Radiotherapy side effects - am I a total wimp?

[Katykookabura]

Hi Weepixie, glad you have " turned a corner" at long last. At least by posting your experince and the name of the dressings it will help other ladies who are experiencing same problem.
I am doing well too. Can't believe where this year has gone and how quickly despite everything. It was December 19 th I was told about my cancer and it has been a whirlwind year. It was a year ago the routine mammogram picked my ' alien' up and I just want to get my first check mammogram done which will be early January thn I can be sure they got it all out .
The emotional stuff still comes sometimes but not as bad as it used to so it is a case of time being the best healer in that respect.
One thing for certain I am making up for having a crap Christmas and birthday last year( 22nd is BD) and it spoilt the whole family's Christmas so we are all looking forward to having a good one this year!
I am thankful though as I have said on my postings before that my cancer had not spread and that the care and attention I got throughout was excellent. It was traumatic especially as I was just getting over my second knee replacement in a March 2012 having had one the year before in 2011 . I have found this website my main support as the breast care nurses ' drop you off' quite quickly due to the volume of cases they have to deal with. My hubby has been great but it has taken a toll on his health too!. I certainly have learnt who my real friends are and it just gives a different perspective on life.
Hope you continue to make good progress and get fitter. Watch out and keep away from anyone with infections ( as best you can). I have a strict ' wash you hands ' policy with all my family when they come here. I am not obsessional just trying to reduce the rusk of getting anything as immune system has taken a hammering! Keep in touch and let me know how you get on. Best wishes, Katy.

[Guest user]

I am ecstatic! After changing to the Polymem dressings just over a week ago the burns are disappearing almost before my eyes and more new pink (not red) skin is starting to appear almost daily. The new sores which kept openng up around the margins of the dressings have dried up and peeled now revealing lovely new skin too and it is altogether much more comfortable. Even the dressings are nicer to wear, much less bulky so I can wear proper bras and almost forget they are there. I just wish I could have tried these dressings sooner, it could have saved weeks and weeks of suffering.

Seeing my onc tomorrow and in a way I'm quite disappointed he will not have seen the burns I had as I think he might have been better informed when discussing rads with other ladies if he had.

What about you, Katy?

[Katykookabura]

How are you doing now Weepixie? Katy

[Guest user]

I'm glad you are feeling a bit better Katy.

12 weeks on from last rads now. nurse recommended changing to PolyMem dressing so we will see how that goes after a few days. the dressings are less bulky so at least I look a bit less lopsided! Still have a lot of heat at times and some sharp pain in the breast. Just wish I knew what was going on inside as I can't help freaking out when it hurts.

I'm quite annoyed at myself for letting this get to me as I can normally take it all in my stride. Feeling really yuck right now.

I don't want to worry anyone about to start rads. They tell me this is an extremely rare reaction and most people are back to normal in 6 weeks.

[Katykookabura]

Hi Nerakq, sorry to hear you also on the "journey" . You are right when you say you have found this website helpful. I found out many good tips on here that has helped me. I had two lots of surgery too and I hope you get clear margins this time. It is all the waiting to find out how things are that is so stressful.
Let us know how you get on. I am coming upto a year in November when I had the routine mammogram so feeling a bit nervous again. Silly I know as I feel lucky as had a primary and no spread , then rads and now Anastrozole. I have my first annual check early January and just want that to come round so I can have peace of mind and move on. Take care of yourself as I have warned others no one warns you that your immune system gets low . My GP has been brilliant and has kept a close watch on me. In all my infections and then a tummy bug I was told that to improve your immune system use a prebiotic . I started taking a prebiotic yoghurt drink every morning and I think it helps. Told to take it for at least six weeks but I am going to carry on as do not want anymore bugs!. Let us know how you get on , take care, Katy.

[Katykookabura]

Hi Wee pixie, sorry you are so fed up but I was like that. I have only just started feeling more like myself except for the tiredness thing in the last five weeks. I had reaction to rad treatment , then an infection in my chest and sinuses and had to have three weeks of antibiotics, just got over that had a tummy bug which lasted a week then just as that finished I got a UTI and back on antibiotics for another week.
We went to Cornwall for a few days as could not travel outside the UK too risky I thought. I think that helped me getting away from everything.
This cancer journey dominates your life and it is finding the best way to manage it .
You are having a really bad time but it will pass I am sure though it may feel like it never seems to stop. I know how depressed it can make you as I was feeling very low but it was a reaction to everything. Trouble is in the initial stages when you find out the treatment, surgery and rad treatment
, etc, happens so fast that I think it had a delayed reaction to it all.
The immune system is definitely at its lowest trying to cope with it all but no one warns you about this.
You were sensible to have flu jab I have not as yet as it made me I'll last time I had it so not sure I should have it.
Have you got a Chillow pillow?. £25 from Amazon and it has been great as keeps me cool. Don't need it quite so much now but you can lie on it and it might cool you down. Especially at the side of your breast under your arm as it might be too sore for you to lie on it. I use it with a cotton pillow case and put it on top of my pillow.
Phone the nurses on here for support as a chat with someone might be good.
What is important is trying to keep on top of it all and whilst that is easy to say sometimes we all need someone to talk to.
I just feel wacked all the time and I am now finding the Anastrozole is making my joint more painful than before. Bl--dy horrible disease !. Take care let me know how you are. Katy

[nerakq]

Hi all, I am just recovering from second surgery, hoping that all margins are clear this time so that I can schedule my Radiotherapy to start. Thought it would be a good idea to read some threads to see what I am in for.......expect the worst amend hope for the best. I am finding it very useful especially the personal experience of which creams or oils to use, bras and pad inserts, what to wear at treatments. Pillows, all the side effects are freaking me out slightly but as I think fore warned is fore armed and if I am unfortunate to experience any of them I will feel informed by all the comments and suggestions on this forum? good luck and best wishes to all x x

[Guest user]

Sorry you are still suffering too Katy.

I do take a multivitamin daily. Had flu jab this week. I  wear a soft seamless bra to help keep dressings in place.

I have called the radiotherapy team again at the request of my GP practice nurse who says they are very concerned that the  area of soreness seems to be spreading. I still have a lot of heat. She thinks my skin may now be reacting to the adhesive in the dressings. Anyone else had that happen? I'm awaiting a call back from a nurse at the radiotherapy unit and hopefully they will agree to see me again for some advice.

I am just totally fed up. Sick and tired of being sick and tired.

I've had an awful week with  other health issues and just not coping very well with everything else on top of this.

[Katykookabura]

Hi Weepixie, sorry to hear you still struggling and suffering .mi have not been on the site for a couple of weeks so was surprised to see your post.
You must be fed up . Do you take a Vit supplement?. Why I ask I did and I think it helps. Try and keep strong you will get better. I think you have to try everything that is suggested otherwise you might have regrets.
My breast is still sore inside and still feels slightly warmer than the other one. Do you wear a bra as might be idea to stop wearing one if you are?. Take care let me know how you get on . Katy.

[Joolz2000]

I have a brilliant GP Practice Nurse who has been treating my radiotherapy burn with urgutol which is a burns dressing. I had bad skin burns under my breast. The urgutol is working better than the gel the radiographer gave me. It is held in place by an adhesive absorbent dressing.

[Guest user]

Another update - 10 weeks on from last rads and still dressing wounds on a large area across the front of the breast every day with Mepilex dressings and hydrogel. There is slow improvement with some new skin now showing but other areas seem to be breaking down again which is very frustrating just when I thought it was all going to finally heal. It just seems to be taking so long and hurting so much.

Breast care nurse didn't have any advice other than to call radiotherapy team. They said to carry on as we are doing I asked about aloe vera and it's not recommended. I saw my oncologist last week and he says to give it another 2 weeks then go back if not completely healed as he feels it is taking too long. I feel that too. No idea what else they can do. News from the CT scan is that there is no change from the previous (pre-rads) scan, no improvement. Hard to say then whether it has all been worth it.

[Guest user]

I have used the Aloe Vera gel.  Brilliant and so cooling to the skin   I only had the 5 treatments   so skin discoloured

but not burnt

[Katykookabura]

Hi Weepixie, sounds like you have had a rough time but hopefully now turning a corner. I had trouble finding a chemist that stocked the plasters as well.
Be careful as what no one tells you is your immune system is working overtime at the moment replacing all the cells in your breast. Keep way from anyone with an infection as you might catch it. I had sinus infection and took three weeks of antibiotics to get on top of it. My GP who is brilliant told me the same and to be careful. Also ask about flu vaccine as might be necessary this winter.
My breast is still quite painful at times and there is a difference in the temperature of it compared to the other so it must all be working overtime in there!
Hope all goes well now for you. I can' t believe where time has gone as it was early November 2012 I had my mammogram which found the cancer. Have check mammogram early January which is another milestone to get through. Take care, Katy.

[Guest user]

Hello i can state you are not a wimp, unfortunately there are no magic creams out there that will help with the erythem (burning of the skin) Your gpcan prescribe a hydro gel and mepilex lite which i have found very useful for my patients.  Larger breasted ladies do get a worst run of it with radiotherap, but im saddened to hear that your radiographers didnt assist you properly.  None of our patients are sent away without the right dressings and creams to help heal the skin and they are reviewed byspecialist radiographers weekly.  What an awful experience for you, i do hope that other peopl donthave to suffer in this way.  Although the nature of all the cut backs mean larger time pressures and cut corners.

[Guest user]

Thought I'd update again- 6  weeks on now from last rads and I think we have finally turned a corner. Breast is still sore and hot and I'm still having to do dressings every day, seeing the practice nurse twice a week but now I feel I am at last finding some improvement. New skin is appearing from under the burnt bits. I've had a fair bit of skin peeling under the breast but the splits have healed nicely, it's just the one larger area over and around the nipple that's still quite raw and sore . Hopefully the next few weeks will see it all healed up and feeling more 'normal' whatever that is. It's been a long hard slog not helped by GP and chemist conspiring to make getting hold of the dressings a full time and very frustrating job. Thanks to all for the messages of support. I'm now waiting for CT scan appointment then a review with my onc and we will see if it has all been worth it.

[Katykookabura]

Hi Weepixie, the name of the plasters is Mepilex Boarder Lite made by Molnlycke Health Care AB a Swedish company. I had 4cmx 5cm size. I think they might be expensive but I was given 10 on prescription. Hope this helps as they really soothed the burn area down and it healed uunderneath. I only changed them after they got wrinkled or after a shower.
You must be relieved that you are at the end of the rad treatment. Not having to make that daily trip ireally makes a difference so much so I actually felt strange not going out on the 20 mile round trip in mainly heavy traffic!. You can move on now, best wishes Katy.

[Guest user]

I'm told you just have to suffer until treatment ends as they won't allow anything other than the hydrating gel to be used during treatment. I have an appointment with the radiotherapy nurse right after my last blast tomorrow and hopefully there will be some more options then. I've made an appointment with a practice nurse for a check up on Monday too. Wearing the dressings has made things a bit more comfortable. I am also glad it has cooled down a bit now as these past weeks of hot weather have not been pleasant. The end is in sight!

[Katykookabura]

Hi everyone. Don't suffer your burns. I saw my GP practice nurse who gave me a prescription for special burn plasters which I put on the burn under my breast. Not only did it stop the chaffing of skin on skin it healed the burn considerably within five days.
So get and see your practice nurse ASAP!
The skin healed so quickly it made me feel so much better and I left my bra off as much as possible only wearing a soft light weight bra or vest with support top in it . Hope this helps especially in this hot weather you all must be suffering. Best wishes, Katy.

[anniemac]

Weepixie time is the only healer. I am also big busted and went through 2 months of hell with my burns.

I tried everything and the only thing I can add to all the above suggestions is this....

dont let skin touch skin I bought 6 gents handkies from the market and kept them in the fridge. When I came home from RT
I would put one under my breast and leave the bra OFF.

Hope this helps

[paged]

Dear all,

So sorry that so many people have had such horrid experiences. This illnes just keeps giving! I'm 5 rads out of 15 into treatment. Touch wood so far so good. I was advised to keep the aqeous cream in the fride and this is really helpful for cooling buring booobies! I too bought some 'fake' genie bra's from the ASDA. They too are ike a tank top with a removable padding inner. Very comfy. What i will say is that I have spent a small fortune on bra's - non wired, tank top and on and on!!!
Good luck all. I don't think the word wimp and cancer go together at all - it such a ride so please do not be hard on yourself weepixie.

Deb xx

[Guest user]

I'm inclined to agree that not much seems to help with preventing burning, I guess it is something you are predisposed to. I've heard from ladies who used all sorts and still have bad burns but most who use nothing at all are fine. My oncologist told me this and said from his experience the only thing he could say was that the more well endowed ladies had a greater tendancy to the most severe end of the scale as far as side effects from rads go. That should have been my clue!
This is my last week now, roll on Friday and hopefully after a few more weeks it will all be history

[Cybele]

I used pure aloe vera gel with great optimism and confidence for 2 weeks before and throughout radiotherapy, having been told by a chemo buddy that she had done so and not burned at all, and it made absolutely no difference whatsoever. It does NOT work for everybody.

I still burned horribly.

My considered opinion now is that if you're going to burn, you're going to burn, and it's a lot more to do with genetics than anything you may use to try and prevent the burning.

[Maryland]

Hi weepixie......all I can add to everyone's fantastic advice is to used cooled, boiled salt water to bathe the most sore areas....worked a treat for me last year especially for the 4 or so weeks after RT when the burns actually looked/felt worse. As for bras, I found some lovely bra tops in Sainsbury's and M&Co that are totally smooth and have little pockets with lightly padded inserts for extra support......I am a larger breasted lady and found the XL very comfortable. So much so that I wear them most of the time now!

[carrie35]

Hi Aloe Vera gel but it must be 100% and apply it regularly. Also drink it as its available from health food shops. Sadly you are late on on your treatment to stop the symptoms all together but it will help and really cool down the burning. You can get a good quality gel on the net. It really bothers me that noone recommends this, my radio therapists know it works but are not allowed to promote it and are told to recommend aqueous cream which has not benefit whatsoever ever.

[Cybele]

HUGE HUG XXXXX
I had very bad burns, too, like JayBee and Vicowie. It's unbelievably vile and you are not being a wimp.
Much as with chemo and oncologists, it is so bl***y enraging, when in a state of acute physical and mental distress, to be told by people who have not suffered what you are going through that it is normally well-tolerated and that you shouldn't be complaining.My radiotherapy nurse was really not very helpful, despite my oozing wounds, and I was not prescribed any of the things mentioned above, just told to keep cleaning it with saline solution, and given silicon dressings.
Breast cancer trreatment is just one long cascade of physical and mental torture and there is no 'right' way to deal with it.
If you're not actually spending most of the day curled up in a foetal position, howling and banging your head against a wall, then you're ahead of the game, it seems to me...
My RT finished on June 11th, the burns got worse for sa week after that, and then it gradually started to heal. Took about two weeks to heal completely.
On the plus side, it has really faded the scar on my nipple from the WLE, and the scar from the SNB, both of which are now barely noticeable.

[Jasminflower59]

Hi Folks

All this sounds very scary as I am due to start my rads on 29th July! I had a WLE on right breast with immediate recon on both sides on 5th June. It has all healed well although all the joins are sore at times and its all quite sensitive. In terms of wearing bras I did order loads of soft ones for post surgery but the ones I would highly recommend are the Genie Bras. They don't chafe, have no fasteners and best of all have a removable inner pad that protects sensitive nipples. Before surgery I was a 42 D and would never have been able to wear anything so flimsy (I thought ) but they have been a godsend particularly in the recent hot weather. They sort of hold it all together and no pulling especially underneath where the scars are. You've feel supported. Best of all you can get 3 for 19.99 if you shop around.

After hearing everyone else's experiences on here I'm a bit more worried than I would otherwise have been! I suppose it affects everyone differently but I'm glad I didn't yet go back to work as I can see myself alternating between bra on and bra off several times a day ! You can't very well be sitting in a meeting and sliding your bra through the sleeves of your blouse cos it's become uncomfortable, now can you?! 🙂

Take care everyone ....it will all be a distant memory soon
JF xx

[Guest user]

One week to go until the end of rads and thought I'd update. I saw the nurse again on Friday and she says I have lost several layers from the skin over most of the breast. It's all a bit sore. There is now a kind of moist hole where the nipple should be. She assures me this is still what they would consider a 'normal' reaction but also cautioned that it will probably still get worse over the next 2 or 3 weeks. The skin in the crease under the breast has also split now and needs dressings that look like jumbo sanitary towels, all very fetching with the nice floaty tops I'd planned to wear in this hot weather. I'm also not enjoying not being able to de-fuzz the armpit or use any antiperspirant in this heat. I've had to get some bra extenders as none of my bras fit now. Boob is red and very swollen.
I will start to see the practice nurse at my GP surgery during the week and they will take over 'boob watch' from next week. I can just about manage the dressings myself but need someone to check on progress every few days. I will see the radiotherapy nurse again on Friday right after my last treatment and she is also arranging for me to see my oncologist and he can hopefully prescribe something to help with the healing once the treatment is over. For now all I am allowed to use is the hydrogel. They don't approve of aloe vera or anything else during treatment. I hope it will not get too much worse and in a few more weeks it will all be a distant memory. If it's been effective in blasting some cancer cells it will have been worth it.

[netball]

Sorry to hear you are going through a bad time. I can symathise as I have exactly the same issues. I have big boobs too and the skin from my nipple down to my ribs is black. I have open sores, not just in the crease but on the underside of my boob. I kept telling the rad nurses during last weeks treatment but they just kept saying this is "normal". Well it isn't normal to me! Instead of jumping for joy at finishing my treatment I feel quite miserable. Working in an office with just as many men as women does not fill me with confidence of going to work without a bra (I haven't gone back yet). My skin is very red and boob very swollen. I ended up going to my practice nurse at the doctors and she dressed it for me. When I went back today it was bleeding, weeping and stinging like mad. She has now given me an antiseptic dusting powder which should stop any further dressings sticking and removing more skin each time it is changed. I will let you know how I get on with it.

[jaybee2905]

I had 15 daily sessions of rads (after 6 cycles of chemo), and was left with really bad 'sunburn' all over the breast, which eventually peeled off completely, and although my last rads were on the 14th Feb the remaining breast tissue is still hard and a bit swollen. But the worst thing was the open wound that developed from the blistering underneath in the crease. A wound opened up from my armpit to my breast bone and I was back to seeing my BCN every few days for dressings/progress checks etc. When I lifted the breast up it was like looking into a yawn (sorry if that grosses you out, but I'm just trying to give you an accurate pic of what it was like), and I had to wear dressings like sanitary towels to keep it dry. So your reaction is not uncommon.
But my reason for this reply is to tell you that my BCN told me to ask my GP for a script for silver sulphadiazine cream (flamizine). It's a topical treatment for burns, and my GP hadn't seen it used for this before, but it was BRILLIANT. It prevents infection and helps the burns heal. It's prescription only, but definitely worth asking for, so give it a try.
I know that what you're going through is awful, but try and keep your chin up.
Sending you a big cyber hug.

[Lakeslover]

I don't know if this will help but while I was having rads I worse a halter neck bikini top instead of a bra when I went out. It gave me some support, but was softer, and easy to get on and off.

i also had burns under the breast, I found letting fresh air get to it (when I was at home obviously!) helped a lot. Also flannels soaked on cold water then wrung out helped cool it. Finally my rads nurse alshave me some gel pads to apply which helped the healing a Lot.

[Katykookabura]

Hi Weepixie, I had a burn under breast and the nurse at my GP practice gave me a prescription for special burn plasters. They did the trick stopped chaffing of the burn and healed it. Also found aloe Vera Gel 99% really cooled me down. I had shooting pains like you so took a couple of painkillers about an hour before treatment. Also gave up wearing a bra just light cotton vest and I have big boobs well.
I bought some soft bras from M&S but they were made of a poly mix fabric and made me too hot. The vest tops have support cups in them so give some shape. If you wear very buggy t shirt you don't need a bra. I personally did not care about what it looked like as comfort for me was main thing however it was colder then and with this hot weather you must be feeling miserable with it. Take care you are two thirds through and hope some of the tips everyone is giving helps. Katy.

[BlackSwan]

This sounds really tough. You are definitely not a wimp - just very unlucky.

[Ann_W]

sorry weepixie my last message sounds a bit hard when I read it back I dont mean to upset you your really not a wimp we have all felt exactly like you do
sending you a big squishy hug and lots of best wishes
Ann_W

[Ann_W]

Hang in there weepixie the rad s/e do get better but you have to perservere. Buy a nipple shield and wear it with the soft sports bras ( cheap in asda tesco etc) that stops it catching on clothes. keep putting on all the cream youve been given. I know all this cos I went through it all including very bad burn under my arm. Its now 6wks since last of 15 rads and my nipple is still very sensitive and is erect and painful most of the time. No amount of pain killers seem to do any good you just have to grin and bear it says onc, sorry.

[Guest user]

Hi, I'm sorry you are having a bad time. You are not a whimp, I had a reaction when radiotherapy finished, under the breast and rib cage blistered and peeled. I felt a whimp, luckily the GP I saw had experience of being in cancer team. He was sympathetic, prescribed Double Day Gel which had to be put on then a barrier cream on top. Re clothes and bras, I had to stop wearing any bra support, but when I could again I tried the ahh bra type, got the very biggest, and it gave some support.

[Zuleika]

Hi Weepixie, I'm sorry to hear that you are having a miserable time. I'm fortunate to not be undergoing radiotherapy, so I can't offer any advice about that. But what I would say, as general advice, is make sure you drink plenty of fluids and eat lots of vitamin rich foods, with vit C, for healing. So, lots of strawberries, blueberries and fresh salads. I'm sure this will help.
Best wishes
Zuleila

[Janet_BCC]

Dear weepixie

I'm sorry to read about what you are going through.

Perhaps it might help just to talk over how you're feeling with one of our Helpliners. They can offer practical information and emotional support. Opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000

Very best wishes

Janet

BCC Moderator

[Guest user]

I feel like a right wimp. I've just had the 4th of 6 weekly rads and have suffered from the very first treatment with a burning sensation, heat, redness and some shooting pains in the breast. In the last week I've had more redness and the skin over and around my nipple has peeled. I was marched off to see the nurse on Friday and she said the skin has broken down and will only get worse over the next few weeks. I have gel to apply and dressings to do daily. I've not met anyone else who has had such a bad reaction and now feel like I'm a total wimp. It's really knocked my confidence as that breast is also quite swollen and with these bulky dressings on top I feel I am obviously lopsided and must look totally misshapen. In summer clothing it's hard to disguise. I'm struggling to find any of my bras that are comfortable to wear now. I'm a big girl so going bra-less in public is really not an option and I can't just hide away as I have work to go to. This is really not like me but I'm just feeling a bit miserable right now and looking for anything to make it better