Corrina and Rooty
I started my rads treatment on 20 Dec and had two spells where I had a four day and three day break. (xmas and new year) When I expressed my concern about this I was told that because my cancer was so low grade it would not make any difference so I was not to worry.
Hope everyone is having a lovely weekend break from rads.
I have completed 7 out of 8 too .Some redness underneath breast today but not sore(yet ).They said Ill have appt with nurse for skin check next week .I have no treatment for four days over next weekend too .Just got radiotherapy appt for 25th May in post today ..Thats about a month after I finish so presume its just a check to make sure everythings ok .
Hope everyone is well
You're absolutely right. Just before I was diagnosed I had gynae surgery and was recovering from that, and feeling better than I had for ages. I also lost one and a half stone, so was feeling good.
Then an I was diagnosed and have had to have surgery and rads, making me feel crappy, and will soon start drugs that might mess with me too! It's bizarre to feel great, but have to be made to feel rubbish in order to save your life! I find it hard to get my head round that sometimes.
i had my 5th session of fifteen today. My boob is pink and sore, particularly my nipple, but manageable at the moment with aloe Vera and E45 intensive moisturiser. I've been really tired today. Slept most of the time on the way home from the hospital, then went to sleep again when I got home.
We're going to a wedding tomorrow and I need to wear a good bra, so think I will just put a bit of soft fabric inside, against my skin to stop any rubbing.
Hi. I'm new to the forum. Had a WLE and lymph node removal just over 3 weeks ago for a DCIS. I don't need chemo but am waiting for 15 sessions of radiotherapy. I have my planning meeting next Wednesday and think they will start soon after that. I started on Anastrozole last night which got me down a little at the thought but just got on with it. I read on the forum a couple of days ago about Replens and had got some in just in case. I'm glad I did as the dryness kicked in already and I knew exactly what to do.
My main worries about radiotherapy are that I have a frozen shoulder on that side (right). I have told them and they looked a bit appalled so I'm crossing everything we'll be able to find a position that works. I definitely cannot get into the standard position at all. The other worry I have is that my nipple is already sore, has been since my surgery off and on. It feels like there is an electric current going through it most of the time and I'm worried it will get worse with the radiotherapy. I keep telling myself things are going to get worse before they get better and that they will definitely get better. It's so odd having to continually present yourself at the hospital in the knowledge that they are going to be doing something pretty unpleasant to you again, or give you some unpleasant drugs to take away. What a weird thing this all is. I still can't get my head round it sometimes.
Thanks to to everyone who posts though. I've already found really helpful suggestions here.
Hi All had my 6th session today and went ok. yesterday and today were quicker as they didnt have to reset everything and todays appointment was on time so didnt have to wait so long. My boob is still pink but they are not overly concerned.I keep forgetting things and asked if it could be a side effect of the treatment but they said not and said it could be a side effect of the Letrozole I am taking . they suggested I make appointment to see my GP and they are going to email my oncologist about it..but rads going ok but im taking time off work as would have found it too stressful going to work and trying to get to appointments which would not help my recovery i get very tired at time and need plenty rest. take care of yourselves luv Corrina xx
Lucy, I had my surgery on 18 January and have only started rads this week. My Onchologist and surgeon said as long as it is started within 12 weeks of surgery, there's no problem.
i had to wait for swelling to go down, in the hope I wouldn't change shape after set up.
I didn't ask about hair removing! Didn't occur to me, I must be more European than I thought I was!! I did ask about deodorant and was told that as long as I used a simple roll on, not spray, and only right in my armpit, it would be ok.
Thanks for the messages of support.
yesterday was much better, only took 35 minutes and today was even quicker, although one of the girls today shouted at me to relax! Not conducive to making you relax!!! I did shout back that I was trying, and the other girl apologised!
I have quite a pink boob already, after just 4 sessions. I keep slathering on the aloe Vera gel or moisturiser, and the only bit that's sore is my nipple, and that's not too bad at the moment. I'm wearing t shirt bras, which are nice and soft.
has anybody else had mouth problems? I've got a really sore mouth and throat and not sure whether it's to do with the treatment, or whether I'm getting a bug of some kind. My taste buds seem a bit off too, everything is really bland and tasteless.
Other than that I am just very tired. Part of that's travelling over an hour each way I expect. I'm trying to drink as much water as possible in the hope that helps.
I'm glad we're at different hospitals Dawn, or I would have been panicking that it was me holding you up the other day!! 😳 I felt really bad about the people who had to wait so long because mine took ages.
Finally got treated at about 10.15 and got back home in time for lunch. Boosters are only taking 5-10 minutes to do, same as the others, now it is all set up. Appointment times are probably best regarded as aspirational at the hospital I go to, though it isn't necessarily as bad elsewhere.
The main problem seems to be machine breakdowns. There are so many patients being treated for all kinds of cancers that they are in constant use. It is not the fault of the staff as they are doing the best they can with the resources they have got. The other day I discovered that there is a brand new machine in another room which has not yet been brought into use. Don't know why, but suspect the staff are so overstretched they haven't got time to spare to train them how to use it.
JoJo - glad you are still doing OK apart from the nails. I hope the antibiotics are helping. It's weird how your nails actually get worse after chemotherapy finishes. Mine have gone dry and a bit flaky but they are hanging on and are growing normally again. I keep clipping them as short as possible to cut off the grotty bits. I also moisturise in the changing cubicle immediately after being zapped, which helps reduce the pinkness. I think rinsing the irradiated boob in cold water also helps. My travelling times to hospital are similar to yours, so I shouldn't complain - some of the people I have met in the waiting area have travelled a lot further. This morning one man said it had taken him 2 hours to get there because of the traffic. This is no joke when you then have to wait another 2 hours to be treated, then have to drive all the way home again.
Morning ladies, welcome newbies.
Number 8 yesterday, gosh it's actually going really quickly now. Boob is doing ok, the swelling from day 2 has gone down a bit now. On antibiotics for my fingernail bed infection, where my nails have come off due to chemo 😳, which may be helping with the swelling in the boob and armpit. Did a bit of gardening yesterday as it was so lovely, but definitely paying for it this morning, neck and arms are very stiff. Still at least today's appointment isn't until 6:45 so I've got time to loosen up before then.
I'm at the Royal Devon & Exeter Hospital, I feel rather lucky compared to some of you ladies as all my treatments have been in the same hospital and my traveling times are only 1/2 to 3/4 of an hour (depending on traffic) one way.
Dawn, sorry to hear about your delays with setting up for th boosters, I'm hoping mine will be ok. Some of the treatments so far have taken much longer due to extra X-rays and lining me up. The girls yesterday had such cold hands, I told them to go and hug a hot mug of something 😀.
Jayne hope the treatment is going better now.
Regarding pinkness, mine is slightly pinker than the normal boob but I moisturise straight after treatment so it doesn't seem too bad. Thought the scar around my nipple is quite sore and slightly swollen.
Hugs to all 🤗 Xxx
Morning - I start 19th April too, through to 10th May. Really feeling like the end is in sight. Bit concerned about the number of people who report machines breaking down and then inevitable delays. Have got early appointments scheduled so that I can continue to look after my grandchildren while their Mums work. Haven't factored in hours of delays - think I may need a plan B, just in case... I'm going to Canterbury everyday. A round trip of a couple of hours.
Lucy - re no hair removal! I used facial waxing strips to remove my underam hair a week prior to rads though I don't think the armpit was going to be in the line of fire anyway, but I thought it was better to do it before rather than after. Haven't needed to do it again as yet and i finished rads 10th Feb, as I'm not too hairy anyway, but it made me feel better to go in there with a smooth armpit - daft the things we care about! Good luck with rads - it's not too bad for most of us. xxx
Welcome Lucy, and hope your treatment goes well. I didn't start until just over 7 weeks after surgery (WLE and SNB). I think the guidelines are that we should start 6 - 8 weeks after surgery. You have had a bigger operation to recover from, which may be the reason for the long wait. My wait was almost certainly due to transfer to a different hospital and the availability of capacity to fit me in.
The deodorant you need is a crystalline one, such as Pitrok, which you can get from Boots - see:http://www.boots.com/pitrok-crystal-natural-deodorant-stick-100g-10086279
It is basically a lump of alum crystal rock in a plastic container. You wet it with your finger and roll or dab it on like a normal deodorant.
I am at New Cross, Wolverhampton. I am currently at the hospital waiting for treatment (8.30 appointment). The machine I am supposed to be on has broken down so the display says there is a 2 hour delay while they fix it, and another one is undergoing maintenance It probably going to be a long morning...😭
I am at UCH in London .You may be allowed to use a metal free deodorant (check with the radiographers)I am 5 down 10 to go .No bad side effects so far.Only had a long wait one day.Going shopping in the West End after the session today !!
i had my first planning meeting yesterday and start rads on 19th April. I will be 8 weeks post surgery after mastectomy and DIEP reconstruction.
It's really interesting hearing all your experiences.
my worries so far are - no deodorant or hair removal, it's bound to be really warm for April! And also waiting times if the hospital is running late. I have getting on for an hours travel each way.
Which hospital are you all attending?
Corinna - it's fine to cool the irradiated boob and surrounding area with cold water. I asked the radiographers about this, and they said it wouldn't do any harm. So I have been rinsing with cold water in the shower every morning and splashing with cold water over the washbasin every evening before applying moisturiser.
At the risk of temping fate I have been OK so far, apart from a slightly sore, itchy nipple. I am dealing with this by plastering on as much aqueous cream as possible, and wearing a crop top with a strategically placed cotton wool make up pad inside, to stop my clothes from chafing.
Today's treatment (booster 2/8) was a lot better than yesterday's. Although it was about three quarters of an hour late, the treatment itself went without a hitch and didn't take long because they have now got the programming sorted out. I took an Ibuprofen before, which may have helped although as I wasn't on the machine for very long it wasn't as uncomfortable anyway.
Hope tomorrow's treatments go well for everyone else. I've got an earlier start tomorrow because they are servicing the machine so the only way I can be fitted in is with an early appointment.
At the hospital now. All the machines are running at least an hour late today. I hope I am not on LA2 which is running 2 hours and 45 minutes late.
Yesterday they were running an hour and a half late when they tried to treat me the first time. My appointment was at 12.30, but I didn't get called in until after 2 pm. After having to come back, I finally got treated just after 4 pm. Allowing travel time, the whole process took about 4 and a half hours.
Jayne - sorry your second one was such an ordeal after the first one went OK. I hope it is better today. I sometimes find my arms ache as well, but they have not yet resorted to splints. They do use felt tip pens.
Corrina - when I started they also took reference images the first three days, then once a week. The 15 whole breast ones didn't take long, even with the images it was only 10 minutes.
I had the first booster yesterday. Things did not go well. They had two goes before deciding that the square frame thing was too close to my chest. They were going to send me home without being treated until I pointed out that if they did that they wouldn't be able to finish my treatment before Easter.
So instead I was told to go away while they re-programmed the machine and come back later. Fortunately it was OK after they had done this, so I was able to be treated. They must have taken an image first, this being the first booster, so by the time they finished my arms were aching and I was struggling to keep still. The radiographer suggested taking a couple of Paracetamol before the next one, so I will try that and let you know if it helps.
Hopefully today's will not be so much of an ordeal.
Day 2 of 15
Well, that was horrendous!
It took four attempts to set up today, with arms in splints and laying on the bed for an hour and a quarter. While they marked me up, washed it off and repeated!
Apparently something has changed between initial scan set up and treatment, and because of the position of my heart they are having to be extra careful. They hope they'll find it easier as treatments go on, but can't promise anything.
Achey all over and fed up. I know it has to be done, but the thought travelling over an hour each way, plus over an hour each day for tratement time is a bit daunting to be honest. 😞
Hope all all of your days have been better than mine. X
4 down ..11 to go .Today they didnt have to do a scan first so it was a bit quicker. That was a relief as I hate lying there waiting for the treatment to start!.They said they will scan every week now. I am a bit more used to the routine now and feel ok today.My shoulder was a bit stiff at the weekend but its ok today..Hope everyone else is ok too !
Not it feeling too bad today, and slept well last night.
no.2 of 15 later today.
typically, I have been bitten in the night, on my left arm and it itches like you wouldn't believe! Going to have to slather it with something this afternoon, so it doesn't itch while I have to keep still! 🙄
How annoying is that?!! Lol!
I also have to take my glasses off, otherwise I have the overwhelming urge to push them up my nose! Does anybody else get strong urges to move when they know they have to keep still?!
Thanks JoJo, glad you seem to be doing OK so far despite the evening appointments, which must be very tiring. It's a relief to have the weekend off, isn't it?
Glad your first one wasn't as bad as you feared Jayne. It is always daunting before you start a new treatment. I don't have to do the breathing exercises, but if I did I would probably have felt the same as you before starting. Now you know what to expect, the rest should be easier to deal with.
Keep doing the exercises, Corinna, even though it's sometimes hard to motivate yourself. It can also be difficult to fit them in when you are spending a long time getting to and from the hospital and waiting around atbthe hospital when they are running late. I am still doing them 4 times a day as instructed by the oncologist, and I think I would struggle to hold my position on the machine if I hadn't.
They are mostly giving me late morning, lunchtime or early afternoon appointments. I find the hanging around waiting when they are running late and the travelling to and from the hospital are as tiring as the radiotherapy itself.
I had number 15 today, the last of the whole breast ones (no bell ringing yet). Today they were running an hour and a half late, so I was late for my Herceptin injection. Fortunately, I had already warned the chemotherapy unit at the other hospital this might happen, and they were OK about it.
I'll be having the first of the 8 boosters tomorrow. I have got Intrasite (Hydragel) and Instillagel on standby in case of skin breakdown or burns. I keep drinking plenty of water and plastering on the aqueous cream, and hoping for the best.
Hope everyone else having radiotherapy at the moment is coping well and avoiding skin problems. It is an ordeal, and I certainly can't say I enjoy it, but we will get there in the end.
6 down 14 to go 😀
Not sure about these evening appointments though, felt totally exhausted by the time I got to the hospital. Seem to have woken up a bit again though, just in time for bed 😳.
had my my first session today, and it was not nearly as bad as I had imagined!
i think they had given me the wrong idea about how long it would take, and that I would have to do it over and over again! When I told the radiographer I had today that that was what I had been so panicked about, she said "good gracious no! That would be unbelievably exhausting!". When I told her that was the impression I'd got from earlier conversations she was a little concerned and said she would pass on the issue of miscommunication!
So, I'm much more relaxed than I was! Bit headachey, so drinking lots of water. And my chest feels a bit tight, but that's all at the moment. 👍🏻
Thanks for for the message and sorry to hear that you're going through the mill a bit! Makes me feel like a proper baby for complaining!
Hi ladies, hope you all had a good weekend.
Jayne, I have to do the breath hold as having the treatment to chest wall. It's not too bad as they count down from 20 each time and usually get to 5 before they say "breathe normally". I have a little block on my chest which measures the breath and if this moves , if I accidentally breath out to early, the machine will cut off so no chance of the radiotherapy getting where it shouldn't.
I'm into week 2 now but appointments this week are evenings, and only 4 as Friday is a rest day.
5 down, 15 to go 😀. It was nice to have the weekend off. Must remember to do exercises more than once a day though as feeling very stiff today.
As for boob colour, just very slightly pinker than the other.
My only bugbear at the moment is that my chemo is the gift that keeps on giving and I'm now losing nails and have an infection on one of the nail beds 😢. GP has prescribed me some antibiotics to help.
Hugs to to all of you starting this week. It's not too bad. We can do this 💪🏻 Xx
I actually felt the process very positive because I was doing something about it.
It's more like 10 mins and 5 of that is getting you in the right position. The first one is a little daunting, but you will soon get in a rhythm. Drink plenty of water (2litres a day) and you may feel a little sleepy afterwards.
Best wishes x
if if it wasn't for the anxiety about the breath hold, I would be looking forward to getting it over and done with. I'm sure it will be fine, and I will discuss my fears with them this afternoon. I'm hoping the anticipation is much worse than the reality.
The prospect is always worse than the reality. It should be fine tomorrow. I didn't have to do the breath holding, but your team deal with this all the time & will support you. Do let them know if you feel you need to discuss anything further. Most of us have found the rads experience quite straightforward & oddly, some of us quite enjoyed it as you get to know the team & others having appointments at the same time.
It will soon be done & dusted.
i start my rads tomorrow. First of fifteen sessions. I am bricking it now! It hasn't been straightforward.
My WLE was on 18 January, and Ilthough the surgery healed well, my armpit has been a nightmare. I have had lots of pain, and had to have antivirals because the doctor thinks the shingles that I had last year, in my armpit and down my arm, has flared up again because of the surgery and disturbance to the nerve.
Also, my tumour was left side, so my heart is in the way and I got called back for a second planning session, where I had to learn the breathing technique to keep my heat out of the way. It involves holding my breath for 15 seconds at a time, so they can do the rads in short bursts. Doesn't sound too bad, but when you're anxious and uncomfortable, and know you mustn't take a breath, it's not easy to maintain.
Really not looking forward to three weeks of that, but got to be done, so I have to get on with it. Other people don't get it, because people they think I just have to go and lie down for 15 mins, then walk away! Feels very lonely at the moment. So, if anybody has done this, and can offer any advice, before I leave tomorrow afternoon for the first one, I'd really appreciate it.
I also should have have asked what happens if I can't hold my breath and let go! How serious is that? It's playing on my mind and I'm scared I'll be rubbish at it. Just at the moment I feel a bit sorry for myself and wonder why mine couldn't just be straightforward.
Is it the pitrock stick. That is what I used, it took a bit of getting used to but was very effective I thought.
So right about making sure that you keep up your fluid intake and get plenty of rest., you do not realise how much the actual going to/from the hospital actually takes it out of you on top of the treatment.itself
I still get fatigue times now, I will suddenly feel extremely tired and will fall asleep for about 10 mins, then I wake up and I am fine again, it is really strange.
The exercises are so important and will really help with your movement ability,
Have a good nights rest xxxx
Hi All I felt very tired yesterday after my treatment bbut today was feeling much better till this afternoon when I got really tired again and had to have a nap. My boob is fine and Im sure it is better for having a day off from treatment as dont get it on wkends. I continuing to drink loads of water ,and forcing myself to do the exercises I was given by the physio after having my axillary node clearance as I know its rally important. how is everyone else?? hopefully you are ok Luv to all from Corrina xx
I am a bit pink around the WLE scar and was very tired yesterday too .I was given aqueous cream ant told I can use Aloe Vera too. They said no deodorant even at the weekend ..I have bought a Bionson deodorant which is aluminium free but couldnt remember the name .I am going to take it in on Monday to see if its ok to use.Hope so ! Enjoy the weekend off.
Thank you to everyone for you kind comments and wise words. I'm now looking forward to getting through this. Roll on 10th April.
Im looking forward to ringing that bell! 😊
Hi All thanks to the people who responded to my last post .was very reasurring. had my second rads session today. thing are going ok so far. just a bit tired this afternoon and benefitted from having a nap.Im drinking loads of water to keep hydrated and was given some cream to put on my boob. Also got told it would be fine to try Aleo Vera or different cream but if I had a bad reaction just stop using it. my boob is a bit pink but nothing alarming so far.hoping everyone else is getting on ok?
Hugs fro Corrina xx
That is totally normal and I am sure a lot of us felt the same at that point, as at the start of anything we have been through, it is fear of the unknown, once you get the first one under your belt you will be fine because you will know exactly what is going to happen each day.
I was told I could use both Aloe Vera although it has to be at least 99.9% and also E45, however about halfway through my rads team asked me just to use the E45 cream as my skin was breaking down a bit, dont know whether this was because my skin was too moist, but I did what they advised. I had no problems other than the skin being rather red and my nip being incredibly itchy, the rads skin nurse gave me some polymem pads which I put between my skin and bra, it just acted as a barrier to stop the bra rubbing the area and I would not wear my bra when I was at home
like DJD I've got my prep session on 10th April. Then rads start on 19 Apr till early May too. I'm coming to terms with the rads. My WLE and SNB went well and everything is good. So, I'm not sure why I'm worried. But I am. I'm still going through with it. And am determined to put a brace face on it.
One question though. Is Alloe Vera better than E45. Or can I use both? I do really like Allie Vera.
I started radio today too ! It was originally supposed to start today but was then postponed until Monday because of a machine breakdown .I then had a call this morning to I could still start today if I wanted.I wanted to get the first one over and done with !.It was all very quick and easy but Im looking forward to not having to go over the weekend !Hope it all went well for you !
Hi Corina, As Ann says Radiotheraphy is a great defence against reacurrance and Is really pretty straight forward, I actually looked forward to going and missed the whole team and the people I had met when I finished, I used Aqueous cream and aloe Vera and was never told to only use one specific thing, I got a little pink and warm but nothing major and flew out to Menorca 3 weeks after I finished and had no issues with sunbathing! Try not to get wrapped up with possible side affects as most of them are rare, I've had no lasting lung issues just a bit of a dry cough after finishing but that soon settled, two years on I would never know I had anything done! All the best Xx Jo