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Aug 2016 Rads anyone?

RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Hi Katkit, Kate?  No, the oncologist is not the breast consultant.  The oncologist usually decides on the best form of treatment after surgery I "think". I'm certainly no expert, I knew nothing before I was diagnosed, I am learning as I go along.  To be honest, I don't really want to know too much as I find it all very frightening.  When I saw my consultant for my results after surgery he told me, no chemo, but rads and Anastrozole  (gave me a letter to take to GP for prescription)   I asked him how many rads and he said that would be down to the oncologist and I would be sent an appointment in the next 2 weeks.  I then saw the oncologist who told me how many rads, told me I'd be on Anastrozole and would prescribe them, I told him I'd already started them.

 

Hope you are ok and enjoying your weekend xx

RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Kim, forgot to say, I got 2 chillow pads off Amazon, pop them in a plastic bag in the freezer a couple of hours before I go  to bed then put them inside pillowcase (2 seperate pillows). I turn the chillow side down towards the mattress and when the first "biggy" kicks usually sbout half and  a half after going to bed, flip the pillow over, lay on my back and I find it really helps.  Trouble is it doesent stay cold for that long once you've used it but does seem to stop the flush/sweat after a few minutes.  I save the second one for as long as I can.  I know I wouldn't be without mine now.  I'm hoping to go and stay with my sister soon for some R&R (she lives by the sea) and I'm going to make sure they are the first thing I put in my case xx

RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Hi Kim, poor you, I know the feeling so well, so tired but can't sleep because of the sweats.  My boob also started to get achey and a few twinges about 5 sessions in, reading others threads I think it's par for he course.  I didn't get any pinking until about 7 in.  Now I'm very very PINK and VERY itchy.  They tell me skin holding very well though.  Have you started creaming?  I know you were worried about using something you hsvent tried before in case of a reaction.  How about using one of the recommended creams several times a day somewhere else and  make sure your skin is ok with it, then if no problems you can start slapping on your boob.  Try to get some rest over the weekend, I'm still not getting hardly any sleep but making do with lots of lays downs when I can xx

Sue255
Member

Re: Aug 2016 Rads anyone?

Hi KatKit

Been out for my eldest daughters birthday meal this eve but no sooner was I back whipped the bra off as it gets a bit uncomfortable after a while! Was nice to go out though.

 

You wondered if the oncologist was the surgeon? I think they are aren't they? I'm pretty lapse at asking all the right questions at appointments and always regret it after. I'm not sure about my lumpectomy dressings whether you keep them on until the checkup in two weeks or not. I didn't ask anything. Is it because it's enough to cope with as it is that we just forget. I don't know.

 

Take good care and keep updating so we know how you're getting on.

 

Nighty night X

Kimucoughdrop
Member

Re: Aug 2016 Rads anyone?

Lesley you have done so well only 2 to go that's brilliant ! 

 

I wish i had held off the tamoxifen until after the rads because I am having such bad nights with the hot sweats  the past two nights I have been looking up radiotherapy problems at 2.00 am. I cannot sleep without a fan going constantly now . 

 

I have done 5 out of 20 rads boob feeling a bit tender today hope it's not meaning my skin will start to get sore. 

RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

I had my op on 8 June, saw consultant on 23 June and he prescribed Anastrozole.  He didn't give me any guidance on when to start so I started taking it a few days later (as soon as I took the letter to GP and got a prescription). I wasn't on the site at the time, if I had been I would have held off starting until I was at least halfway through or finished rads as he didn't tell me anything about the s/e.  Started rads on 29 July, by that time I was awake most of the night flushing and sweating (made worse by having just come off hrt).  Having said that, I now think, the sooner I start the sooner I finish.

 

just got back from 13 out of 15.  Got the weekend off, then just two more to go.  I will be so happy when I've had the last one.  I have to say though that once you've got the first few over with before you know it your on the home stretch.  They tell me my skin is holding up well, it's pink and itchy so last night I took an antihystermin ( not sure of spelling) tablet as they advised and it helped.  Getting twinges and sometime stabbing pains which I can cope with.

 

have a good weekend all xx

Charys
Community Champion

Re: Aug 2016 Rads anyone?

Hi katkit,

 

i held off starting tamoxifen until the week after rads had finished. My oncologist said to 'start whenever practically possible' and whilst it was possible to start before rads....I felt I couldn't cope with the potential for two lots of side effects at the same time. I knew from reading on here that other people had been given the 'go ahead' to start it after rads, so made a personal decision to leave it a few weeks. I've been on it now for....err...6 weeks I think ?! 

 

X

KatKit
Member

Re: Aug 2016 Rads anyone?

Sue I meant to say hope you're recovering well from your lumpectomy....remember the general anasthetic will be in your system a while so rest when you feel the need and be kind to yourself x
KatKit
Member

Re: Aug 2016 Rads anyone?

Hi Sue
Thanks, yes night times are when my mind goes into overdrive! And I can feel the fretting hour starting again!
Now I'm starting to worry about the Tamoxifen....have held off starting it and the radiology consultant said start anytime.....now or after the rads...it's up to me.
I'm also a bit miffed as I haven't seen an Oncologist....my experienced friend said I should have seen them. I saw the surgeon when I got the diagnosis and before the surgery, BC nurse once and Radiotherapy consultant who gave me my surgery feedback as they had messed up my appointments and ended up seeing her before I got the feedbck so feedback apointment from surgeon was cancelled.
So is the oncologist the surgeon? I am confused....do I need to see them? I saw my BC nurse once when I was diagnosed and sometimes get a reply from my emails from her.
Maybe because results were clear and treatment is now preventative that I should just get on with it.
Radiology team are lovely and I have some good friends who have helped me to ask relevant questions and a super gp.
Must be the evening coming that's starting the the mind off! Erk and thanks x
Sue255
Member

Re: Aug 2016 Rads anyone?

Hi katkit
I haven't been on the forum for very long either but I've found it an amazing help. I'm often on my iPad in the early hours because like someone said its the worse time isn't it for your mind to stew over everything.
I hope your radiotherapy goes smoothly. Lots of good advice from folk on here. Only had lumpectomy yest so not ready for my rads yet. Please let me know how you get on. I'm sure you'll be fine. Take good care.
Sue x
KatKit
Member

Re: Aug 2016 Rads anyone?

Hi Sue & Lesley
Thank you so much for your wise words and advice. The journey isn't too bad to Barts just very busy but I've tried a few different routes and opting for the calmest which is a bus.... I'm guaranteed a seat and can be comfy with my headphones on.
Thanks for info about the creams...am getting sorted for it and am sure it's the anxiety building while waiting.
I haven't been moisturising my boob as the wound area is still a little red and a lot of scar tissue but have used aloe vera and cocnut oil before with no problems so perhaps will go with that...and a lot of water!
I think an early night and trying not to over think things is my plan for today!
Thank you again and hope you're all.going along well with everything. Kate x
RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Hi Katkit,  first thing I noticed was the the time you posted!  The early hours of the morning are I find the worst,  you can't sleep, all sorts of things are whizzing through your mind and the fear is overwhelming at times.  The advice and support from others in this site is brilliant.  I've just had my 12th session today, 3 more to go (no boosters)  Yes, it's tiring travelling to and from sessions (most of us seem to have to travel a long way), but  as I was told by others on here before I started that you get into a routine and once you've got started it does seem to go very quickly.  With regard to creams, don't use anything that you haven't tried before just in case it doesent agree with you.  One of the ones they recommend is Cetraben which I've used in the past so knew I was ok with.  I started creaming boob everyday after bathing a week before and three times since starting.  I've been told that my skin is holding  up very well so I must be doing something right.  I didn't notice any difference to skin until about the 7th session, now is pink and a bit itchy.  Was told to drink lots of water to combat the fatigue (I'm drinking litre and half a day) also someone on here said Diet Coke has something in it which helps so been having  a can a day.

 

ive found popping in here for chat, moan or asking advice has got me through (rads and hormone treatment forum) so  just keep doing that xx

susu
Member

Re: Aug 2016 Rads anyone?

Hi Katkit and welcome. So glad you have been reading other peoples experiences and advice, it really does help doesn't it? Great news that your op had good results and that you are all set for the next step. The radiotherapy itself is totally painless but, as you will have read from others, it can be very tiring. This is due partly to the routine of geting to and from the treatment centre every day and then your healthly tissues trying to repaitr themsleves after the zaps. I initually thought I would work during my treatment but they then swapped hopsitals which meant a 70+ mile round trip each day so I took the time off instead, which I was very glad of in the end. As a morning person I had mine timed for first thing each day so I could relax afterwards. 

As for which creams to use, different people favour different types but I used Diprobase three times a day and 100% aloe vera in between as well. Remember to keep using whatever you choose all through the treatment and for several weeks after as you will go on 'cooking' for some time.

I think we all go through the " you've had the op now so all is fine" from well meaning family and friends but as you say, it is not quite as straight forward as that is it? This is where sites like this really help as everyone here really gets it.  Take care and all the best, do let us know how you get on,  Sue xx

KatKit
Member

Re: Aug 2016 Rads anyone?

Hi everyone,

This is my frst posting on here and I really appreciate everyone sharing their experiences and advice.

I had an early BC diagnosis end of May after a routine mammogram, lucky for me they've lowered the age as I didn't notice any lumps or bumps. If I went after my 50th the tumour would have grown and treatment would have been more intense.

So began my breast conserving treatment and on 23rd June, I had a Lumpectomy - 8mm tumour and 1 lymph node removal, all this within 5 weeks of the routine mammogram.

My results were clear and my radiotherapy is starting next week 16th Aug, 3 weeks and boosters in week 4. Plus Tamoxifen for the next 5 years which I haven't started yet.

I feel like I'm prepared and know what to do and what's ahead but there are a lot of different creams and gels people use, part of me feels in control, the other part feels bamboozled and is still catching up with everything that's happened! 

I'm keeping an open mind and hope the radiotherapy's straightforward but also know that side effects may happen and think I will just need to see how I go and adjust accordingly.

I'm off work, the whole thing has knocked me sideways and been an emotional roller coaster. I don't do being ill very well and asking for help has been tough along with managing family members, friends and colleagues reactions and fears can be quite exhausting. I'm the mum, sister, wife, daughter and colleague who supports everyone and has the solution or the right advice, no one's used to seeing me like this and we're all trying to make sense of it. Then there's the fear of what if it comes back or happens again.

Thankfully most people have been encouraging and supporting me to take the time to be well and healthy. Unfortunately a few think if I'm smiling and functioning then I should get back to work, they don't see the me sleeping on the sofa during the day and sitting up at night stressing. I've hardly ever been off work and just appreciate the time to relax, focus on being healthy and reassessing things but then I feel if I'm 'alright' I should be back at work and then give myself a hard time....at the hospital I was told 2 weeks off after surgery should be enough and to plan the radiotherapy around my work hours. I also feel that I don't want to take up precious time of the staff at the hospital asking daft questions as I'm 'alright' and there are others more in need of their time.

This may not have been the right thread and I seem to have gone off on a right old ramble....I guess I needed to get stuff out of my system so thank you if you're reading this!

All I intended to say was about my radiotherapy starting and to share experiences as well as to say thank you as the advice on here is really helpful! 

I should go to bed now....got a bone scan tomorrow followed by a cuppa with an old friend!

Goodnight! 

LouPrince
Member

Re: Aug 2016 Rads anyone?

Thanks for that x

RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Hi LouPrince,  you asked about tiredness when having rads.  I'm 2/3 of the way through, and yes I'm tired, but not getting much sleep at night, plus the travelling involved there and back doesent help.  However, I travel there and back with a lady who started same day as me and after we are "done" and get back (an hours journey each way ) she goes to work.  She said that now she is beginning to get very tired and struggles to get out of bed in the mornings.  She is on her feet at work and when she's at home she's not one for sitting about, cooking, cleaning, shopping gardening and socialises at the weekends.  She is determined to get through this without taking time off work.  I guess it affects everyone differently.  I look at people in the waiting room, some looked drained, others that I know that are right at the end of their sessions look bright and breezy.

 

someone on this site advised me before I started as well as drinking lots of water to fight off fatigue to drink Diet Coke (reason was a bit technical for me), don't know whether it helps or not but Ive taken to drinking a can a day, though have to admit it doesent taste the same without Bacardi in it xx

Happyboobs2
Member

Re: Aug 2016 Rads anyone?

Hi, I was told by my consultant that rads would be 'A walk in the park ' compared to chemo....It was ok, just a bit tiring having so many appointments.Keep moisturised after
each session. There is loads of advice from other ladies on here.
All the best
xx
LouPrince
Member

Re: Aug 2016 Rads anyone?

I don't post very often but I am coming to the end of chemo and I've noted that people report that radiotherapy makes you very tired? I just wondered how bad this was as I'm hoping to return to work part time.I found chemo wiped me out and I thought radiotherapy would not be as bad?Thanks x

Kimucoughdrop
Member

Re: Aug 2016 Rads anyone?

Hi Bonsai glad you found us. I am going for number 3 today so far ok boob slightly pinker ! 

Janey2
Member

Re: Aug 2016 Rads anyone?

Good luck Bonsai - and Lesley I think you hit 2 thirds today, so thinking of you xx
Bonsai23
Member

Re: Aug 2016 Rads anyone?

Looks like I will be starting radiotherapy sometime in August so been reading your comments in preparation 🙂 hope everyone is managing and not feeling too tired. Waiting for my CT scan date so will let you know more soon 🙂
RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Hi Kim, so sorry you're feeling so tired.  I like you have not been getting much  sleep (hardly any) because of hot flushes/sweats so was tired before I started.  To be honest I haven't felt any more tired since starting rads than before, however, I have no motivation to even attempt to do anything, housework, cooking or even seeing friends.  When I get back I just loll about and feel generally low.  I've palled up with two others I meet everyday, one a women who started same time as me, also BC, and she said she's exhausted and has trouble getting out of bed in the mornings and that kicked in after a few sessions.  However, she goes to work after finishing.  The other a man, said once he gets home he has to have a nap for an hour, again that kicked in pretty quickly.  I think everyone is different, and in the beginning I was so frightened and worked myself up into a state of terror that once I was done the relief it was over left me drained and once I got home I felt completely washed out.  Really hope that once you get into the swing of it you'll feel less drained.  I found the support on here got me through at first - I only wish I'd found the site earlier when I was first diagnosed (only found it just before rads started). The July ladies offered lots of tips and support and got me through.  With friends and family you feel you have to put a brave face on, on here we are all in it together and can say how we really feel, which often is scared witless, tired and peed off xx. Ps Kim, sure youve already been told this, but drinking lots and lots of water helps the fatigue xx

Kimucoughdrop
Member

Re: Aug 2016 Rads anyone?

I had my 2nd today which was fine but feel totally washed out, really tired and not up for anything other than laying in the bed. I am sure I shouldn't be feeling like this yet. I know you can feel tired at the end as it cumulative but I am just at the beginning. I am not sure if it's everything catching up with me, I am not sleeping that well since tamoxifen and the hot flushes. When did the tiredness kick in for others ? 

RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Well done Kim, first one is the worst.   I have been slapping on Cetraben 3 times a day, I already used so knew I was ok with it.  Radiologist said today that my skin was holding up remarkably well so I was pleased.  Asked about the sharp pain I experienced yesterday afternoon and evening, they said it was nothing to do with the rads and to speak to my BCN.  It was ok this morning but has just started again.

 

Sandy, I haven't been booked for any boosters (don't know why?) but someone I speak to everyday who started same time as me is down for 5 days of boosters when we finish.  She told me that the the "normal" rads target the tumour site and the whole breast and the extra boosters just the tumour site.

 

My biggest treat now is crossing the sessions of my list and seeing it getting shorter and shorter. Xx

Sandyra666
Member

Re: Aug 2016 Rads anyone?

Hi everyone 

How are you all getting on? I am down to 7 to go yeeha. 3 regular and 4 boost.. is the boosts just targeted at the site where your cancer was or stronger does anyone know?

 

Kim well done on getting through it! Don't worry about the creams. like you I was told just to do what I normally do and use what I normally do. Well "normal" as things are at the minute! As I had stopped using deodorant just b4 radio and didn't moisturise my boobs before all this... My skin is okay so far although my nipples are sensitive and sore. the older male radiographer gave me some cream- diprobase to try and I think its helping. That was quite amusing a 50 plus man advising me about my nipples we both laughed!  have also gone braless the last few days which I think is helping, wearing cotton tops too. (I am being treated in Glasgow)

 

Onwards and upwards!  X

Kimucoughdrop
Member

Re: Aug 2016 Rads anyone?

I did it and was ok. I got a bit upset when I first went in but pulled myself together and laid very still while the machine moved and buzzed. It was quick although I did think I could feel something through my boob but maybe my imagination. I am worried because I have not been moisturising and have got all this new cream to use but the radiographer told me not to use anything that I have not used before.i wish I had tried it out before now. I am worried that I won't moisturising now and my skin will be bad . 

RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Hi Kim,  how did it go today?  How is everyone else that has started doing?  I'm now 9 down 6 to go.  Boob getting very pink and itchy and sharp stabbing pains, only last a few seconds but pretty Intense while they last.      Had twinges over the weekend but nothing like what I've been experiencing this afternoon.  Had some reassurance from someone on the site which has put my mind at rest a bit, will tell the radiologist about them tomorrow.

Charys
Community Champion

Re: Aug 2016 Rads anyone?

Hi Kim, Onllly mmeeeeee,

 

yes, I was told this by the oncologist, she said that there was a fair possibility that I would lose 10 percent of lung function on the affected side. If I recall, my tumour position wasn't dissimilar to yours, yours is more central but mine was off to one side but very high...almost not in breast tissue. I was shocked to hear this, but she reassured me that I wouldn't even notice if it had happened and it would hold no long term problems for me. I asked what the 10 percent loss would be, medically speaking, and she said 'fibrosis'. Not entirely sure I get that but anyway...... I think it is something to do with the position, though I didn't ask this directly as I thought everyone was told the same thing, obviously not lol. To reassure you, I haven't got a cough, nor did I get a sore throat and if anything has been affected I certainly can't feel that it has.

xx

susu
Member

Re: Aug 2016 Rads anyone?

Hi and good luck to everyone going through or about to start rads. I had both treated last summer and the way it was done meant that they go from below your armpit at the side and up through the breast tissue on the first pass and then across the breast tissue from the other side on the second so it will not be directed straight at either the heart or the lungs. The planning appointment and each session is carefully staged to ensure only the relevant areas are zapped!  Take care  Sue xx

RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Hi Kim, I was told That some women get a cough as it was impossible to completely avoid the lung.  Was also told that because  mine is left side there was a risk it could affect the heart.  However, reading threads on other months I see that some women with left side have had to do breath holds which I haven't had to do (so far anyway) so Im hoping that I'm ok there.  I think (not that I know) that they just tell you all the possible side effects.  Ask the radiologists on Monday, they know exactly where they are aiming for on you so will be able to tell you 

 

I had a thickly cough the other day and thought "oh no" but I think that every ache, pain and twinge at the moment is enough to put me on high alert which is not surprising given what we've been/going through.

 

enjoy the rest of your weekend xx

Kimucoughdrop
Member

Re: Aug 2016 Rads anyone?

Getting myself all organised for the start of radiotherapy on Monday. I am getting myself worried about my lung. At the appoitment the consultant said that the radiotherapy would catch a bit of my lung and this is unavoidable. He told me that I may get a cough with this.  I have read posts and spoken to people and nobody else seems to have been told about the catching of the lung. I am wondering if its the position of my tumour - top clevage. Has anyone else been told it will definitly affect the lung?

RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Hi Kim, just wanted to wish you good luck for Monday as its your first one.  I'm now 8 down 7 to go.  No side effects so far just a bit of pinking.  Really tired but that's probably down to lack of sleep due to hot flushes/ sweats all night.  I was terrified my first few times but the actual treatment (once they get you in place) is over really quickly.  For me, and looking at past threads it's the same for everyone, it's the travelling there, hanging around and travelling back that's the worse.

 

Get the  one over and you know what to expect, also you'll find it gets quicker as you get into place once you get used to it.  Remember to cream up and drink water xx

Sandyra666
Member

Re: Aug 2016 Rads anyone?

I have 6 sessions under my belt and 13 to go. So far I don't have much side effects apart from my left breast feeling s bit achy at times. I agree that the most time consuming part of it is getting to the hospital and waiting to go in! The actual treatment is fine you go in and lie with your arms up for 10 to 15 min ( or less I am both breasts so slightly longer) and the machine buzzes about and that's you for another day. The radiographers are very good as well at making it as stress free as possible xx

Teragram
Member

Re: Aug 2016 Rads anyone?

I am half way through radiotherapy at University Hospital Coventry now.  So far it's easy except for parking! 😄 Just lie on the bed and don't move for 2 or 3 minutes.  You don't feel anything and so far I have had no side effects.  The ladies who look after me are lovely. I have a review on Monday after my 8th session.

Kimucoughdrop
Member

Re: Aug 2016 Rads anyone?

I went for my planning and  tattoos yesterday, which was fine. I was worried about holiday my arms up for a while and getting uncomfortable but it seemed quite quick. I am set to start on the 8th August now. I was just reading a forum in America and they were recommending coconut oil. Has anyone else heard about this. I have a bottle of Aloe vera ready to use.

Cag61
Member

Re: Aug 2016 Rads anyone?

Hi all, 

Just found this thread.....I start on 3 August, 3weeks and 1 booster week. I have been told that if you have been through chemo this is a lot easier. I do hope so as I have recovered....well nearly, with the odd side effect from chemotherapy and lumpectomy. Just one last hurdle to get over, which we will all be able to do as we are strong. Glad I've found you .all. Xxx

Cat79
Member

Re: Aug 2016 Rads anyone?

Hi everyone, I'm due to have 3 weeks of radiotherapy and 1 week of boosters. I have my planning appointment on 29th July so they don't expect me to start until 15th August. Good luck to everyone starting soon.

Cat x
RichardsonLesley
Member

Re: Aug 2016 Rads anyone?

Hi, I'm Lesley, I start the first of my 15 sessions on 27th of this month, next Wednesday, last one will be 17th August.  Not sure when in August yours start?  I'll possibly be finished or nearly by the time you get started.  Shame as I agree, it would be nice to go through the journey with someone who is going through the same thing at the same time for moral support, as I don't know about you but I'm pretty anxious about it.  All the very best xx

Kimucoughdrop
Member

Re: Aug 2016 Rads anyone?

Hi 

Its good to hear your friend is doing well. Its the unknown isnt it. I have just heard today that I am starting on the 8th August 4 weeks including a booster week. Lets hope its a piece of cake, that sounds good. x

Sandyra666
Member

Re: Aug 2016 Rads anyone?

Hiya mine starts on Monday so 3 weeks of mine will be in august. I'm also having the booster week at the end. A friend has just started hers and she says it is a piece of cake so fingers crossed!

Kimucoughdrop
Member

Aug 2016 Rads anyone?

Hi I have just found out I will be having 4 radiotherapy sessions through August, the last week being a booster week. I am going for my planning next week. I went to see the Radiologist today and he explained lots. He did say they catch a bit of the lung and this can give you a cough. I was also advised about the soreness and tiredness. If anyone else will be having their radiotherapy in August it will be nice to keep in touch and be on the journey with others.