Dear JCJ ,
Probably got your name wrong let me know if I have. I had a lumpectomy off my left breast and some removed from ny right breast in November 2012 plus they removed some lymph nodes as well. I am on week 2 after having a 15 week radiotherapy session. I read your message and am glad to know it does get better. The emotional rollercoaster I am on is terrible. I stopped councelling before my radiotherapy but need it now. I am 47 married with two teenage children. Nobody seems to understand how I feel my hubby included we are all finding it tough. Just want to be me again and want to be free of cancer. Sue.
Hi Bethany300808, hope you and JCJ don’t mind me coming in here? Just you sound really in a bad place just now. Sounds like you have had a tough time too? Certainly a lot of radiotherapy , how is it going? Why don’t you call the Breast care nurses on this site on the helpline? . Talking to others does help and what you are feeling is normal. I agree no one really understands how you feel. Some do not know what to say. I had a lot of sympathy and get well cards , etc ,when i first told people, but not heard from many since to see how I am coping even with the rad treatment! . I found this site useful as it seems a lot of us experience similar problems . My husband has been great but again I have to remind him I am not superwoman and he cannot expect everything to run smoothly in houses, etc! I keep forgetting things and get distracted easily. It is a big emotional roller coaster ride and you need to find some release that suits you. I still have a little cry at times but also keep thinking I am getting treatment and so far so good. One step at a time. find out as much as you can, as it helps you gain some control of the situation. it is a awful disease and mentally as physically it takes its toll. Try to be positive , easier said than done I know. Take care, Katykookabura.
Hi everyone, just thought I’d let you know that the hospital I was at let me take a gown home while having the radio so I always had one, and that way most of the time they only got to see what they needed, it might be worth asking.
As for the tiredness, really feeling it at the minute, thought I was going to go back to work full time this week but by 2pm I’m just staring at the PC trying to figure out what I’m doing lol hoping it improves quickly
Take care everyone
Moonbeam
Hi Moonbeam, useful suggestion regarding gowns. I actually invested no pun intended, in some pretty vests with soft bra supports in them as Chascat suggested. Much easier than stood there fiddling with a bra and keeps you covered until you get on the table then you can slide it up before you get off. Tonight I was glad of it as it was freezing in the treatment room so much so I was shivering and told the radiographer as I was worried I was moving!! My poor breast looks like a battle map with crosses and dots all over it besides two scars!! .
How many treatments have you had ? I feel ok at the moment but been warned to take it easy it we will catch up,with me. Must be hard having to go to work as well. Are they sympathetic about it with you?. Take care, Katykookabura .
Hi Katykookabura, i’ve actually finished now, I had 25 with some sort of wax thing on the scar 3 times a week, I did carry on working throughout the radio however I gave myself two weeks off work after to try and recover from everything, still felt tired at the end of the two weeks however due to people losing jobs at work I thought I’d better be seen. They have been great though and whilst I thought I was going back full time (after 9 months of bits here and there) they had already decided that I would start back doing just 5 hours a day for the first two weeks and then 6 hours a day for the 2 weeks after that, then maybe full time. However I’ve ony just got to the end of week one and am very glad they gave me reduced hours.
Think the tiredness hit me the most about a week after treatment finished so if you are at work at this point you may want to do less hours, it’s now 3 weeks after finishing radio and I’m still tired, I can feel fine but then it’ll feel like somebody has pulled the power plug and I have no back up battery. So yes it will catch up with you however it doesn’t affect everyone the same way, just take it easy and give your body time to recover.
My chest did look rather interesting by the end of treatment, but after three weeks it’s looking pretty good all things considered
Hope the rest of your treatments are in a warmer room!
Moonbeam
Thanks Moonbeam this has given me some idea what to expect, though I appreciate everyone is affected differently. Sounds like you have good employers. I am technically retired but now run small business and I am a local councillor up for election on May 2nd!!! However my husband is doing a lot re business which helps even though he has another job and my mates on the council are helping doing alot although I have been out delivering newsletters this week and have some canvassing to do tomorrow.
I have cancelled everything else and will not be doing much next week . One of the radiographers told me very sternly last week I had to slow down! The weird thing with having breast cancer is I have felt OK most of the time as it is the procedures that make you feel poorly. When I looked at what they had done after surgery it really hit me I had cancer . That happened again last week when I had first rad treatment as i had recovered from two ops and felt fine except for odd pain twinge. So this last week has been psychologically tough again and whilst I am getting used to rad treatment my head is all over the place again. Keeping busy does help. Ironically people I know are just finding out (I knew just before Christmas) and they can’t believe it as I look so well they say! Hey oh onwards and upwards ! Katykookabura
Hi Ladies,
I am interested in your experience and comments on this thread as am due to start rads soon following a WLE and SNB on 28 Feb. I have an appt with the Onc on Wednesday 10 April which I guess will be just a chat about the procedure, mitigation of potential SEs and how many sessions I will be having which my BC has already said is likely to be 15.
I still cant believe I have (had hopefully) cancer and everything’s all happened so quickly since my diagnosis a few weeks ago. I’ve coped well with the surgery, am now on Tamoxifen - 11 days in and waiting for the hot flushes and pains to kick in! - and thought the rads bit would be ok, simply the next stage to get through. But now my appointment is getting closer, I’m starting to feel anxious.
Like you said Katy, people who are just finding out that I am being treated for BC cannot believe it as they say I look so well and am just getting on with life as normally as I can.
But every now and again, especially when a procedure or result is imminent I start to wobble…
Hugs to all
Julie xx
Hi Lady Julie,You’ll find the rads are the easy bit after everything else we have gone through, they don’t take long (10 mins max) and you won’t feel a thing, so try not to worry to much, it’s amazing how quick those few weeks go once you get started. I had 25 and went red, oh and itchy - that was the worst side effect I got though. Think it was about a week after finishing that my skin started peeling, that’s stopped now, not sure if people normally get that on a shorter course? I know if you have 15 the dose is probably a bit higher but if it does happen don’t worry just keep putting the cream on, my skin looks much better now, still a bit of a funny colour though
Your quite in titled to the odd wobble don’t think many of us have none, it’s very normal I’ve been on the Tamoxifen for over 2 months now and not had any hot flushes that I’ve noticed (although I do get a bit warm sometimes but normally put that down to the room temp though) so you may be lucky and not get any!
As for looking well, I got people all through chemo telling me how well I looked! I suppose it’s better than looking ill but I always felt like saying …but I feel like #%^* always resisted somehow lol
Hope your treatment goes smoothly for you
Moonbeam
Hi Moonbeam, Thanks for your lovely response and reassurance, including the bit on Tamoxifen. Sounds like you’ve had a lot of treatment one way and another - I hope it’s all going well for you.
Your ‘expletive’ really made me laugh. I know exactly how you feel.
Julie
I start 15 rads on Mon.29th April. Had right m/x end of November, my last TCH chemo yesterday. The lymph node area above the collar bone will be treated and the scar area. I don’t know whether the underarm area is blasted also? Has anyone else had similar treatment to me prior to rads? Apparently one S/E of collar bone treatment is a cough - am a bit concerned about chest wall, lung effects.
Jenx
Hi Lady Julie welcome to the site. Moonbeam , I have to say I actually had a bit of a rough time tonight whilst having rad treatment. I actually had a sharp pain sensation as they gave me my treatment. They put these wire connectors on my breast ( 4 ) and when they switched on the machine on I could feel it and it was not pleasant. It only lasted a minute to two but made me screw my face up! I have fibromyalgia and I reckon that is why I can feel it. I shall phone nurses and ask them as it was a bit of a shock!!! More ways than one. I am OK now and at least have week end off to recover.
Lady Julie, I had same surgery and also having 15 rad treatments. Just had number 6 tonight . As Moonbeam says it is amazing how quickly things go by. I was diagnosed Wednesday before Christmas and can’ t believe how the time has gone by and the quickness of the treatment plan I have received. But those waiting bits in between are hard. Once you know where you are and what is happening it gets easier but with those wobble moments hitting every so often. I am on anastrozole and seems daunting that has to be for five years! However I am reassured that I shall be checked as necessary . As someone else said somewhere on this site it is like a chronic illness and life goes on around it.
Had two more comments today how well I look and as Moonbeam says you cuss under your breath but somehow keep smiling!! Best wishes and take care everyone. Katy.
Hi Jenanne
I also had radio to the collar bone area, masectomy and chemo, I finished radio just over three weeks ago now and have not had any problems with either a cough or a sore throat (don’t know how soon a cough would show up), I would advise turning your head well away - I believe this is what helped me but I’m not planning another go to find out what happens if I don’t turn my head as much… I must admit I fully expected to get a nice sore throat but… Nothing I didn’t have any radio to the underarm area as all the nodes had been removed. Oh and on a slight side note as your having your collar bone area done put the cream on the top half of your back as well, all the way to the middle, after a few days you’ll start to see the area you need to put cream on but I was missing it slightly a first - this is where the radio leaves the body For the collar bone area. The radio to the chest does not go through the body.
Hi Katy, sorry to hear you had rough ‘treat’ if it helps they only put those nodes on me the once so hopefully you won’t need to go through that again, but I would mention it to them on Monday.
Hope everyone has a good weekend, I’m planning some shopping therapy
Moonbeam
Thankyou Moonbeam1 for the info - very useful!
Jen x
Hi Moonbeam and everyone. Well, had my rad review last night and it was useful. Good explanation of what rads I am getting and the diamodes( proper name for those wires they have been putting on my breast during treatment). Seems they do measure strength of dose. Seems I have two beams at a higher strength ,one at a lower dose. Clever stuff! Told the radiographer that I could feel the beam last Friday as it hurt through one of the diamodes. She said she could not disagree that rad treatment sometimes might be felt and felt my fibromyalgia was probably the reason.
Anyway, when I went through after the review for treatment they said I had to have one of the diamodes on again but would take it off when they had tested the dose rather than leave it on for the whole treatment. Sure enough, only on for a couple of minutes then they removed it and then finished the treatment, which was so much better.
Was tearful though there last night and don’t really know why. I had another reflexology session earlier in the day which picked up my"ailments" , so maybe that caused it or maybe it was after having a break at the weekend being back at the oncology unit reinforced I have cancer?. Anyway hopefully today it will be better. Has anyone else got low or tearful during rad treatment?.
Started to get tender in breast but skin still OK so now unchanged to soft bra ( sports type) and using the vest tops . Aqueous cream twice a day although the radiographer said that research has shown that if your skin is going to break down it will wether you use cream or not. Hope you all are bearing up ( no pun intended!) .Katy.
Hi Katykookabura, I finished rads (15) last Friday and found that I did feel low and tearful during the last week-could have been getting up at “stupid o’clock” or the travelling which got to me as well. I washed with “simple soap” and just used copious amounts of aqueous cream 2 or 3 times a day letting the air get to my boobs as much as possible. At my last session the radiologist said my skin looked amazing and to just carry on whatever it was I’d been doing. So far I’m just looking a little sun kissed and a bit itchy - the radiologist suggested 1 piriton tablet during the day would help and boob is a bit tender, hoping things stay the same but I’m led to believe they may get wose in the next week or so. Good luck with your rads. Pat.
Hi Trisha, thanks for tips. Feel OK today but was wide awake at 4am but went back about 7 and slept for another two hours!. Been tired today but that is from poor sleep. Anyway 8 down 7 to go! Not bad this pm and had a bit if a giggle with the ’ regulars’. Same men and women there each night and we are all becoming ‘pals’ , sharing notes with each other about how we are all tolerating or not the dreaded ‘treatment’. Useful to know that tears are common. Sounds like you did well regarding your skin. More or less doing same routine but using very little soap ( Dove) as could not find baby soap anywhere. Will get some simple soap also if you recommend it . Take care, Katy.
Hi Moonbeam, Jen and Pat. 12 done 3 to go and feel absolutely whacked all of a sudden . Was reasonably fine until yesterday then waves of feeling weak and drained . To-day it’s worse and realise probably overdone things as I was feeling reasonably physically well. The whole experience might be the reason though as being reminded everday you have had cancer and some of the cells might still be there and are getting blasted is quite sobering!.
Anyway staying positive and on right side of finishing treatment now and can’t wait for normal days without the journey to the oncology unit. However, the care has been very good and staff ( so many different radiographers) are very clever and skilled in what they do.
My skin is doing well on the aqueous cream being applied twice daily. Taking vit c tab plus multivitamin/ mineral and eating lots of fresh veg and fruit so keeping fingers crossed it stays that way. Hope you all doing well . Katy.
Hi all, just letting you know had my last of fifteen treatments on Wednesday. Relieved it is all done with now and for me it is just Anastrozole for next five years ! The rad treatment was OK once you get into the ‘swing’ of it . The review was helpful to talk things through and ask questions. My second review which should have been on Monday last, was cancelled due to,“staffing issues” the receptionist said. When I asked if I was going to have one fitted in before I finished , i was asked if I had any problems!! .
As I did not, I told them it would be OK not to have it, as I could tell they were very busy. Lukily I have had little skin problems it has just started today being a bit itchy but other than that the skin is good. Will just keep up with my regime no soap, aqueous twice a day and putting Germolene lightly on sore spots and a very small area under my breast and that seems to work! .
I started to feel,whacked last Thursday and it comes over me in waves If am finding if I pace myself it gets better. I was told the last rad keeps working for two weeks and that I may feel unwell for 4-6 weeks. Trouble is I am looking well and I don’t think,people have any idea how rough I am feeling at times. Being positive though, as another stage of the treatment path completed. Been advised to get some 50 factor sun cream as even in a V neck,T shirt might get problems from being outside in sun.
Hope you all doing well,also. Katy.
Well 15 of 15 rads over and done with yesterday. Handed in my ‘Modesty Vest’ and was given a tube of Flamazine for my very red and burning right booby told to keep taking codeine and paracetemol for the pain and would get another appointment with Onc in 4 weeks time Thank you & goodbye. I thought they would have had a bit more of a chat with me but no I am finished.
15days treatment, 1550mile total travelling and 5yrs of letrozole to come. I suppose I should feel lucky really but I dont I just feel very very down.
Sorry rant over
Ann W
Hello again Ann replied earlier to your other post and have now seen this one. Sending you a big cyber hug and thinking of you. I am still in the thick of it but think we spend so much mental & physical energy just getting through each stage of treatment that coming to the end must be quite a strange and vulnerable place. Look after yourself and keep in touch with everyone on here. It really helps to read a friendly post and know that others are rooting for you. we all do our best to get on with life and be positive but sometimes that can feel a lot more difficult. Take care of you. X