Hi Vonne & Appletree
I've just read your posts and although I hadn’t yet joined the forum in May, I did have radiotherapy running through April, May and beginning of June. I have exactly the same as you describe just above my scar although it is not quite as big as you mentioned. I am not really worried as I’ve read that rads can harden the breast somewhat. Also it does take time for internal scar tissue to heal and settle down.
I’ve had my treatment in France (where I live) and don’t have a BCN to ask, as the system is different to the UK. However I’m seeing my surgeon and having my first mammogram after treatment in a couple of months so am going to mention it then, if things are still the same. I have no other issues or problems with my recovery so hopefully this is nothing abnormal either.
Wishing you both well and take care
Brilliant thanks Appletree, in that case it will hopefully go away soon . I’d heard about scar tissue and had presumed it was just on the scar, but it stands to reason that the tissue around that whole area is affected!
i have had a hard patch on my left breast in the vicinity of the lumpectomy scar since surgery, which was on 24 April. I checked with my GP when I saw him a week ago and he was confident it was scar tissue. He also said it might spread a little as a result of the radiotherapy and now rads are over.
To put your mind at rest, you could check with your Breast Care nurse and with your GP.
All the best
I’m not sure if anyone from May Rads will be reading this and I don’t know if this is the right place to ask, but since you all had the rads at the same time as me I thought I’d ask you all here first! Do any of you have the same thing as me going on?!
A little above my lumpectomy scar and much longer than it I have a hard swelling (it’s about 5 inches in length and 3-4 inches in width). It feels even more prominent when I’m lying down. I’m not at all concerned about it because I’ve had it since shortly after rads finished so I’m presuming it’s something to do with the op and the rads.
I was reading the only other posts on the forum that I could see on this but nothing seems to fit the bill. I know this will be a natural thing but what is it? Does it eventually go away and if so how long will it take?
Does anyone else have this?
When you go to the main section, ie radiotherapy, there is a box on the right hand side at the top entitled "Start a new thread" it will then open a box and you will need to put a title in the box of what you want to call it.
If you look as well there is a June 2018 radiotherapy thread that you might want to post on as there are lots of ladies who are currently undergoing rads who will be able to help and support you
Sorry to hear about the side effects on the nipple, that’s a sensitive area anyway without the rads making it even more sensitive! Everyone’s different, but most of us have the same or similar advice.
Expose the area to air frequently, if you can close the curtains and go semi naked sometimes that’s good for it! No sunbathing...keep it well covered! Try and have as little friction against it and wear a soft cotton bra! If you’ve been given a cream by the hospital use it frequently and let it dry in before you put clothes back on, ask your rads dept for cream if they’ve not given you any. Some people find cooling gel helps and the hospital may also provide that so ask them for it, but if they don’t then there may be other suggestions on the forum as to brands (my hospital gave me one but I didn’t find it made any difference and I think it made my sensitivity worse).
Also, ask them for Polymem dressings, these are non adhesive and can sit in your bra. Do NOT take any kind of dressing from them, or from the BC nurse, if there’s even a very slight adhesion on it! Remember this, it’s extremely important!!! Your own GP can order Polymem if you need them.
I’m sure you already know about using perfume free soap, but I was also given Dermol 500 on prescription as a soap substitute and that’s good. Using only water is good if there’s any cracking or infection.
Don’t be hesitant about taking paracetamol to help sensitivity, and if there’s any itching take an antihistamine.
You asked about se on week 1/2/3.
Potential se peak 10-14 days after finishing rads but remember that everyone’s different so you may get no more of a reaction than you have already. However you may also get pinkness, redness, soreness, pains, and you may get tiredness or sudden exhaustion! Drink lots of water (good advice I got from Helena)!
I developed an extreme reaction to it all (am 15 days post rads and still suffering) but that’s not common so don’t worry! Watch out for signs of skin cracking or infection, and more rarely cellulitis or lymphodoema, or if you’re worried about ANYTHING whether big or small, call the rads dept or BC nurse.
The forum is an excellent place to browse for other advice too!
Good luck, and any more advice just ask....someone is bound to be able to help!
Hello May Ladies
As you're just a couple of weeks ahead of me, you may have some advice....please!
Had no chemo.On Hormone treatment. I've had 12 of 15 RT now. Nipple is super sensitive/warm now. Like it's had too much sun (true I guess!). Any suggestions?? It's well moisturised.
Also, how did you feel the side effects went 1/2/3 weeks after finishing?
You've totally described myself in your post. I'm very emotional and my body is on fire. Everything hurts! I'm now on day 22 of treatment and I didn't expect the emotionalism.
This is my first time on this forum. I really relate to what you're saying about getting more emotional. Why would this happen with radiation? I'm not taking any hormone pills yet. I find myself crying over news stories or even happy events.
Congrats Handbagaddict on finishing rads, I know what you mean about feeling slightly lost, on the one hand relieved it is over and on the other hand feeling on your own. I too have been extremely lucky with little or no side effects, other than not sleeping well and fatigue,which again makes me feel bad for Vonne.
Vonne, I hope you start to feel better soon, you seem to have had a bad time of it from day one. I think you need to take one day at a time and try to rest as much as possible. The ladies on here are all here to give you support, gentle hug coming your way. Xxx
Congratulations on finishing rads Handbagaddict, it’s such a relief, isn’t it?! Sorry to read you’re so exhausted, don’t overdo things and be kind to yourself! Here’s hoping the side effects of your skin and scar area keep getting better and not worse and you get some proper sleep soon! Keep us up to date on how things are going with you, it’s lovely that you want to help others too.
Today my GP told me to cancel my work time away with my husband (which I’d already postponed) and to rest up at home for the next 2-3 weeks. She said I’m now seriously at risk of both cellulitis and lymphedema.
Ive got a mild temperature, I’m still a mess, and some parts are even worse with the infection than before, I just feel disgusting and in pain all the time!
I’ve also bizarrely developed oedema in my legs too which surely can’t be anything to do with rads!
As if that’s not enough, the nurse today attached one of the dressings on me with surgical tape despite me telling her that the rad dept said not to use tape. When I got home it had slipped down and underneath where the tape was now feels like my skin is made of Velcro which is constantly ripping apart!
I feel a little lost and alone in all of this despite the hospital and docs being good with their follow up.
You can tell I’m feeling sorry for myself, but I keep trying to remind myself that it could have been a lot worse.
Oh Vonne, so sorry to hear about how much you are suffering at the moment. It sounds truly awful. I do hope though that with all the help you have received of late, it starts to feel better soon and that your healing accelerates!
I finished rads on Thursday having had 15 normal (breath hold sessions) and then 5 boosters. Yay!! Can't believe its all finally over. Oncologist doesnt want to see me again until January and I don't have to see the surgeon until October. So I'm feeling slightly odd....its as if I've been 'cut off' a bit. Still nice to not have to schlepp up to the hospital every day!
In terms of side effects - well, this is where I'm feeling slightly guilty given what Vonne and some others are going through, but apart from some itching and then a slight change in colour to the skin that's been treated, my skin is completely OK at the moment. I'm still being meticulous about my skin care though as I know there's still time for things to change as its all cumulative. I have in the past couple of days been ridiculously tired at times though, it's like I suddenly walked into a wall of fatigue. Trying to keep up the fluids still and rest, but I'm not sleeping too well at night currently so I'm sure that's not helping. Also, my armpit swelled up around my scar area last weekend and was incredibly sore again plus there was a lump there and it felt very similar to how it had all felt post surgery. All gone down again now though and the radiographers just seemed to think it was the scar tissue reacting to the treatment.
Aside from that, I'm starting my tamoxifen this week, so we'll see how that goes. Oncologist was all a bit blase about after care post the immediate 2 weeks post treatment. Said to just let my skin settle down and then just do as I would normally do during the summer - so SPF 30. No need to stay out of the sunand stay in the shadows! All good therefore.
I really hope those that have also recently finished or are still going having started later in May than I did, are doing well and coping with any side effects. This forum has been a tremendous comfort to me whilst going through this whole thing and I do hope i can continue to lend my upport and offer my experiences to others in later threads!
Hi, finished my rads 2 wks ago and thought I was doing ok, however over last couple of days l have started to have stabbing pains in the breast and my nipple is also very tender and sore now too so it seems that from all the reading ive done this seems quite common after, not got any splitting yet so I really feel for you as this is bad enough...I keep moisturising the area as it's really itchy.
Keep going you've come this far..keep strong x
Oh darling I am sending you a very gentle Helena huggle xxx
You are really going through it and no you are not moaning, you are just venting and that is good because this is the one place you can do that with people who totally understand and get you. Honestly it will start to get better very soon, you have been through so much and Lady you have done it, just hang on in there and you will get through this, you are tired with it all and that is totally understandable, I just wish I was there to hug you in person
Once the anti biotics start to take effect you will feel much better and the new dressings will hopefully do the trick.
Hopefully you will manage to get some rest and things will be at least a bit better in the morning.
Sending you loads of hugs
I couldn’t get through to the radiotherapy dept so called a nurse on BreastCancerCare who was reassuring and advised me to persist in trying. When I managed to get through to the hospital early afternoon the nurse there was extremely helpful, spoke to the rads and faxed my own GP’s with recommendations. I was then seen by the GP straight away. My nipple, breast and underarm have an infection so that is why the pain is out of control. I’ve been given strong painkillers but they don’t take the edge off the pain and have the side effects of making me sick and dizzy, so I guess I just need to wait for the antibiotics to kick in. I’ve been given other stuff to help too so I’m sure things will get better soon. I’ve been told I’ve also got cording which isn’t helping either.
Right now now I’m in pain, I’ve been crying all day, and feel dreadful. I can’t wear a bra because it hurts, but I can’t not wear one because clothes rub on the nipple. I can’t get relief from being topless because the air hurts the nipple too! I get no relief from my axilla either! A different type of padding has been ordered for me so when it arrives tomorrow I’m hoping it might help a little.
The lovely lady at the hospital called me back early evening to find out how it had gone with the doctor and to make sure I’d been given what they recommended, she said she’d call again tomorrow! I’m so grateful for everyone’s help today!
I feel I’m moaning all the time and really feel pretty low and angry now!
I just want the pain to lessen a bit!
I’ve had bad side effects or reactions every step along the way with the treatments and I’ve simply had enough now.
I’m totally exhausted and I’m beginning to wish I had never gone for the screening which picked this all up in the first place.
Did you give yuot rads team a call, hopefully they have been able to suggest/give you something for it.
It doesnt matter if you are "overreacting" rather that and get it sorted my dear.
I am also new here and have had RT session 7 of 15 today, had no symptoms until this morning, when I got up I felt worn out and had a slight headache but I have felt better as the day has gone on, so far I’ve had no soreness of the skin either thankfully!
I started Tamoxifen 5 weeks ago but I’m wondering why some of us start before out RT treatment and some after?
It has now got so extreme looking and feeling that I’m in a lot of pain and this morning parts of it has started ‘oozing’. I’m not sure what to do so will possibly call the nurse or radiotherapy department, but I don’t know if that’s overreacting.
well done on reaching the end of your rads, such a milestone.
I am still feeling tired 10days now since I finished my rads. I would say if uncomfortable, see your bc nurse.
Hope you start to feel you are gradually getting back to normal soon,
Thanks Dizzytalons, it’s good to know that someone else is similar to me! I’m still getting worse, it’s too nasty to describe, so I’ve delayed going away for a week (a work related thing of husband’s!). It’s good to compare your timescale with mine and to know that you’re beginning to feel more comfortable. I’m putting off contacting the nurse but if it looks like it might get infected I will. On second thoughts, I might call them tomorrow...that’s what they’re there for, right?!!!
My journey with radiotherapy sessions finished on Friday (🎈🎈🎈🎈🎈💥💥💥⭐️)
The radiographers told me that any side effects would peak in 10-14 days, so I’m needing a little advice.
I’m have a great deal of sudden exhaustion and in the past two days I intermittently feel feint! (I upped my water, but a can of coke or similar caffeine drink, and a seat, helps at those feinting times).My armpit is so deep red and sore that it’s beginning to look black so I’m lashing the hospital creams on but will speak to the nurse if it continues. My nipple is peeling, swollen, and a vicious red! The whole breast area is now pink or red, it hurts and I have stabbing pains. There are eczema type patches all over and under the bra line, and inside the breast itches too! It’s impossible to wash or even wet under my arm now because it is so tender and raw.
I’m using antihistamine, painkillers, cooling cream, wearing thick Kliniderm hospital foam pads to prevent clothes rubbing, and using moisturising cream all as recommended by the hospital (they’re pretty good). I’m avoiding bras if possible.
I’ve been doing everything recommended by the radiotherapy dept and BC nurse and can cope but I’m wondering if anyone here has or has had similar side effects to me and are a little ahead of me for dates? Did it actually become worse during those two weeks after radiotherapy stops and being told the side effects might peak? Or does it just stay the same but get no better?
I’m supposed to be going away in a few days and need to start thinking about whether or not to cancel!
Hello MellyL, I have also just had my first 4 of 15 rads, and the nurses are fabulous. No pink yet but I find my masectomy scar is tight and warm, so lots of aloe vera to keep it cool.
Fortunately I have no problems with arm movement and find the treatment and putting my arms up all ok, I do pilates now and this helps considerably.
I'm new here and have just had my first 4 RT sessions with Rhianna (my new friend - the machine)
The thing I wanted to mention was preparation as I couldn't find anything on here before I started. I'm suffering shoulder pain due to the surgery/exercises/hormone treatment. Holding the position with arms high above my head is very uncomfortable, especially the early sessions when a lot of measuring goes on. If you're the same, remember to take painkillers. A simple precaution.
Some pinkness after 4th session, which has gone today. Otherwise, no symptoms yet.
Oh I am so glad to hear that everything went well yesterdayand that you are feeling better about it.
Please do not worry about shedding a few tears when you are going through this, it is totally natural and your team will support you so much along the way. I remember the one day I went for my session and the lovely nurse asked me how I was, well the floodgates opened, she just sat me down with a box of tissues, gave me a lovely hug and we got on with it.
I will start the June thread so that you can go on there and be joined by those ladies who are continuing or starting rads in June.
Sending you hugs and have a lovely Bank Holiday weekend
What you are feeling is totally normal and it is compounded by your experience to date, but I promise you will be absolutely fine, this is fear of the unknown, the same as when we started our journey with bc, but once you have the first session out of the way it will be okay my dear.
When I was about to start my rads, I had this feeling of fear because I had done so well up to then that I was going to crash and burn. My boss immediately got me a counsellor who saw me through the whole thing, she was totally incredible, it was lovely having someone to talk to who did not know me, who made sense of what I was feeling and I did not have to worry about saying things to her that I would not have said to my close family and friends for fear of upsetting them. I remember when I want to see her on the morning of the last day of my rads and I told her I was ready to let her go and stand on my own two feet again, it was completely therapeutic.
I would absolutely recommend anyone to have counselling, it is the second time in my life that I have had it and on both occasions it helped me in so many ways
You are still going through active treatment and perhaps they need to be gently reminded of that, but just think very soon you will be at the end of that tunnel looking at the bright light which is post active treatment and we will be rinigng the bells so very loud for you. Dont be too hard on yourself
Sending you loads of love and hugs
that is the beauty of this forum, there is always someone who is able to share something that might be of help. Amazed they did not tell you that at the planning meeting, it was one of the first things I was told at mine, but then different hospitals seem to have different ways
Hope it helps and makes a difference when you have been doing it for a couple of days xxx
Thanks! I hadn’t been told to do this at the hospital so will up my intake and hopefully it will help! Good advice!
When I was having mine they recommended that I try to take in a good 2 litres of fluid a day, on days that I didnt I really did notice the difference with fatigue xxx
good luck with your planning meeting Sunflower. I’ve just read through this thread and it’s answered lots of my questions, so thank you all.
my planning meeting is on Tuesday (29th) so I think rads will start 2 weeks after that and I’ll fall under a june thread here - although am hoping sooner as desperate to crack on and get this all done with! I too was worrying that the tattoos would hurt so good to hear not!
Do those who have already had planning meetings think it’s necessary to take someone with you? My husband darent take more time off work and it’s half term so need him at home (he can wfh) to watch my daughter anyway, so was thinking of going alone. I can ask someone else to join me if it’s thought necessary.
In the blue boob note. We had a competition on here last year to see who had it for the longest, I think it was a lady who could still see a blue tinge 18 months later.
My bcn told me it would be about 6/7 months before it would completely fade, but everyone is different, and she was right, it had completely disappeared 7 months later.
Good luck everyone having their rads today and just think you have 3 rads free days coming up.
I am sure it will be ok if they have organised your planning apt then they are happy with the way it is healing. I know as part of my oncology apt prior to the planning apt, he checked my scar and was happy with how it was healing and I could start my rads.
You will probably have another 2/3 weeks from the planning apt before you start rads so that is another period of healing and honestly your rads team with be keeping a close eye on you as they do, they used to ask me every day how things were, if I had any concerns over the look of my breast they would address them and it was always a positive note. In fact they asked me to stop using the aloe vera 14 days into them as I was oer moisturising, who knew you could do that!! I was advised to just use my E45 and keep it in the fridge to help with cooling.
Honestly your bcn is correct, it does not take long after the rads have finished for things to settle down, everyone is different but mine was looking soooooo much better about 8 weeks after and they are both just thin crease like lines.
Are you taking enough fluid in mate, as that will help with the dehydration effects of the rads which adds to the fatigue.
Sending you hugs
I am 2 days into my 15 sessions and both ends of my scar is still raised, (to help with me dealing with my scar I have taken photos of it- as soon as I came home from surgery, 3 weeks ago and today, so
i can see just how well it has healed).
I am on the understanding that the wound should be healed and not open before rads take place, I am sure they will confirm this with you on Friday at your meeting. But discuss any concerns you have.
When do you start your sessions?
Hope it all goes well x
No, it didn't hurt. Just a sharp moment, literally a nanosecond. Definitely nothing to worry about xx
Oh Vonne, so sorry. I was out at my own rads appointment this morning and so didn't see your email. How did it go? I'm sure if you end up forgetting anything, they'll be an opportunity to call her again and ask about the things you forgot at the time.
Session 14 for me today. One more 'normal' one and then just 5 boosters to go.......
@Daisy - you made me laugh about your trip to A&E. Nothing like a bit of drama to kick off your sessions! Seriously though, hope you are OK.
And finally for today its back to blue boobs..... I did ask my BCN whether it would eventually go or whether i was going to be left blue for ever. It would be interesting to hear everyones elses thoughts and experiences on this. She did say that it would most likely disappear eventually but could take up to 6 months! All the fluids we take during radiotherapy should 'flush' it all out......