoms for a couple of weeks.
I am tired and have cut back on exercise a bit (I usually do a lot and was back in routine post surgery) as it wiped me out. I agree that it is hard to do everything I normally do but I can do most things. Am now 13 days post last treatment so hoping tiredness will begin to ease. Skin is fine.
Sloggi zero feel bras have been fab - I may never wear anything else! And aveeno blue has been great for me.
good luck today. Hope all goes smoothly Sx
Well, I finally had my first session, sneaking it right before the month ended, on Friday.
Day one was rough. The journey was horrendous. There were admin problems - scheduling and communication - but quickly resolved. Physically it was easy and I knew what to expect. Luckily the arm position is currently comfortable enough. I wasn’t with my assigned team, but this team was polite and professional if a little brusque and dismissive. I was already pretty well informed, but they skipped the information meeting and didn’t have any advice for looking after myself during treatment, and now I vaguely feel there are things I should know that I don’t. I think it all just got very real again, in a way that had faded since my WLE, SNB and follow up.
I felt very overwhelmed about midway through the treatment, quite disoriented in space, and I couldn’t keep a few tears from rolling down into my ears during the rest of the session. Luckily I have a friend quite near the hospital so I was able to break my journey, stop for a coffee and put myself back together.
Side effects-wise, the treated breast was almost immediately warm to the touch and slightly pink, slightly stingy. By the next day, the nipple was quite sore at times. I’m currently finding it more comfortable to be in a soft bra than bare, because it’s sore tho I don’t have any chaffing, but gravity is cruel and causes some throbbing, and the occasional sting. I had two days off and things improved a little.
Day 2 was entirely different. The journey was okay. There was a queue for parking but I had time and the team looking after the car park were so organised and efficient. I was with my assigned team and they were lovely and answered the questions that hadn’t been properly addressed on Friday. The breast is a little pinker, and back to the same soreness as Day 1.
Today was simple and smooth, I was feeling positive. Poor breast is pinker again, as is the nipple. I’ve made some fresh aloe soaked cloths and put them in the fridge. I have some Biafine that helped a lot on Sunday, before I learned I can’t use anything with paraffin during the treatment. Luckily I’d washed it off before the session. I’m looking forward to using it once I’m done. In the meantime, cold aloe compresses will do the trick. Other than the nipple, it’s about as sore as a fairly bad sunburn. I don’t know if I’m fatigued because I’m not sleeping well. Either way, I’m moderately knackered, but without the draginess of fatigue.
How is everyone doing? Side effects? Finished your RT course or counting down the days?
Kelly xoxo
Hi Kelle
I finished my radiotherapy 2 weeks ago. I think (?) the side effects have just about peaked, and I think I got through ok. My skin is very pink all round my breast, and there’s a very red area around my collar bone. I’m not sitting down and falling asleep quite so often, but if I overdo things one day I certainly feel it the next. My biggest problem is uncomfortable swelling under my arm which doesn’t want to go down, but I’ve still got a full range of movement, and it’s not painful, just gets in the way.
Sorry to hear your first day wasn’t good, the idea of having your own team sounds great, I had a variety of people, all nice, but some that I was pleased to see. There were 2 receptionists, and one always greeted people by name when they came in, it always felt so nice to be a person not just another patient.
My hospital had a cancer well-being centre just across the road from the radiotherapy unit, and I dropped in there for a place to chill a few times after treatment, it was a really nice space, with free coffee and I’ve signed up for an art therapy course to help me move on now I’ve finished active treatment.
My instructions were to use a moisturiser from a list (mainly no SLS or perfume) but as my skin got pinker I was given flamigel, and hydrocortisone for the red itchy patch. Flamigel seemed much better moisturiser, if your skin isn’t feeling great I’d have a chat to your team about it.
Good luck with the rest of the sessions
Day 5 for me today! A total of 2 1/2 hour road trip for a 20 min session but I know I’m in good hands. So far I’ve been ok. First day I had a warm glowing feeling but that soon went down. I do have a “irritation” feeling in the tissue for a period of time but I guess that’s it working. Luckily for me my skin is still ok which given I’m a pale & pasty red head I was expecting total “sun burn”!! (Aveeno blue is being applied though as I’m expecting the burn at some point!!!)
I’ve had different radiologists on a couple of the sessions but they’ve all been really friendly and amazingly helpful and I saw consultant yesterday and he’s pleased with sessions so far so it’s fingers crossed and cracking on!! I’m trying to get morning sessions and doing a couple of hours work in the afternoon to give me a focus on things other than appointments etc but again I’ve been lucky with work telling me to do what I need to do and they’re so supportive.
Yesterday also included a physio appointment with exercises to prevent or minimise Lymphoedema and what to do - also with tips on moisturising !
Hope everyone is ok and love to all! Xx
Yay. Well done for finishing.
I am now 2.5 weeks since finishing. I had a lot of reaction in my boob during the week - a bit like you but this Gad now settled. Occasionally I am itchy and take antihistamine. Aveeno has helped I think. Like you I am in soft bras as it is more comfortable than nothing!
Fatigue is the worst. Definitely have a strange kind of tiredness which washes over me at points. I need to pace myself a little better but obviously haven’t as am helping son move house and am preparing to go travelling for 3 months next Tuesday so have had to get everything finish at work for 3 months and handover. That’s without route planning and packing!
I hope you make a really quick recovery and can get on with life. ?
Hi all,
Finished on Thursday and actually very happy with skin so far. Fresh aloe helped a lot when it was actively very hot and pink on Wednesday and it has stayed looking better since then. Aveeno (mostly mornings) and Eucerin (mostly evenings) regularly to moisturise. There are a few odd pains now and then and the nipple is sore, but much better than last weekend.
I have been walloped with fatigue and even some lightheadedness over the weekend. So much so that I wondered if I was ill. However my husband wisely talked me down. I had a lot of trouble sleeping last week and some nights only got 2 or 3 hours. Plus 2-3 hours in the car each day, the hospital experience in general and the relief of being done and it starts to make sense. Oh and my cycle started the day I finished. And I experience fatigue at times with hypothyroidism. Put all that together and it makes sense, I guess.
Today has been a little better, so I’m interested to see if it settles down into any kind of pattern.
Kelly xx