Kiwirunner

Hi just read your post asking about Radiotherapy  tiredness, I think it.depends on how your body copes with it. I'm due to start 4 weeks of Radiotherapy  Monday/Friday  on the 10th March and ive recently had the CT scan and tattoo dots  done,well one tattoo dot as I really didn't want any,they were going to.do two,but I said " I could cope with one  so.i was given one at the side ,so it doesn't show,plus a pen mark ( which is covered by tape) in the middle of my chest.  I did ask the question about tiredness, and was told it wouldn't make you feel.that tired on the first week,but tiredness if your going to get it, will start on the second week,as would any of the other side effects if you was to get any. So that's all i know for now .Was also told that if my.skin gets sore, to use a unperfumed body lotion or cream ,so ive orderd some E45 body lotion, which im hoping will help if I.do get sore from.the Radiotherapy. .Hope all goes well.for.us and anyone who is also having Radiotherapy.  X

Hi [@Jassoscared]‍ thanks for your message. Good tip re the E45 cream - thanks for that. Interesting to hear you managed with just one tattoo dot. Was it painful? I have never wanted to have a tattoo so needing those tattoo dots for radiotherapy was news to me until yesterday when they explained it to me. I'm going to go with it as I hope that means everything is lined up well. Just another thing to deal with eh?! New developments on this cancer roller coaster every time. Sending lots of good wishes to you too as you go forward with your radiotherapy xx

Thanks [@Jeet123]‍ for letting me know about your experience. So hard to predict isn't it but glad to hear it has been OK for you. I'm surprised at how tired I have been after the surgery and my breast has started aching today on my first day back at work - I spend so much of the day typing emails and I wonder it it is just having the low level sensation of pulling as a result. Feels weird being back at work particuarly as I only had the cancer confirmed on Friday after two long months of tests - the surgery was treated as the definitive biopsy in the end. So much to catch up on and I'm not in the mood. A colleague emailed and said they hope I had a nice time off. If only they knew! Hope you are doing OK with your whole situation. Take care xx

Hi [@Jassoscared]‍ thanks so much for the message. That is quite a milestone to get your first session out of the way and now you can keep ticking them off and counting them down. 1 down, 14 to go. Before you know it, it will be 14 down and 1 to go :happy:

Thanks too for the really useful info re the creams. That sort of detail is so helpful. I asked about cream to use at my planning session and they said "any  body lotion you normally use is fine - you don't want to use one you are not familiar with". That seemed very loose guidance, particularly as you were told not to use anything with SLS in it and you had bought two bottles already - boo. Weird how the guidance seems to differ so much?! Will be keen to hear what they tell you when you ask today.

I'm fine at moment - quite good to have a mental break from all the regular appts as nothing now until radiotherapy starts on 29 March. Apart from having a root canal on Monday - dreading that more than all the breast cancer treatment to be honest haha.

Hope it goes well today xx

Hi 

They said to me Diprobase moisturize is quite good but have been using the Dermol lotion and that is good too !!

Jeet 123

Thanks [@Jeet123]‍ xx

Kiwirunner 

Hi ,hope your trip to the dreaded dentist went well ,and your tratment was as painless as it could be, I to always dread the dentist, I can't stand the feeling of having fingers and thing's in my mouth, as I can never seem to open wide enough lol,and i end up gagging. 

Well as for the E45 lotion  and another lotion I got Palmers coco butter,  so I took them both in ,and was told both were good to use. But I told them I'd googled the ingredients in the E45 lotion and it said one ingredient in the lotion was the same as the SLS, they disagreed and said it was fine to use. But I'd already seen a post on this Cancer chat forum where someone had posted the E45 lotion was not good to use as it aggregated the skin after radiotherapy, but the E45 cream not the lotion was better to use.  So I don't want to take any chances and have ordered a tub of E45 Cream . I've done 3 Radiotherapy sessions  now and have been using the Palmers cocoa butter, and its been fine .I was told not to use to much ,and dont rub your skin to hard, try to pat the creams or. lotions in,and dont put it on near the time you have Radiotherapy, use it once early in the morning  and once before bedtime..when showering  or having baths you can use soaps, shower gell but make sure you rinse your skin thoughrly, and never use very hot water ,just like warm water   The first Radiotherapy session took a while as they have to set it all up and get everything so precise.  I didnt feel a thing.  The second one was quicker 20mins.  Felt tired but i dont sleep well ,so could of been that. The 3rd  one was a bit tricky, as they got me onto  the bit where you lay, and got me into the  correct position , you lay with the arm up and into a clip  that holds your arm and wrist in place  ,obviously the side your bresst cancer was on ,mine was on my right side, so my right arm has to be held back above my head.  Well they go behind the screen and it took ages just lying there ,you have to be so still  you can't move at all. And then they cone into the room and they said I was not in the correct position I was half a millimetre out.  So they push my body this way and that only slightly, and move my arm a tiny bit ,move the board im lying on ( its movable) and take all the measurements again.  Then go behind the screen ,again taking ages, I'm getting very uncomfortable by this time but dare not move, then they come into the room again as I'm still half a millimetre out.  And it all had to be repeated again. ,i had an itch on my hip ,and they itched it for me  lol, as your not allowed to move an inch lol, it felt very strange someone else scratching my itch, I had to keep saying up a bit, down a bit  over a bit, yes you've got it, and they scratched my itch away lol.They go behind the screen for what seems like ages, checking evetything is lined up, and bingo, the machine starts up and starts to rotatate and do its thing. I must admit my arm and shoulder and hand was uncomfortable as i have lymphedema in my right wrist, hand and arm ,so that didn't help, but I guess ut diesnt always happen, just sometimes,and ud rather ut take a while to get it right.

But each time you don't feel anything as its going into your breast.  I think next week will be the one where I will start to feel any soreness to the skin ,as it will be 5 days worth of radiotherapy on the trot, where as last week it was wed/ Thurs/ Friday   as I started in the middle of the week. But yes I am counting them down 12 more to go now . Your time will come round quickly  29th March, I will be nearly finished by then as my last one is on the 30th March. Xxx

Hi [@Jassoscared]‍ oh wow thanks for such a fantastically helpful post! That is full of such good info - I really appreciate it.

Love that they had to scratch your itch for you. When I had my planning session in the scanner they were saying how important it is to stay super still and it sounds like you had to do it for quite a while during the set up. Well done you!
 

Mine is my left breast so I have the added complication of having to do the deep breath hold for 20 seconds each time. This is to lift my heart out of the way of the radiation beam so it doesn't cause long term damage to the heart. They practiced it lots of times with me and it was fine but on the actual days I worry about not doing it right. Eek. The machine cuts out though apparently so should be ok. Just the thought of it though.

Great advice re the creams and how to use them. Thanks so much for that.  Hope the tiredness isn't too bad for you.

Thanks for the good wishes re the root canal - it is actually tomorrow. I'm with you on the dentist. Four biopsies and the lumpectomy were fine to deal with for me but the noise of the drills and the feeling of all that stuff going on in my mouth at the dentist. Urghhhh. I have a small mouth too and it's hard keeping it open that long!

Fingers crossed that you sail through the sessions. Take care xx

Kiwirunner 

Hi  I'm glad my last post was helpful to you. Hope all is well with you. I had my fourth Radiotherapy today, it went well and seemed quicker than usual, but I was lined up correctly first time.  I close my eyes when I'm having treatment, I was counting the beebs, as the machine was making them .I counted thirteen in all. The beebs are when the radiation is going into your body .The radiographer told me  that even though the amount of beebs may differ  on each session, the same amount is radiation will always go in to you. 

I am feeling very tired now, so will try to have an early night. Oh and another tip  ,I was told to drink a lot of water, something I'm not good at,but will try my hardest to drink more  x.

Hi [@Jassoscared]‍ so sorry only realised now you messaged me some time ago. How are you doing now? Have you finished your radiotherapy? I do hope you are doing ok. *Edit* just remembered you have 15 sessions to get through. How many do you have left?

I had my first radiotherapy session today. Took a while to get me lined up and I just went to a happy place in my mind each time I had to do the deep breath technique and hold my breath while they counted me down from 20 each time.

It was only my first session but my breast is tingling like mad and feeling hot one minute and really tender. All normal I know but amazed it has kicked in already.

Sending healing vibes xx

I am not great at drinking water either but trying hard as they said it was important.

Kiwirunner 

Hi , only just popped back on here and saw your reply. 

Sorry your breast was sore after  your first Radiotherapy session ,and I know whst you mean about drinking water, I dudnt drink more ,as I find it hard to drink water, but give me a cuppa tea ,and im ok lol.

My first Radiotherapy session was ok,had a few twinges but nothing much. I was getting pain by the fourth one. Was putting tge cream on skin so not to red or sore.

I finished the 15th one on the 30 th March ,git my certificate, ( which was a lovely surprise( and rang the bell ,I was soooo happy it had ended. As I was getting very uncomfortable, and some.  They saud it would get worse within the next 2 weeks after stopping the treatment and then  I should start to feel better. 

Thry were right ,my breast dud get  very painfull and the redness seemed to come out,but it wasn't so bad I couldn't handle it ,I feel.really tired though, but it's doable . You will be getting your certificate  and thinking, I can't believe its over, I've sine it yay ,it's such a great feeling and puts you into.a really happy place .Good luck with the rest if yoir treatments, you've got this,and I know you will get there just as i did xxxx ps let ne know how you are doing .xx

Hey there [@Jassoscared]‍ nice to hear from you and congratulations on finishing your treatment - yay!! So pleased for you. Hope you are feeling a bit less tired now.

I had my fifth and final session on Good Friday (so a week ago). I didn't get a certificate or a chance to ring the bell (even though there was one there). I think it was because the department was all closed up on the Bank Holiday with just a few patients in. One of the machines broke down earlier in the week so they had to get some of us in that day instead. But the main thing is it is finished and that's a good feeling:happy:

I don't have any fatigue yet (but it is early days) and have even managed a couple of gentle runs on the days I haven't been walking. Will be some time before I get back to my old fitness but there is no hurry. Today though I've come out in quite an itchy rash to go with the general redness. It's bearable though so if it stays like that I think I will cope OK.

Now about to start taking Anastrazole for the next five years which is a drag. Have to remind myself that it is worth it to reduce risk of recurrence.

Good luck to you and thanks so much for your helpful and supportive comments. I've really appreciated it. Take care xxx

Thanks so much to all the ladies who have posted on this subject all really helpful . I had my set up appointment on 7th got 3 tattoos....one of which has bled and is really bruised but my BC nurse says normal as a sensitive area ....Don’t start treatment TIL 3rd May ....long time considering 1st surgery was 11 February....Had to have 2nd op due to insufficient margins. I’ve also had infection so intravenous antibiotics followed by another set which left me feeling rubbish....it’s not been an easy journey . Found the breathing exercise hard at 1st but got it in the end. All my appointments have been jinxed in some way ....This time camera broke down so had technician in to fix while I was lying there in all my glory no covering !!!!

I’m feeling great now ...but due to start  Letrozole and worrying how that will make  me feel. Did read some Docs defer hormone treatment TIL after radiation so you don’t feel too bad but we’ll see. 

Would be interested to hear long term results of radiation as I’ve read can shrink and tighten breast. 

Look forward to hearing your views

Jess

Thanks so much to all the ladies who have posted on this subject all really helpful . I had my set up appointment on 7th got 3 tattoos....one of which has bled and is really bruised but my BC nurse says normal as a sensitive area ....Don’t start treatment TIL 3rd May ....long time considering 1st surgery was 11 February....Had to have 2nd op due to insufficient margins. I’ve also had infection so intravenous antibiotics followed by another set which left me feeling rubbish....it’s not been an easy journey . Found the breathing exercise hard at 1st but got it in the end. All my appointments have been jinxed in some way ....This time camera broke down so had technician in to fix while I was lying there in all my glory no covering !!!!

I’m feeling great now ...but due to start  Letrozole and worrying how that will make  me feel. Did read some Docs defer hormone treatment TIL after radiation so you don’t feel too bad but we’ll see. 

Would be interested to hear long term results of radiation as I’ve read can shrink and tighten breast. 

Look forward to hearing your views

Jess

Hi @mrsmac77 hope you are doing OK. I did relate to your comment about lying there in your glory while they were trying to fix the camera. That happened on my last day of treatment - the computer wasn't talking to the machine and I was lying there like a dead fish feeling cold and naked until I had to hop down when they realised they needed longer to fix it.

I know how you feel about taking the Letrozole as I have just started Anastrozole which is another aromatase inhibitor that does the same thing. I was so anxious about it (more than all the other bits done so far) but I took the plunge and started them on Saturday and no effects so far, although I know it is early days.  

I'm also wondering about the long term effects of radiotherapy. My breast is still sore and swollen (and quite a rash) so will have to see if it settles down and shrinks over time. I'm quite grateful to have kept my boob in the end so am trying to be accepting of what may happen.

Good luck with the start of your treatment - that time will roll around quickly. I had a about a five week gap between surgery and starting the radiotheraphy as I know they like things to heal and if you had an infection too they probably had to factor that on. Take care x

Hi Kiwirunner 

Many Thanks for your reply 

taken me time to get on here to reply.... when did it from email, system wanted me to log in, then when I did it said my email belonged to another user ...

VERY confusing....I thought I was fairly proficient with IT.

Had only 2 doses Letrozole so far and have a slightly out of body/ light headed feeling...but my BC nurse told me you need to stick with 1 for 8 weeks to give it a fair chance 

Wonder if anyone has experienced ? I’ve tried to research all these AI s as I’ve had 11 weeks to do so . Your breast sounds uncomfortable I’ve another 3 and half weeks to contemplate .....I was impressed by the Centre I attended for set up appointment Had a really lovely atmosphere and staff were lovely. 

I totally surprised myself by asking BCnurse about the fat grafting she’d mentioned earlier.....I had said I wasn’t interested but after my 2nd surgery have lost most of bottom of boob and also have a cleft under nipple .....I can imagine getting another mammogram will be difficult as my breasts are small anyway. I noticed they couldn’t find your cancer on mammogram.. I had 12 at a local centre and was actually told you don’t have cancer . THEN Doc did a quick exam followed by ultrasound....like your experience she was devastated to confirm I did have....

But I feel I’ve totally lost faith in mammograms now and I’ve been told that they cannot simply give me an ultrasound because of that experience . 

I haven’t become involved in many chats yet but I enjoy reading everyone’s post and have learned lots of practical information...Much better than any I’ve been given by most of the professionals 

Keep posting everyone....You are all such heroes xx

Jess