raditherapy planning help please

[Guest user]

re calendula cream my masseur provided me with some so i will ask her where you buy it as she deffo gets it in this country. Im still doing chemo before surgery and rads and i have been using it for split fingers and toes on tax. It is excellent and prefer it to the aqueous cream.

[juliebtaurus]

OOH that sounds painful Lucinda i went on holiday 3 weeks after finishing treatment and still only use factor 50 to my chest and arm on bad side. I also still use aqueous cream religiously every night. But i know i was told you have to be careful in the sun forever after rads so splash on the factor 50 and girls just be sensible

[lucinda]

hi all
I had 30 sessions of rads following chemo, which I finished last August. Because i had missed all last summer we decided to take a short winter break to Lazarote. Only took long sleeve tops as had been warned to cover up following my treatment, however got really burnt on the first day through my clothes.Enjoyed the holiday but had to put on sunblock under my clothes and sit in the shade as much as possible.
My skin was very sore by the time i had finished my rad treatment,had to have dressings and gel under the breast and armpit, so maybe that is why it is still so sensitive.I still apply cream to the area and only use warm water.Just thought I would post a note of caution for anyone planning a holiday or finishing treatment closer to the hopefully warmer weather.
good luck to all with your rads.
lucinda x

[zibzab]

I successfully finished my chemotheraphy but rads I will have not. Because I had mastectomy and mts was in 2 sentinel nodes My lump was 2cm.Have somebody in same situation?

[Guest user]

Planning starting on Tuesday and rads 2 weeks later so am off to get stuff suggested. The radiology dept are great fitting times around work and the bus timetable!

[juliebtaurus]

Hi there my lump was 2.6 mm and stage 2 but grade 3 lump but no nodes affected I also had chemo and 20 rads .Im really glad now all treatment is finished that they threw everything they had at it .hope this helps youre decision

[woodlandmanor]

Hello, I am about to start radiotherapy although my lump was bigger but less node involvement. i had chemotherapy as well. All I do know is that I was told radiotherapy would reduce my chances of a re-occurence by 20% and that sounded worth having! Especially as I am sure it is less difficult to endure than other forms of the treatments I had and you may have had. I would ask them what difference it may make to you and decide from there. I know we don't want anything we don't need to have but I felt it was better to have all that may help in the long term. love to you T XX

[zibzab]

Hi, ladies! I would like to know something about BC treatment with radiotheraphy. I had BC and mastectomy on 23 of august. Now I doing chemotheraphy and after will be radiation, but doctors can not to decide for this (one doctor sed -I must do radiation,other one sed - I can to get by radiation.) My lump was 2 cm and metas were in 2 lymphatic nodes (2/11). Anybody had radiation on the same stage? Thanks for reply.

[Guest user]

Hi Gwendolyn

I tried the Calendula from Boots (homeopathic remedy) but it was far too perfumed. I stuck with aqueous cream mornings and evenings (superdrug £2.99) and Holland and Barrett 99% Aloe Vera Gel after the rads treatment and anytime during the day it got a bit hot!
My nipple has peeled a few times since finishing rads so I have used E45. They have all been a big help.

I have also found Tesco's sports bras the best and put a cotton hanky underneath my boob to stop it rubbing too much. After rads I went home without a bra, very liberating and in bed I am wearing a secret support top now but during treatment wore a cotton sleep type bra from Asda.

I hope it all goes well for you, it really isn't as bad as you may think, the journey is the worst and you get tired as the treatment goes on, but the radiotherapists are all so kind and lovely, you almost miss them when you are finished!

Keep us posted
Lorraine x
Lorraine xxx

[CheshireCheese]

Hi Gwendolyn

I too have sensitive skin, with eczema and I sunburn easily, but didn't get anything more than a good tan from the rads, so it doesn't seem to follow any logical pattern. I just used aqueous cream very frequently and that felt nice and soothing. It's also worth starting to use it for several days before you start rads so that you start out with well moisturised skin (a tip I got from here!)

Sarah x

[Guest user]

I just read through this thread as waiting for daye for rads to start. Did any of you find a source of the Pommade au Calendula par Digestion calendula extract ointment online or did you use a different calendula cream? I have sensitive skin, get eczema and peel/go red if someone even says the word sun. So feel that doesn't bode well for the rads!

[Guest user]

Hi Sarah

I finished rads about 4 weeks ago and am still tired and emotionally exhausted but glad I went on the trip, even though it was a very long way and busy. I think 2 weeks on a sunbed in the shade (maybe Tenerife), would be ideal. My nipple is peeling again (third time) and my joints are very sore indeed but that may just be a coincidence as it has turned very cold and I get osteoarthritis.
When I get up in the morning my boob is painful and am getting quite a few "electric shock" type pains, not sure how long that lasts, was told 2-3 weeks but I suppose everyone is different.
Thanks for sharing your experience, by BCC nurse isn't very forthcoming and, to be honest, she hasn't been through it so what was she know! You girls are a mine of information, keep posting!
(I sound a bit like Bruce and Tess!)
Lorraine xxx

[CheshireCheese]

Hi Lorraine

Sounds like you had a great holiday, despite the rads and everything else. A useful warning about going out in the sun, we're thinking of a winter sun holiday once I've recovered enough from the last operation. You said you were still cooking, is that still increasing after finishing rads? I think you finished rads about 3 weeks after I did (I finished 27th Sept) and for the last couple of weeks I've found it's all settling down. The tanned square patch is fading, the stiffness is easing, although I still need to exercise several times a day to get rid of it, my nipple has just about stopped peeling and it's all back to a normal temperature. So hang in there, it should be a lot more comfortable soon!

Sarah x

[Guest user]

Hi Sarah

Just back from trip of a lifetime to Sydney to visit sister and brother in law, had a great trip but absolutely exhausted as it was too close to rads finishing really, struggling with the jet lag (hence the reason for being on forum in early hours of the morning). The flight was very long and boob reacted with the cabin pressure. Had to be extremely careful with the sun as I did have a bit of a reaction, even though the sun was only out a few days but is very powerful when it is out and goes through your clothes. Wouldn't recommend a long flight after rads or sun exposure (even though I used factor 50 and covered up, or so I thought!). Was told not to swim and glad I didn't as boob still "cooking". The surface of my nipple has peeled and split so am still applying aqueous and aloe vera when it gets hot. Not sure how much longer this will go on for - next rads app. not till mid January so will have to wait and see.

Sounds like you have had a terrible experience with your surgery but you were right to persevere with it as it needed to be done and will be worth it in the end. I do hope you are recovering well and resting as much as you can.

Hope the rest of you are doing ok too

Lorraine x

[juliebtaurus]

Hi there ive just finished 20 rads but the extra 5 were boosters to the actual lumpectomy cavity only. I had chest and axilla and full breast area but it just entailed the machine moving round me to a different angle to treat the other area ( not more sessions)They may send your ct results over to the other hospital if its already been done but you might have to have extra planning if it didnt include all the areas to be treated.hope this helps Julie,PS it was all done quite quick i was only on the table about 5 mins i spent more time travelling there x Julie

[Guest user]

Hi all,

Sue 1/2 way through chemo now all the fec 'done' just wondering about the follow up rads early in new year. (Christie's again :/)
Sue will be having chest wall and full axilla even though had a level 3 clearance after mastectomy, i know everyone's treatment is different but does anyone know if having the 'Full Axilla' done as well means possibly more or extra visits than the 'standardish' 15 rad blasts, does it take much longer than the 'standard' chest area and is it done on/in a different machine?

Also will they be able to use the 'CT' scans they did a couple of months ago at a different hospital or will they also have to redo they're own? Sue is totally fed up of being rolled in and out of scanning machines :(.

[CheshireCheese]

Hi Lorraine
Hope you're now feeling better and enjoyed whatever trip you've been away on, sounds like you deserved a break.
Could be a case of I should have been careful what I wished for! Had my op on the other boob on 26th Oct, seemed to go OK then within hours it all started swelling up madly with a haematoma, so later the same day (midnight!) had another operation to sort that out. Still a bit swollen and very sore, lasting longer than the BC side did. BUT I now have a (nearly) matching pair, I'm happier and more confident, and I'm already wearing clothes that I hadn't touched for months because I was too self-conscious of the mis-match. I was so unhappy with a D cup on one side and an A on the other. So the pain etc will have been worth it!
Sarah x

[Guest user]

Hi Sarah, only just seen your post as haven't logged in for a few days (feeling bit under the weather), hope it went well today and good for you persisting with your request - girl power!

Will be off-line for a few weeks so take care brave girls, be thinking of you all
Lorraine x

[CheshireCheese]

Hi Lorraine
Know what you mean about the still cooking as well. My boob continued to get more tanned for several weeks and my first experience of cording occurred only yesterday. Fought it off with exercise and massage but it made me feel huge sympathy for those poor souls who get cording badly, it must be soooo painful, going by what I felt with only one little bit.
My follow up appointment with the onc is in Feb, 6 months after the end of rads. But I'll be seeing plenty of my breast consultant before then since I'm having my other boob reduced and lifted to match the BC one on 26th Oct - this Tuesday. I wanted to get it over and done with before returning to work so I was extremely persistent in requesting the operation ASAP and eventually they gave in just to shut me up! They'd originally said I had to wait 3 or 4 months after rads.
Sarah x

[Guest user]

Hi, thanks so much for your posts Julie and Sarah, I am so pleased it isn't just me feeling sorry for myself/being self-indulgent.
This is a really weird "no-mans land", I am still "cooking" but no more hospital trips/people to talk to/swap notes with. I too got friendly with several ladies, who were all so inspiring, it really is like a little support group.

Keep in touch girlies and we have all been through so much, it's not surprising, I suppose, that we all feel a bit "lost" when the rads finish. My next appointment seems ages away, I think I may go mad between now and then, I just want to know whether it's all gone but I know I have to wait and try and be patient! We have booked our family trip of a lifetime to Sydney to see our rellies, go next Sunday, can't wait (hoping the hot boob settles down in time for the flight), then it will be Christmas preparations so January will be here before I know it. When are your follow-up appointments?

Keep posting girls and take care of yourselves, we are all troupers
Lorraine x

[CheshireCheese]

Hi curlylol
Congrats on finishing your treatment! But isn't it strange when you just wander out of the hospital after the last one? I really think someone should organise a certificate or a bunch of flowers or something for when you finish! It feels like such an anticlimax. It's a bit like reaching the end of your exams, you expect to feel elated that it's all over and want to go out and party, but you've been focussed on the exams (or treatment) for so long that you can't just switch off.
Sarah x

[juliebtaurus]

im the same Lorraine i finish mine on thursday and although ive wished for this day im beginning to think right thats it go away and get on with it, and after going everyday for 4 weeks im kinda wierdly going miss my daily natter to all the lovely people ive met there we've become a little support group for each other xx take care Julie

[Guest user]

Hi,

Everyone's radiotherapy plan is different but mine was 15 rads and only 10 seconds each side. Wasn't given any creams.
Finished yesterday but feeling very strange now, no rads, no appointments until mid January, it's weird!
I wish someone could tell me now that it's all gone but I know the radiotherapy continues working for weeks/months so I will just have to grin and bear it. January seems ages away. After being through so much in the past 6 months and everyone being so kind, it seems like I am very much on my own to get on with it now.
Has anyone else felt the same?
Lorraine xxx

[swallowtail]

Hi Elaine I am starting mine on the 2nd November which is a fortnight after the planning ( this morning) I was nervous as well but honestly there is nothing to worry about the scan is very quick and I never felt the tatoos,and the whole thing only took about 30mins, hope all goes well for you let us know how you get on,
love Celia.x

[elaine_r]

Im going 4 my planning tommorow having scan and tattos bit nervous sure ill be ok have to have 15 sessions how long after planning do you start im at clatterbridge

[juliebtaurus]

Hi celia and everyone ive had 13 Rads and had my booster planning this am didnt have anymore tatoos but had a green square penned all over my boob and a tracing on acetate incase it rubs off with cream and a photo of markings taken ( i was doing my Cheryl cole pose with 1 arm above head,hope im not in page 3 tomorrow ha ha )ive got 7 more to go and then fifnished x ps i finishe the day you start yours Good luck x ive only used aqueous cream and skin up to now fine

[swallowtail]

Hi miscally I didnt feel anything when they did the tattoos must have been lucky, I hope your treatment goes well, we are having it at the same time will be interesting to compare notes as we go,all the best,
Celia,x

[Guest user]

Hi Celia,

I start on 28th October. Hope it all goes well for you. I didn't like the tattoos, they hurt and one is still sore! I will have to have a second planning session at some point, as they didn't have all my notes and so couldn't do the boost planning today. I hope I don't need more tattoos!
Best wishes

[swallowtail]

Back from the planning and same as miscally given aqueous cream and I didnt see anyone to ask about the calendula either it was so quick only in the hospital 30 mins, I start the treatment on 2nd November just hope that is as quick,
Celia.x

[Guest user]

I had my planning this morning and was given aqueous cream to use, so that is what I will do. They see so many of us I am sure they would only give it out if it helped! I forgot to ask about the calendula cream as I didn't get to chat with anyone - just the CT scan and tattoos. I was so surprised it was finished (only took just over an hour all told)I forgot all the questions I meant to ask!

[swallowtail]

I go for the planning this morning will see what they say regarding different creams, I was thinking of getting the calendula cream that someone said was good,
Celia.x

[Guest user]

Hi, girls
does anyone know if it is ok to use aloe vera straight from the plant? I have always kept a plant for burns in the kitchen or sun burn.
Carol

[tors]

Lorraine, 2 more rads left for me too! Getting bit sore now, just been given hydrocortisone cream today. Hope sll goes well

vickie

[Harebell]

Hi
I also used Aloe Vera 99.9% every morning after my shower and before radiotherapy. It was wonderful and cooling and relieved the inflammation very well. It is difficult to use in the daytime as it sticks to your clothes and then could take your skin with it if you are not careful. It needs to be allowed to dry before you dress.
All good wishes
Harebell

[Guest user]

Hi,

Just an update, 2 rads left to go (yipee) and have found the Holland and Barrett Aloe Vera gel after treatment/before bed to be an absolute godsend, especially if you put it in the fridge when you get home. I use the aqueous cream in the shower to wash and moisturise with in the morning, then the Aloe Vera straight after the rads at the clinic and during the evening/before bed when it get's a little warm.

I am starting to get a little weary and breathless and the journey and parking at St Lukes in Guildford is an absolute nightmare, but the staff are all so lovely and the treatment isn't anywhere as difficult as I expected.

Lorraine x

[Rustyharas]

Sorry, I was going to recommend Weleda because I thought that all their products were alcohol free but when I looked at the ingredients they are not! So ignore this post!
X
Rusty

[Guest user]

Thanks for all the advice. I'm due to start rads in a couple of weeks and was interested in the Calendula cream, but can only find it on US websites strangly, considering it's a French product. But I did notice it contains 4.5% alcohol so maybe the Nelson's one is ok to use? I'll ask at my RT planning appointment on Wednesday.
Gill

[Guest user]

Thanks for all the info, I have been looking on the web but can't seem to buy the french one here. The Nelsons one has Alcohol in and I was told not to use the arnica cream I had been using post op. for haematoma, as it contained alcohol. I will keep looking
curlylol x

[Harebell]

Hi I bought the calendula ointment recommended in the research trial which I mentioned in the previous post. It is called Pommade au Calendula par Digestion calendula extract ointment made by Boiron Ltd, Levallois-Perret, France. I was lucky as I had a friend visiting France who got it for me. I think you may be able to buy it online it costs very little - about £1.75 a tube. I have used two tubes throughout radiotherapy and one since. You can by Calendula healing cream here made by Nelsons but I am not sure if it has the same properties as that used in the research trial.
Best wishes
Harebell

[tors]

Hi everyone

I have done 11 of 19 rads and skin went red today and has stayed red. Few little red bits which am concerned will become blisters. Slapping aqueous cream on twice a day,

I am having mine at the new christie satellite at Oldham royal hospital. There is a designated car park just for us rt patients and it is free. Honestly the new unit there is fantastic and everything a modern hospital should be. Anyone in the vicinity should ask for their rt there rather than the main christie. Easy to get to, easy to park, lovely staff and building.

Vickie

[Guest user]

Hi Harebell

I'm on day 7 of 15 rads for left breast following WLE and re-excision and it is starting to get hot/sore/itchy. Very interested in the calendula cream, where did you get it from?
I am using aloe vera when I come out of rads, aqueous in the fridge before bed, which is lovely and soothing but sounds like you had a much better result. I am very keen to keep well as I am going on a long-haul flight 11 days after finishing treatment so obviously don't want to have to be looking after my boob if it can be prevented!

Lorraine x

[Harebell]

Hi Everyone
I have just finished 5 weeks and 50 grays of radiotherapy. No parking at all at my hospital - have to go by public transport or pay a fortune in parking meters. I discovered a very good research paper (the trial was done in France but is in English)about caring for skin during radiotherapy in which they recommend calendula ointment. I used this straight after radiotherapy every day and again in the evenings. You are not supposed to put anything on your skin before radiotherapy it should be clean therefore i found it best to shower in the mornings to get rid of the ointment. My skin got a bit red in places, but no worse than that. I have very fair skin and the breast care nurse was amazed at how well it looked at the end of the rads and asked for the details. Here is a link to the article: http://www.jcojournal.org/cgi/reprint/22/8/1447.pdf
When I saw the doctors during the last week of rads (two weeks ago) they said that people who looked after their skin throughout had a better outcome - I was not told about this before but it would be helpful if they did. Hope this helps.
Harebell

[juliebtaurus]

Hi girls i strated my Rads 4 weeks after chemo finished but it was then 6 months after surgery so wound is well healed xxx Julie

[CheshireCheese]

Hi Elaine
Usually 4 to 6 weeks after surgery, but it depends on how well the wounds have healed. They won't want to do radiotherapy if there are any areas that are still open and haven't yet healed over because the radiotherapy will make them worse. I started rads 7 weeks after surgery because I had to wait an extra couple of weeks for the wounds to heal.
Sarah

[elaine_r]

Hi ladies when do rads begin i had mx 2weeks ago how much recouporation time do they give you im having mine at clatterbridge thanks elaine

[Guest user]

Hi Sarah
You're right about the parking, it's just not enough for all the patients, I feel like complaining but it doesn't seem right somehow as they are all so kind and trying to make me better.

We too have to pay £1.50 for the benefit, even though we are issued a parking permit (usually £2 an hour) but it is far too stressful sitting there in the parking queue and worrying will be late, so hubby is coming along for the ride and takes the car to the local Tescos and comes back for me when i'm "cooked". Real pain as i'm usually son independent but can't be helped.

Lorraine x

[CheshireCheese]

Hi Lorraine
Sounds like your hospital could do with introducing a new car parking system, it's adding unnecessary stress to an already stressful situation.
Christie Hospital has a designated car park for radiotherapy patients, which is rarely full since most people are in and out fairly quickly. The only irritating aspect is the minimum charge of £1.50 for four hours.
Sarah x

[Guest user]

Hi Julie,
You are so lucky getting transport, I have half an hour drive there and sit for 30-45 mins to park car as oncology car park is only 20 spaces for 3 counties!
Not nice waiting for patients to have their treatment and come out so you can park in their space. I am taking my own dressing gown too as the gowns supplied expose your boobs if you are not careful as they are op gowns you have to put on like a coat.
On the positive side, once i'm in there they are all very caring and it doesn't take long. Then back in the car to let someone else park who's sitting in the never ending queue and the horrible journey back home. Hey ho, all in a day's work.

Hi Swallowtail,
Keep trying for the Asda bras, I got mine on 3rd attempt, typical being popular size but they are really worth getting as they are pure cotton, great with the aqueous cream, don't rub or cut in.
I drove home without a bra on Friday (hussy) first time i've done that but the bra I had on was cutting in (fine after the ops but no use for rads). In a Tesco sports bra today £4, last of the big spenders, but again, very comfortable, can't get more though as cant get my size. The supermarkets are brilliant, especially Asda with their Tickled Pink campaign. Bought a lovely t-shirt as have enrolled for Wear it Pink day on Friday 29 October, hoping the girls at work will take part.

Keep posting and being brave girls
Lorraine x

[swallowtail]

Hi everyone, I am waiting for my appointment for the planning at the moment and was told it would be in the next week or so then the rads about a month after that, thanks for all the replys I am feeling much more confident about it now,have tried to get the cotton bras at asda but they never have my size in will have to keep looking,
Celia.x

[juliebtaurus]

Hi Lorraine i have the same cotton bras from asda and they are so comfortable and soft and if they get marked with the purple pens then hey they are only £3 for two i started my 1st radiotherapy on the 1st oct and have found the staff to be really lovely sensitive and reassuring ( i cannot fault them ) i did have a thin wire taped to my boob at planning session and a couple of indelible pen marks drawn on ( i joked i hope they werent drawing smiley faces on my boobs ) ha and the tatoos were a bit uncomfortabl but not for long and any of the male staff have always gone out of the room and i have 2 female staff for treatment before anything is exposed . We are given a little tabbard like top with a velcro flap that pulls down only to reveal the area treated so you dont feel completely exposed and you take it home and its yours for full treatment ,so i must admit i have found the experience very relaxing ,informative and everyone very proffessional and friendly .I also have a hospital taxi sent for me at home and take me home again so no problems with parking or stressfull journey. Hope yours is the same x Julie