Next step radiotherapy, have to wait for a letter or phone call for 1st appointment to do tattoos etc. We have a holiday booked for Spain on 16th June hoping we will not have to cancel but oncologist suggested we might have to : (
Thank you Ladies for all your replies and your helpful tips on what to use/not to use. Hopefully everything will go well and might even get more information when I go tomorrow. Once again, I appreciate that you took the time to reply. Kind Regards Alison xx
Snail and Jacquie - pink and a bit hot at this stage doesn't necessarily mean you will have skin breakdown, but they will be keeping an eye on it in case. Try cold water on the treated area in the meantime - I found this helped to cool it down and reduced the pinkness. If it starts to get sore, tell the radiographers immediately so they can refer you to a skin specialist or give you some gel to put on it before anything serious develops. Good luck with the rest of your treatment and hope your skin continues to hold up.
Kaspar - good luck with your first one today. My first session took about 10-15 minutes because they had to establish the correct position, and they also took reference pictures before they treated. The actual treatment is only about 5 minutes, so once they know how to position you, it will be quicker. When you are in position you have to keep very still. You can breathe deeply and swallow if you need to, but that's about it. Otherwise, keep well hydrated, and keep applying moisturiser several times a day - take some with you to put on after treatment. If you are having your radiotherapy at New Cross (Wolverhampton) there's no chance of working through it unless they can give you very early morning or late evening appointments. The machines keep breaking down so mid morning and afternoon appointments are often running way behind schedule - sometimes by as much as 2 hours. There's no way I could have worked through it with the random/ frequently late appointments I was given, even if OH had let me go back to work before I started (they wouldn't in case of fatigue).
Alleck - I'm surprised they haven't already advised you what to use - perhaps they will provide it. The main thing is that you must use perfume free products on your skin. I used aqueous cream, Simple soap and a natural crystalline deodorant (Pitrok) throughout, nothing else, as that's what I was told to use. When I mentioned other creams the radiographers made funny faces, so I have stuck with the aqueous cream. I finished just before Easter, and was advised to continue to use the same products for the next 6 weeks. I have got through 2 tubs of aqueous cream so far, as I have been really plastering it on 4 times a day! It has worked well though. I had 23 rads in total (= 15 whole breast + 8 boosters to tumour bed). There has been some general redness and itching around the nipple and booster area, but my skin has held up surprisingly well otherwise. I have a slightly crusty nipple but the only red, itchy patch now is the booster area. I was prescribed Intrasite (Hydragel) and Instillagel in case of skin breakdown during rads (you can't use aqueous cream on broken skin) and Flamazine to use on burns afterwards. I haven't needed them up to now but I am still hanging onto them in case anything develops over the next few weeks. Will be seeing BCN today and will ask her to check it over.
Hope this helps those of you still being zapped or about to be.
Ive finished my Rads now but still got to use the cream for a further 3 weeks before going on to use my usual creams.
The nurse also gave me a tube of gel called Flaminal Hydro to put on my sore bits and itchy bits if I get them or any rashes.
Hi Alleck I was given some cream at the hospital called QV cream so used that, and before going to bed I used 99% Aloe Vera gel which you can get at Holland and Barett,however the breast nurse said it could be a bit drying so said only use it on top of the cream not instead of, and if I had a bad reaction to stop using it. Also got told to use simple soap as musnt use anything with perfume in. No strong deodorant . ..No hot water on the are to be radiated.
I used a rock salt deodorant and that was ok but didnt get radiotherapy in my armpit, but you will meet up with the breast nurse when you go for your first appointment and she will give you all the advice you need and answer any Questions you have. Hope your treatment goes well xx
Hi everyone, I am starting radiotherapy on Wednesday- 15 sessions. Feeling a bit nervous and anxious. I have seen that people mention using cream. Is this E45 or a special cream? Any advice would be welcome. Thanks Alison xx
Hi Everyone. Thanks Dawn for the congrats for me finishing my Rads. had been going to go out today but in the end felt too tired so just had a restful day in the house which I felt I needed. I suppose everyone is different and for me the Rads definetly made me feel very tired at times . Some days were better than thers. but I also started on the letrazole at the same time so not sure if it was the rads or the tablet making me tired. As for working during rad I chose not to do this as I have found work very stressful of late and think it would have been very difficult for me attending appointments and having to cope with work. Also felt my body needed time to rest and recover from the treatments. Also had to continue doing all the execises the physiotherapist had set for me. hugs from Corrina xx
Your first session will be longer as the do a lot of checking of the information and measurements that the oncologist.planning appointment information, it will usually take about 25 minutes, after that it is usually about 10 mins.
What they will tell you is that if you feel like sneezing, I had a cold when I started mine, then to sneeze towards into the air without putting your hand over your mouth, so that you do not move. It was a question I asked when I started rads. Its amazing what you think of 🙂
Just to let you know that a lady atomicjojo has started a May 2017 radiotherapy thread.
If you'really generally fit & well, it should be quite manageable, but do look after yourself.
I'm lucky in that I could take time off work, so thought, well why not then! My experience was that I would have managed it ok if I'd had to work.
Just bear in mind, any tiredness may come later & may continue 2-3 weeks afterwards - so be kind to yourself.
Thank you Dawn .Glad you are ok .I am ok but finding I need to take it easy today .
It was great you celebrated with your family Corinna .Im going out for a meal to celebrate with my family tomorrow.
Glad you are feeling a bit better Snail and that you have completed 7 already .
Good luck for Monday Kaspar. Think you will have to see how you go as far as tiredness goes. I did feel tired at times but not quite as bad as I thought I would. I am retired now so quite used to taking things easy !
Best wishes for a good weekend everyone.
Hello, I'm finding this all really useful.
I'm starting next Monday. I had a WLE for high grade DCIS which was only 1mm. I don't need chemo or further surgery. I'm probably the luckiest person in the radiotherapy clinic for the next three weeks.
I'm hoping it won't affect me too badly. I need to have 15 sessions. I haven't planned any time off work, although my line manager and HR are aware that my day will be gut short for 2-3 hours a day to attend appointments. Travel to the hospital is no problem- I pass it every day on the way to work. I'm hoping I can still go to the gym. Am I being realistic in thinking it won't affect my usual day to day activity too much?
Congratulations Corinna and Pippa for completing your radiotherapy and for being able to celebrate in style. Hope you can relax over the next few days, but keep slapping on the cream for a bit longer in case of delayed reactions.
Jayne - hope you are feeling better now after the food poisoning (I thought there was nothing worse than the nausea from food poisoning until I had FEC chemotherapy!).
Jacey - glad your first session went well. Follow all the advice they give you on using perfume free toiletries and moisturiser, keep well hydrated, and seek at the first sign of any problems, and you should be fine.
I'm still OK a week on. The booster area is still a bit red and it itchy at times, so I am going to continue applying the cream for the next few weeks. Otherwise I'm fine, and hoping to return to work soon - waiting for OH interview to be arranged.
Have a good weekend everyone.
Thanks LadyBowler and Pippa.. well done forgetting through your Rads Pippa. great to be finished 11 went out for lunch ith daughters and grandkids today to celebrat.. shattere tonight so think I will have an early night.. now will be concentrating on building my strength and staying well.. glad you first session went well Jacey xx
Thank you Ladybowler.Although the three weeks went quickly and it was ok. it is a big relief to have finished !Think I will be celebrating all weekend !
Hope your last session went well Corinna .
Good Luck to everyone still having rads.
Yay ringing those bells for you tonight congrats on finishing your rads, hopefully you are going to celebrate tonight.
Ringing the bells for you tonight my dear, thats it all done no more rads. Enjoy your evening and hopefully you are going to celebrate.
Hope your last session goes well Pippa ! Great you have a well deserved holiday to look forward to. Hope you have a fab time!! and skin continues to be ok.No sunbathing for us this year.I think you have to keep out of the sun for a year!
I only have one more session to go !got some advice on skincare ie to continue applying aqueous cream for the next month.I was also told I will need to apply factor 50 suncream to the area when I go on holiday in three weeks even tho the area will be covered by my clothes !Unfortunately ,there doesnt seem to be any bells to ring in my unit but I will be celebrating tomorrow !
Good Luck everyone !
Jacey - hope your first session went well today and you were able to get into a reasonably comfortable position. Once you have done it a couple of times it will get easier and quicker. As well as wearing loose comfortable clothes on top, it is a good idea to take some moisturiser with you to slap on immediately after treatment, and a bottle of water to sip while you are waiting (which could be a while sometimes!), to prevent dehydration.
Corinna - nearly there now, roll on Friday!
Jayne - sorry to hear about the food poisoning, and hope you feel a lot better now. At least it's only put you back a day, so it won't be too much longer before the bells can be rung. If they are not sure whether you are menopausal or not they might start you off with Tamoxifen.
Good luck to everyone still being zapped any anyone about to start.
Hi All my second last treatment tomorrow . will be so glad when its finished . getting weary of it all now.still continuing to do the exercises for my arm as if I dont do them it definetly stiffens up..hopefully it will improve over time. One of the women that works in the rads room commented that she thought my treatment had gone over really quickly. ha ha I commented she probably thought that because it wasnt her getting the treatment ha ha halarious! Cant wait to be finished with it all on Friday when I get to ring the bell!!! x
Hi All my second last treatment tomrrow . will be so glad when its finished . getting weary of it all now.still continuing to do the exercises for my arm as if I dont do them it definetly stiffens up..hopefully it will improve over time. One of the women that works in the rads room commented that she thought my treatment had gone over really quickly. ha ha I commented she probably thought that because it wasnt her getting the treatment ha ha halarious! Cant wait to be finished with it all on Friday when I get to ring the bell!!! x
Good luck with yur first Rads sesson tomorrow Jacey. I just usually wear my jeans . They never ask you to take your shoes off or anything .just have to take everything off the top half. I always wear one of my very soft crop top bra which I bought at ASDA..withoutfasteners or anything to dig into my skin. I wear a 100% cotton camisole top underneath the bra so I have cotton next to my skin..hope the treatment goes well for you take care xx
Thanks Helena, Dawn and Corina for the support. I did get some sleep, and pushed the negative thoughts down! I know they'll be back sometimes. Just need a little perspective.
Just because I haven't had enough going on, I thought we would have a bout of food poisoning in this house yesterday!!!!
We decided to have a Chinese takeaway on Monday night, as a treat at the end of a nice relaxed weekend, before going back to rads. 4am yesterday the husbando started from both ends, 6am I joined him!
This culminated in me having an Elvis moment and passing out on the toilet, falling and bashing my head, cricking my neck and twisting a wrist! Luckily no hazardous material was left by then, so no cleaning up needed!!! I haven't passed out for years and can only think it was because I was already feeling a bit floopy from treatment. Now have a bit of an egg on my head, but wrist and shoulder are ok.
As I have to travel an hour each way to the hospital, I couldn't go yesterday! Further panic! They were great and assured me it will not be a problem, and have added one onto the end of treatment. Fortunately, I was able to get there today, even though I feel like I've been hit by a truck!
I havent started any tablets yet. Don't know which ones I will be on. They took blood to see whether I am menopausal because it's difficult to tell because of my gynae problems and surgeries. Also waiting for a delay scan. Once that's done I'm guessing the onchologist will decide about drugs.
And the nausea (other than the food poisoning!) seems to be linked to the rads, as it stopped over the weekend while I had a break. The water and carbs definitely help with that, as does not doing too much!
I always wear a cotton sleeper bra and comfy, easy to take off/put on top. Usually with leggings. Comfort is the main thing I think. And I get cold, which is unlike me usually, so lots of layers.
I have found it helpful to wear a top which is easy to take off and put back on again.Good luck ..its easy once you get into the routine.
Snail - sounds like the radiotherapy or the coffee then! I am taking Letrozole but haven't had any nausea from it. It's early days though, as I've only been taking it for just over a week. I haven't had any significant pains either but I have noticed my joints are creaking more! I am also taking Adcal tablets twice a day to help reduce the effects on my bones.
Corinna - I was told the same, that they couldn't avoid clipping the lung. It was one of the main reasons I had second thoughts. But I went ahead in the end and have not noticed any effects on my breathing yet. All you can do is hope that the radiotherapy does the job it is supposed to and any side effects are minimal.
Jaynes1208, I was told to take my Arimidex (Anastrazole) at night to reduce the chance of nausea, not sure if this is relevant to you. I have had occasional nausea briefly but it has passed now. I am experiencing more bone pain from the tablets now, I have arthritis pain anyway in my thumbs, and other places, which is more of a problem now. It is surprising how much we use our thumbs!
hi everyone thanks to you all for sending me some encouragement..im feeeling a bit better today and managed to go out for a walk with a friend.
yes Pippa not long for us now! really looking forward to finishing ..it feels like its been a long haul .
Jayne Im getting radiotherapy on my right side and i worry as they said it would clip my lung so I know what you mean but what choice did we have? we had to have to radiotherapy but we know its not without its own risks ..just have to hope that we will be ok and been told problems are rare so odds on we will be fine!.
wishing everyone a good week take care of yourselves lots of luv xxx
Corinna - sorry to hear about your fall, and hope you are feeling a bit better now. At least you will soon be finished with radiotherapy, and be able to move on. In the meantime, it is best to take it easy until you have recovered from the fall and the fatigue starts to ease.
Jaynes1208 - hope you managed to sleep in the end and that the nausea has eased (Could it be the hormone tablets? Have a look at the posts on the Hormone Therapy threads). I think LadyB is right about anxiety making your mouth dry. The water bottle is a good idea, you could also try dry mouth spray. If the nausea and anxiety are still a problem tomorrow, get some advice from the hospital. In the meantime, please be careful if you are drinking gallons to deal with the nausea, particularly if you are not eating much and/ or have diarrhoea. Yes, you do need to drink at least 2 litres a day, but it is possible to overdo it, so if you think you are, the dry mouth spray may be the answer to the dryness. If you drink too much without eating to replenish the salt your body needs you can develop sodium deficiency (hyponatremia). It happened to me twice during chemotherapy, because of the extreme nausea I had with FEC which the anti-sickness medication did not touch. I ended up being admitted to hospital both times. The warning signs are confusion/ difficulty communicating, uncontrollable shaking and blurred vision. Take care, and don't let it happen to you.
Just a suggestion, but I have a bottle of water on my bedside table so thatif I wake up during the night and my mouth is dry I just have a slurp of it, washing the water round my mouth before I swallow it, works for me. I have done this for years.
It is amazing how the little "anxiety" monster can creep up on us and put our rational mind into an irrational state, had a spell of that last week but thankfully it has passed now.
Hope you have managed to have a better nights sleep.
Hope you are feeling better today Corinna .Its good weve had a rest this weekend and not long to go now! .!
I usually have appts around midday but have been given the first appt on Friday .Travelling in London in the rush hour is no joke !Hope you got to sleep in the end Jayne and youre feeling better too .I felt sick in the first week too and others at the hospital have mentioned that too .
Have a good Bank holiday everyone !
cant sleep tonight, so checking in.
Snail888, I have had nausea and have found that it's in the mornings, when I haven't eaten or drunk for a few hours. I need to drink gallons at the moment to avoid nausea and headaches. I'm trying to drink at least three litres of water, four if I can, plus tea each day. Otherwise I feel sick, get a headache and my lips go sore and crusty, as well as my skin on my boob being more tender.
And im slapping on the moisturiser at least three times a day. We went out for a while today and when we got back I could feel that my skin was drying out. I had to go and slather on the cream to stop the soreness.
My my worst thing at the moment is stressing about my heart. Because it's left side and they've struggled with set up to avoid it, I'm a bit paranoid about any twinge, cough or sensation in my chest! Terrified my heart will be affected and that will be something else I'll have to deal with long term. My logical brain tells me it's fine, but when I'm feeling low it plays on my emotions a bit!
Anyway, now I have got that off my chest (no pun intended), im going to try to sleep! So flipping tired, but can't sleep! How does that work?!! Lol!
I think this is the worst bit, you can see the light at the end of the tunnel but it seems a long way off, but you really are nearly there now and I will be ringing them bells very loudy for you on Friday.
The aches and pains are probably as a result of jolting yourself when you fell. I tripped over my handbag, two and a half weeks after my op which I had moved to avoid my elderly neighbour tripping on it when she was visiting me, fortunately I landed on my good side, but boy did I know about it the next day.
Sending you a Helena huggle xxx