After reading your post where you mention cording I have put for you below the link to some of BCC's publications you might find helpful.
SML 1903 - Just started reading this rads thread out of curiosity and found that we are having ours done at the same hospital, the Royal Berks. Mine were started a day late due to the strike on the monday. I am being treated on machine LA3, I think you may be on the same one as it was not working properly one day last week. I am booked for early appiintments, usually 09.40/10.00 as I like to get it out of the way and the parking is better earlier in the day, besides which I go to work 2 mornings a week so go there straight after. On the day the machine wasn't working properly I had been asked to get changed, then advised I would have to wait 10 to 15 minutes as they were working on it, then another 10 to 15 minutes, then asked if I would like to get changed again and go back to the waiting room. At this point I could sense there was a problem and I calmly said I was happy to stay changed and wait. Because of this they squeezed me in on LA5 instead, which I don't think the radiographers in there were too happy about. While I was sitting in the waiting area I heard them refer to me as 'just a breast'! I appreciate that I'm not a major issue but I'm made up of a bit more than just a breast, even a manky cancerous one!
Apart from that day, and another day when I had to travel to Bracknell (I live in North Hampshire and had my treatment at Basingstoke) I haven't found it too bad so far. I am a bit sore, using the cream the hospital supply immediately after treatment then my own in the evening. I should finish on the 18th so another another 5 to go, 3 of which are boosters. Apart from the one day I've found most of the staff to be pretty good so far. I was in early for a 10.20 appointment yesterday and they called me in at 9.35. The day the machine was playing up I asked why we had to be there half an hour early only to then be expected to sit around while they ran late and was told you only needed to be in half an hour early for the first treatment. It doesn't say that on my appointment card!
Jannie13 - like you I have cording, which is a pain in several ways. I saw my BCN about it last week and she recommended massaging it and some extra physio. I wish there was a simple cure for it but it appears there isn't.
Number 14 tomorrow then 2 days with a lay in, thank goodness, with just 4 next week. I can't wait for this all to be over and get a new year started, just the 5 years of anastrozole to go!
Keep smiling ladies, this will all be behind us one day.
Sorry SML1903 that your under arm area and clavicle area is red and sore. If I were you I would apply the cream more often than twice a day - I probably apply the 7 Seven cream at least 3 times - when I get up, after rads, if it hurts again and at bed time. When I use the cream it feels really rich and my skin feels nourished by it and the symptoms are not too bad so far (of course this might just mean that I am lucky!) It's not great feeling so tired - I am the same way. I'm on a sort of permanent go slow during this rads period in case I impede my recovery and mess up Christmas. It is so difficult to know whether I'm over doing the "taking it easy" or simply being sensible...Still at least I am still able to get myself to the hospital (roughly one hour each way door to door unless I hit the rush hour) and back, and will do so to give my husband a break for as long as I can. Good luck with the soreness!
Hi Jannie13 - I am also just going the exercises given to me after my WLE. You aren't meant to do exercise without warming up first and that has been my logic - as a control freak I don't like to fully trust the experts. The radiotherapists are remarkably relaxed about my shoulder problems and do not give any advice - but I think that is because they are not trained to give advice, surprising really. Like you lifting my arm sideways hurts me as well and so I am glad that I do not have to do that when I have rads. I pestered my GP for an ultrasound about this and it turns out that I have a rotator cuff tear - not related to my surgery but to a fall I had earlier this year. I have not yet managed to find out what to do the rotator cuff injury but apparently exercise is not the complete answer and in some cases is a bad idea. I am following the basic rule of "if it doesn't hurt then it is OK". Perhaps you need to ask your Oncologist/GP about why you cannot life your arm sideaways? Day 9 today!
I am still connected so hope the problem has been solved now. I am really lucky as the hospital is only a 15 minute journey from my home and parking is quite easy. I couldn't believe it today when I was called in 20 minutes early for my appointment ( we have to arrive 30 minutes before appt). The radiologist that I seem to see the most is very nice and keeps me informed about what is going on.
My breast area, under arm and clavicle area are very red now and quite sore even a bit painful sometimes. I am still applying the aqueous crem they gave me 2 x a day which seems to help. I can't believe how tired this radiotherapy is making me feel and find myself falling asleep when I get home.
Take care SML x
I havent been in on the thread recently because I am having problems with the internet connection. Just about to get ready to go for my 10th zapp so only 8 more to go after today. Hope everyone is ok and will catch up when I get home if I am still able to get a connection. Best wishes everyone SML x
indigo52 - yes 7th session and I was seen 10 minutes early! It must be a worry having developed a rash and some swelling on your arm. I hope that your meeting with the doctor goes OK tomorrow. Did they give you any advise about the rash/swelling?
Good Luck Zonda and welcome! It's not ideal timing is it having rads in December - still I guess we are all in a hurry otherwise we could ask them to postpone it. I had my 7th treatment of rads today and felt rather faint as I walked out of the hospital - so it is slowly beginning to affect me more and more. I know what you mean about being worn out - all of it is tiring - the stress of the original diagnosis and the operation/ the thought/dread of what those rays are doing / the 3 hours a day spent getting to the hospital and back/ the soreness and fatigue/ taking tamoxifen....On the other hand we can only hope that it will all be worth it! take care
Starting rads tomorrow. Well, it will be a practice session and rads will be given the day after. I am told the practice is necessary because I will be having treatment on my breast and below my collar bone. 25 sessions ahead so I will be in the middle of treatment over Christmas. It's the start of the end. The last hurdle but I am not looking forward to it. I am worn out from being treated for breast cancer.
Hi Jannie13, yes I hate it too when the radiotherapists don't talk to you. How awful to be in agony because of the cording. Luckily I seem to meet different people most of the time and they are all different - some talk to you some talk over you! I hope that you start to have more helpful and friendly sessions as they really help! I am also not ashamed, albeit a bit embarassed, to be doing lots of stretching exercises before I go in - and I make sure they know that I have problems in both shoulders - and that seems to stop them being too rough. Not a complete solution but what else can you do? Also - I don't know what happened to you but yesterday being day 6 they told me that the treatment would be quicker as they had being doing more checks during the first week until they were sure of my being lined up correctly/ good splash/ you know the incomprehensible jargon! take care
Hi indigo52 and welcome! You started the same day as me. I have been drinking copious amounts of water, no doubt over doing it. Poor you for feeling ill! As I write to you I am beginning to feel like I need to have a nap, luckily no nausea so far.
I to hate the feeling on the radiotherapy couch and you put it very well! I feel like I am being poisoned more and more every day and dread the side effects. It goes completely against the grain for someone who even refused to take paracetamol. Rads plus tamoxifen - what a nightmare!
I can't believe it Jannie13 I wrote a reply and then this writing tool went on the blink.
The cream is Robin Logan's Therapeutic Seven 7 cream - skin healing and moisturising. I heard about it from this forum and it is rather lovely - rich and moisturing - but quite expensive when compared to E45! It doesn't have any naughty forbidden ingredients in it.
Try looking at http://predict.nhs.uk/predict.html to get an idea of your life expectancy. I have been told by one oncologist that the radiotherapy reduces the risk of cancer returning in my left breast by two thirds. I suppose they don't expect us to quibble about whether we have it or not, since we probably all do.
I think that we are part of a continuing work in progress. I have heard that they are planning to give radiotherapy on the operating table at the same time that they do the WLE. My oncologist is trying to get funding for not doing radiotherapy with some early breast cancer patients. But then if we had developed breast cancer 40 years ago we would have gone into our operation not knowing whether we would have a mastectomy or not!
Poor you having to wait until 15 December and have the whole performance spanning Christmas and the New Year. Is there no way that you can postpone it or are you like me in just wanting to get it over with asap? I know what you mean about the staff hardly talking to you and making you feel like a slab of meat. I have been treated by three different teams so far and each one is different (I have had 4 sessions). My "default" team doesn't let me know they are leaving me and I resent that. A silly thing to get cross about - although I have been "boiling over" a lot this week! (Feeling calmer today which is a relief!) I can't help feeling surprised that having breast cancer and feeling so devastated by the potential enormity of it somehow becomes so routine and "popular" when you find yourself in a crowded waiting room surrounded by lots of people in the same kind of boat. But if you talk to your friends your illness is outside of their experience. Although of course until my diagnosis I thought that something like BC would NEVER happen to me! Sorry rambling, some things are difficult to articulate. Yes lets hope that you feel better when it starts - I don't finish until 19 December so we can keep in touch.
I'm glad your session went better today. Funny how no-one explains things sometimes, leaving you to theorise as why they did what they did. I think that I had a review yesterday - at least that is what they called it. I thought that they just took a longer time lining me up (I hadn't lain down very straight, not being very straight in any case!) and that they were being slower so as to teach one of the the three radiographers that were preparing me. My appointment schedule refers to only one "follow up" which will be just before my last session on 19 December.
I felt much more relaxed about the rads yesterday, rather than freaking out at the idea of it which I had been on my first few days. Do you think that we adjust to it - mentally that is?
No wonder your sessions are more complicated - rads in three areas! I was expecting to have 3 boosters at the end but that was with my default hospital. By luck, asking to go to a more local hospital that would also use the IMRT approach, the three extra originally proposed were considered unnecessary. Everyone it seems has a different opinion, but at least (hopefully), it worked the right way around for me.
I am a bit sore but not too much to complain about. I woke up early this morning feeling sore and so applied the Seven 7 cream that I referred to in an earlier post, and the discomfort eased off. I am feeling tired but not enough to know whether I am being a hypochondriac about it!
Yes two days off - what luxury. Even though the hospital is "only" a 40 minute drive away the whole journey there and back, allowing time for parking and getting to the Radiotherapy unit, waiting because they don't run to time, takes at least 2.5 hours. That does break up the day and I don't know how people who work full-time can manage it.
Another good session today as I was a few minutes early going in. It has just occured to me that it might have something to do with me telling the radiographer that I am diabetic and that on Tuesday I hadn't been able to eat. I was afraid to go to the shop to get something in case I was called so maybe they are trying to avoid having to deal with me having a hypo, lol.
Well I had my review today and what a waste of time that was. The person doing it just walked along with me to the treatment area asked me a few questions and said she would see me next week. I nearly said that she needn't bother.
I am having rads in three areas as I had a grade 3 tumour and it had spread to my lymph nodes under my arm which were all removed and also rads to the clavicle area. It seems to be when they zapp my clavicle area that they have to make sure my chin is out of the way. I haven't felt anything when under the rays but afterwards it has been a bit sore but only on and off for a while and the areas feel a bit hot for a bit. They also did some planning today for my 3 boosters at the end, they put another instrument on the machine that presses lightly on to the skin just for the boosters. Are you having any boosters at the end of your rads?
Hope all goes well tomorrow and then yay 2 days off, great. take care x
You started your rads the day I was meant to start but it was changed because some of the radiographers at the hospital were on strike and eventually after 3 more appt changes I started on the 27th November. I finish on the 22nd December so nice to know it will be finished before Christmas. My sessions have gone well so far apart from the really long wait on Tuesday. Since then though they have been more or less on time which has been a relief. Hope your sessions are going well. Have you had any side effects yet? I have started to go a bit pink in a few places but nothing to really worry about.
Please feel you can join in this thread as the more the merrier as the saying goes. Take care x
I am glad that your session went better today. That is a record, only a 10 minute wait! I only waited 15 minutes today. I am curious about the need to position your chin correctly. I asked my radiographers yesterday about whether I needed to hold my head in a particular way and they told me that there was no need as the rays would only touch my breast. Perhaps our treatment plan is very different? I had a 10mm grade 1 not particularly aggressive tumour that did not spread into the lymph nodes; clean margins...Also you are having a review already whereas only one is booked for me on the last day, which will be day 15. I am not pink yet but feel a bit "scalded". I have been applying lots of E45 cream and today started using Robin Logan's Therapeutic Seven 7 Cream, as I saw it recommended on previous posts. I hope tomorrow goes well also! Do you feel anything when you are under the rays? Today I could feel a sort of vibration - but it could just be my imagination.
Yay! Rads much better today as only 10 minutes late going in for 4.10 appointent and home by 5.10. The radiologist's were not so rushed today and took time with getting me in the correct possition even remembering to measure the distance from my chin to chest so it didn't get zapped. Wondering if later appointments are better but whose to say. Have 1.00pm appointment tomorrow followed by review so hopefully not a repeat of Tuesday.
Hope everyones rads went well today and no one is suffering any side effects. Have noticed some of my skin is starting to go pink so putting on plenty of cream.
Take care x
Thank you Lola for your kind words. I think I have calmed down a bit now although I am still not looking forward to tomorrow. As I didn't have my chemo or surgery at this hospital my specialist breast cancer nurse is not there and I don't know any of the staff at the RBH. I am a bit reluctant to say anything in case it is normal to be kept waiting for so long. Having said that it seems rather odd that other patients seemed to come and go while I was still waiting. I have a review on Thursday so I may say something then. I feel sorry for the staff as I am sure they do their best. When I finish treatment I will definitely fill in one of their cards reviewing the department. The least they should do is keep patients informed about what is happening.
I am glad the radiographers are being gentle with you and as you say the radiotherapy has to take precedence. Someone in another thread I was following did say that they were getting back pain during their sessions and so she took pain killers before her treatment.
Take care SML x
Dear SML1903, how awful it sounds, poor you! It is a horrible thing that we have to endure. We do it because we have no choice. These Radiotherapy departments seem to be really busy and all you can do is wait - I have done so much waiting since I was diagnosed and at every stage - in stress terms it has to be the worst bit. Would it be a good idea to talk to your oncology nurse - or whoever has a pastoral role with this phase of your treatment? If you word it correctly no-one is going to give you a hard time about it, and it might help as they will want to support you through the next sessions. Perhaps you could ask the radiographers if your chin is in line as you are really nervous of being radiated in the wrong place - especially if the next session seems as hurried. It is your body and the effects of rushed therapy will be your problem and not theirs.
As regards my rotator cuff issues I did tell the radiographers and so they were "gentle". The trouble is that the radiotherapy takes precedence over the shoulder problem.
please take care and keep me posted
Have come home from my radiotherapy feeling rather tearfull as have had such a horrible time of it. For some reason we are told to arrive 30 minutes before our appointment which I did but only to find the machine I have was not working and there was a 30 minute delay. Needless to say I waited and waited, no one comes to tell you what is going on and others were arriving, having their treatment and going. I looked for someone to ask but couldn't find anyone. Eventually after waiting for 11/2 hrs someone comes and says it will be my turn at 2.25 so I wait patiently and 2.25 comes and goes but I still wait and eventually at 2.50 I get called in. They are in a rush to get me out the way and I dont feel they did my treatment very well. They are always particular about measuring the angle of my chin to make sure its not in line with the radiation but didnt bother today so may have got it radiated. I eventually left the hospital almost 3 hours after arriving. I really do not feel I can face it again tomorrow and just want to forget it. I have 4 treatments now and only 2 have gone well and 2 I have had to wait for what seems ages. Sorry to have such a moan.
Meant to say I had surgery on my right shoulder for rotator cuff problems and it seems to have solved the problem but hope you found it more comfortable today. Are they aware of your problem as I have also had surgery for a ruptured disk in my neck and they were really good about finding a possition that was comfortable for me. It might be worth mentioning it if you still find it difficult. Take care x
I have my first session as planned yesterday. There was a 30 minute delay and then I was in. I know you will probably think that I am a drama queen but I could sense the radiation as a sort of intensity/ glow. My breast also feels very slightly scalded, although it looks OK. I also found it very uncomfortable being stretched out as though on some kind of medieval rack - but that is because I have rotator cuff problems with both of my shoulders - they must have thought me mad when they caught me sneaking in some shoulder stretches just before going in! I really hope that yesterday's experience will not be typical and have armed myself with E45 cream/ aloe vera etc.
Hope you haven't too long to wait between your planning session and actually starting your rads. I think it's normally about 2 weeks but I waited 3 as they changed the first one 4 times. x
I am having my rads at the Royal Berkshire Hospital although I didn't have my chemo or surgery there. I also had my wle and axillary node clearence in September but rads delayed because of problems afterwards.
After the long delay on Friday waiting around for nearly 2 hours because of problems with the machine I went prepared today. I took a book with me and got a coffee straight away but to my surprise I only managed a few pages of the book and didn't get chance to drink my coffee before I was called in. I was out after about 20 minutes and ready to go. How did your first session go today? x
I started my rads last Thursday 27th November but most sessions will be in December. If there is anyone who would like to share experiances worries and advice it would be good to share the journey with you.