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July RADS anyone???

Snow Leopard
Member

Re: July RADS anyone???

Hi VG and welcome!

I finished rads on the 19th. Saw consultant yesterday and took first Anastrozole this morning!

All the best with your rads. 

Hope everyone is doing ok. Hang on in there if you're struggling. The great thing about rads is that it does come to an end very quickly!

Pat xx 

JenJen
Member

Re: July RADS anyone???

Hey VG xx didnt see your post sorry 🙂 welcome to the July rads fellow Nov girl x
RichardsonLesley
Member

Re: July RADS anyone???

Thank you Jen,  all this support from others who have already started (or finished) is so helpful and comforting.  I'll be glad to get started and can start crossing off the days.  I'm getting so panicky and what's not helping is lack of sleep (night sweats) and I have completely lost my appetite, I feel like throwing up When I try to eat  (I can't afford to lose any more weight)  I bought some complan today so at least I have some nutrients inside me.

 

Guess today will day day 5 for you, hope all goes well xx

 

ps, that made me laugh - Hands up, baby hands up"

JenJen
Member

Re: July RADS anyone???

Hi Lesley x welcome to the July ladies

Just to say what the other ladies have said its a few minutes and they seem to speed up the more settled you become in the environment. First session is longest as they have to check measurements are still right from planning scan then it gets quicker.
I was anxious even though I have worked in that environment but as everyone says they can see you on camera and are about 10 steps away at most.
I had zap 4 on friday and it was so quick I didnt realise they had switched the machine on.

They will help you lie down then shout lots of numbers at each other tell you they are popping out and will be back soon and it really is soon. They pop back in move the machine and leave again then pop back in and thats it your done usually unless you are having another area done then they pop out again.

The machine isnt enclosed you can see the ceiling and there is usually music playing. I had to try not to laugh at "hands up baby hands up" last week as I lay there

Hope all goes well x any questions pop in here

Remember moisturise lots , exercises (your post op ones if you havent been given any others) keep your arm and shoulder moving as much as possible and stay hydrated.

Hugs
Jen x

RichardsonLesley
Member

Re: July RADS anyone???

Thank you Pat, this site is so reassuring and helpful.  I'll let you know how it goes after Wednesday's first session, and hopefully in a while I'll be able to add to the supportive comments on here xx

Snow Leopard
Member

Re: July RADS anyone???

Hi Lesley and a big welcome!!!

I think the oncologist decides how many sessions you have and how much radiotherapy in each session. So some people have shorter sessions, some longer. 

My surgeon had originally said I was to have 20 sessions, 15 on whole breast and 5 as booster over the cancer area, but oncologist decided on 15 and apparently the oncologist has the upper hand on radiotherapy. And then my sessions have been an average of 10 mins each. So it's impossible to say how long yours will be. However Lesley I promise you that you don't feel anything. It's like having an X-Ray. Although of course everyone is nervous for the first couple of sessions but believe me you get very used to it very quickly. They can see you on camera and can stop the machine if you wave to them...so try and relax about it if you can. 

These machines cost millions and that's because they are so accurate and cannot hurt you. Please let us know how you get on. 

Thinking of you (I'd be with you to hold your hand if that was possible!!!!).

Pat xx 

RichardsonLesley
Member

Re: July RADS anyone???

Thank you JayG, that's really helped.  So the actual zapping part is only a couple of minutes then, it's just getting you set up that can take the time.  I'm feeling a lot happier now as was really worried about keeping still for several minutes. 

JayG
Member

Re: July RADS anyone???

Hi Lesley. I'm thinking each radiotherapy dept is different. The first treatment for me took around 15 minutes as they took X Ray's first then were very meticulous about my freckle and side tattoos. I begged for a mid chest freckle to be used rather than have another tattoo. Positioning took most of the time. The time the machine was operating delivering beams was very short - less than a minute each side (it gets moved to the opposite side of the table for me). Subsequent appts have taken less than 10 minutes - less sometimes as I often get into the right position by luck rather than anything else! The machine delivering the treatment is on for only a very short time for me - I can hear the buzzing start and stop over the music being played for me. Hope that reassures you a little. Relax if you can - it makes it easier for the staff to position you but don't be scared to say you're nervous. I was in a right state on my first appt day but it was fine - the staff were hugely reassuring and patient which helped. They even showed me their 'control' room so I knew where they were which reassured me if I needed help during the treatment they would be with me in seconds.
RichardsonLesley
Member

Re: July RADS anyone???

Sorry, but can I ask a question to those who have already started?  Snow Leopard, you  said 10 minutes in your thread, a comment I read somewhere on a previous months rads thread someone said it took literally seconds.  I was told it will take about 15 minutes or so to "set me up" then 5-6 minutes to 'do me' by someone I spoke to in the waiting room at my scan/tattoo session.  Im really anxious about my first session on Wednesday and when I read the seconds comment I was thrilled, seems that was probably wrong. 

RichardsonLesley
Member

Re: July RADS anyone???

I start my rads on Wednesday and started taking my Anastrozole 3.5 weeks ago.  Yes, it seems every consultant differs.

JayG
Member

Re: July RADS anyone???

Hi VeloGirl and welcome:) 

it seems we all have such different treatment regimes which I guess shows how far things have evolved in the treatment of breast cancer - personalised medicine certainly shows up on these threads. I had assumed I'd be given Anastrozole because I'm post menopausal but the Oncologist I saw decided 5 years of Tamoxifen and then a switch to Anastrozole. His explanation to me was my age (54), bone thinning side effects of Anastrozole (apparently Tamoxifen 'strengthens' bone so the effects of bone thinning will be balanced) and relative risk of recurrence in later years mitigated by taking the Tamoxifen. I just bow to his superior knowledge and experience and the thought that he's doing his best to keep me healthy for as long as possible. It's just such a stressful time and it's hard to take in everything I'm told at appointments so I've taken to carrying a notepad and writing notes to remind me as well as having my questions written down so I remember to ask them. Tomorrow is radiotherapy treatment 9 so Tuesday sees the first day of Tamoxifen - he wanted me to start half way through radiotherapy. Good job I wrote it down and set a phone calendar reminder or I'd have forgotten. Having read all the threads I've decided to start taking it at night in the hope that I don't get flushes through the day at work. Having had possibly the most uneventful menopause the last thing I want is hot flushes. This forum is a true mine of valuable help and advice:) 

out shopping in town yesterday I called at the Clarins counter and booked a facial as a treat for the day after my rads finish so I'm counting down the days to August 10th:) 

VeloGirl
Member

Re: July RADS anyone???

Hello folks, I start radiotherapy tomorrow so I'd like to join this thread. I had neoadjuvant chemotherapy starting in November followed by a wide local excision and node clearance in early June. I'm to be having 15 fractions to the whole (right) breast and a boost of 8 fractions to the tumour bed - due to finish 24 August if all goes smoothly. I look forward to chatting with you. I hope you're all having a nice weekend.
Snow Leopard
Member

Re: July RADS anyone???

i started last Monday and yesterday I had my 5th of 20 sessions. As I had feared I did have to wear the breathing gear and do breath holds. The worst part is that they do a scan before to check my position and this adds to the number of times I have to hold my breath. I think I am getting the hang of it now. I am using lots of e45 too and am using pit rock deodorant which was recommended.
I did work last week but am taking leave for the rest of the treatment. My boob is a bit sore already and I take my bra off as soon as I get in so I think that it would be difficult for me to have continued to work for the next 3 weeks.
have a good weekend all and enjoy the break from the routine.
Elizabeth

 

HI Elizabeth, I am so sorry you have the added complication or left-side rads. I'm sure it must just add to the nerves of starting rads! I think it's great that you decided to take time off work. I started to notice the tiredness around session 7 and I was coming home and going straight to bed. Hang on in there. It will soon be over!!!

Thinking of you and hope you're doing ok.

Pat xx 

Snow Leopard
Member

Re: July RADS anyone???

Hi CJRD, I was told that normally people start Anastrozole at same time as starting rads, but they wanted me to start after rads because I have ms (fatigue being a problem). However I have since seen that some hospitals advise everyone to start after rads so it really does seem to vary. 

I think it's not very good that they didn't tell you, and yes you should contact BC nurse. You should have been given clear instructions. But don't worry...it obviously doesn't matter if you leave it till rads have finished. 

I see consultant tomorrow (finished rads last Tuesday) & assume I'll soon have the bone density test and then start Anastrozole. 

Hope everyone is having a good weekend, 

Pat xx 

Anita
Member

Re: July RADS anyone???

Hi cjrd this isn't really going to help but I'm also on Anastrozole & I started taking it before my radiotherapy but I have known people who've been told to take it after they've finished. So it does look like, as with most things connected to BC that we are all told something different & suitable to our individual needs. Have you got a BC nurse you could phone & ask to clarify the situation for you as if they don't know they'd have access to your oncologist to ask. X

cjrd
Member

Re: July RADS anyone???

Hi,

I started radiotherapy on Thursday past. I also have to take Anastrozole but I have not been any guidelines as to when I should start taking it. Is anybody else taking Anastrozole, and if so, are you taking it alongside radiotherapy or have you been advised to take it post radiotherapy? Thank you.

Elizabeth.p
Member

Re: July RADS anyone???

Hi all

i started last Monday and yesterday I had my 5th of 20 sessions.  As I had feared I did have to wear the breathing gear and do breath holds.  The worst part is that they do a scan before to check my position and this adds to the number of times I have to hold my breath.  I think I am getting the hang of it now.  I am using lots of e45 too and am using pit rock deodorant which was recommended.

I did work last week but am taking leave for the rest of the treatment.  My boob is a bit sore already and I take my bra off as soon as I get in so I think that it would be difficult for me to have continued to work for the next 3 weeks.

have a good weekend all and enjoy the break from the routine. 

Elizabeth

Kris
Member

Re: July RADS anyone???

Hi pat thank you for getting back to me ,my second day and it was ok except for the wait to be seen ! Putting loads of e45 on so hopefully be ok ,I hope your doing ok and not too tired xx
JayG
Member

Re: July RADS anyone???

Hi Kris. Hugs to you.
I just had number 7 of 15 sessions then have to have 5 boosters. After my treatment yesterday I had stabbing pains at my SNB site but Chris the radiotherapist advised today that was due to the radiotherapy irritating nerves trying to heal and not to worry. It's normal and I can take painkillers if it's too bad. I don't 'do' painkillers (ex nurse!) unless pain is excruciating which its not - just a bit uncomfortable really. I'm getting used to the routine now. I'm lucky I think; the QE B'ham are incredibly good with their appt timings and often are stood waiting for me despite me being 10 mins early so I'm usually finished by the time I'm due to begin! Only one slight delay due to a very nervous patient who I'd actually sat next to - they literally scooped me into another room within 5 mins of my appt time - very efficient. Bit early for me to have skin issues yet but I'm following all the advice I found on here - slathering E45 on 3 times a day! The dept at the QE gave me a brilliant booklet on what to expect. They advise keep on doing what you did before unless you get a reaction which they look out for and ask about every day. I just changed to a more intense moisturising body cream and have continued to use the same deodorant. Every centre seems to have its own way of doing things I think. One thing I have found here: huge support! Thank you ladies - I'm so glad I'm not doing this without you all:) Hugs to everyone. X
Snow Leopard
Member

Re: July RADS anyone???

Hi Kris and welcome! Smiley Happy

I think the main side effect is fatigue, and most people don't get this until towards the end and afterwards. It's hard for me to say because I have ms so have fatigue from that also, but it's definitely worse right now so that must be the results of rads.

Your breast will get pink...like sunburn...esp towards the end. You need to cream your breast about 3 times a day from the beginning, the hospital will advise you on that. 

Apart from that it's fairly straightforward. You won't feel anything at all. So every day they will put you in position (you just lie there like a rag doll while they get you in exactly the right position) then they leave the room for about 10 mins. The machine makes a few noises and it moves over you (it's a big machine), but all you have to do is lie completely still while this is going on. The radiotherapy team can see you on camera so if you are uncomfortable or anything you can wave your hands and they will stop the machine and come through. But really there is nothing to worry about. No pain or any sensation at all. 

Hope this help and all the very best to you. 

Pat xx 

Kris
Member

Re: July RADS anyone???

Hi im Kris and I'm starting rads tomorrow ! 15 sessions very worried about the side effects , new to this so any help will be really good .Hope everyone else is getting on ok.

Snow Leopard
Member

Re: July RADS anyone???

Hi Sandy and welcome!!! Yes agree it helps to have company and do something afterwards as reward, even if it's only a coffee (which of course is SO much nicer if it includes a slice of cake!).

Cream your breast at least 3 times a day. My hospital said to use E45 but different hospital advise different creams. 

Get yourself a really soft bra that won't rub your skin. I got a couple of breastfeeding sleeping bras on Amazon for £7 and they're so nice and comfy I will continue to wear them. 

That's about it. You won't feel a thing. It's just a case of lying very still for about 10 minutes. 

All the best, 

Pat xx Smiley Happy

Jill1998
Community Champion

Re: July RADS anyone???

Yes,it really cheered me up having some company and maybe going for lunch/drink or shopping or something afterwards ,made the day feel a bit less "lost" to cancer treatment .
Sandyra666
Member

Re: July RADS anyone???

Hi Jill 

Thanks it's my first time on here! I've noted your comments much appreciated. My sister has offered to come with me so looks like I should take her up on it 😀 x

Jill1998
Community Champion

Re: July RADS anyone???

Hi Sandy,welcome to the forum .My tip would be to drink plenty of water it really helped me with fatigue .Also if anyone offers to drive you / keep you company, say yes ,it's gets very boring and company helps.
Sandyra666
Member

Re: July RADS anyone???

Hi everyone! 

I start radiotherapy on Monday eek! Ill be having 19 sessions in all having had bilateral breast cancer at age 38. Any hints and tips? Xxx

 

JenJen
Member

Re: July RADS anyone???

I too work for the NHS JayG and I think im baffling everyone because I always start the hello my name is before they do but its habit.
so today was my first one was in and out as quick as they could be, they were running behind but its a busy dept and they did apologise.
Well done on finishing Pat 🙂 Posh burger in the pub is a perfect way to celebrate 🙂

Hugs to all

Jen x
Jill1998
Community Champion

Re: July RADS anyone???

Well done Pat!!!Its a strange feeling isn't it .I drank a whole bottle of bubbly to myself when I finished whilst torching my bra in the bbq(I had to wear customised one during rads to keep floppy boobs in right place!!!).
Snow Leopard
Member

Re: July RADS anyone???

I've finished!!!!!!! 15 sessions done and over with. Was a bit underwhelming, no bells or anything...so carer and I went to posh pub and had gourmet burger and chips!

Hope all doing well, 

Pat xx 

JayG
Member

Re: July RADS anyone???

Evening:) Rad number 4 done. 11 to go including the 5 boosters. I embarrassed the radiology staff this afternoon - when I walked into the room there were 3 folk instead of the usual 2. Declan introduced himself by name but didn't explain who he was. During the 'lying dead' positioning malarky, I asked Katie who he was and she explained he was a student and did I mind... As it happens no I didn't but it's nice to know who folk are...! Good job he didn't try and touch me tho - I might have been a touch narky about it without knowing who he was. I work in the NHS although I'm not patient facing - this whole experience has reminded me not only how fantastic the NHS really is but how at the end of the day, patients are real people with real lives that are completely independent of their treatment. I learnt more about my booster treatments today and how I'll be marked with a pen so that the tumour bed can be effectively targeted. It seems I have no clips marking the area left after surgery but the planning CT Scan measured everything using wire placed over my incision site as well as internal images - that's good news - I don't need anymore planning and just move from one treatment type to another in the same room with folk I'm beginning to get to know and trust. The area will be covered with yet more Cavilon spray so fingers crossed I don't get skin problems. Chris the radiologist was really nice to me this afternoon, patiently explaining the different types of radiation and ensuring I understood what would happen and why - he even gave me the references to look up (I work in the research arena within the NHS). Seriously hope everyone is well and coping:)
Snow Leopard
Member

Re: July RADS anyone???

Well Em you are past the halfway mark!!!!

I have one more treatment tomorrow and that's it!!! Nurse told me today that the rads continues to work for about 6 weeks, so expect more 'pinking' and also skin breaks. Keep using the cream!

I have the next appointments...a week today I see the consultant & will probably get the prescription for Anastrozole (because I have ms they didn't want me doing rads and medication together). Then a week on Friday I have follow-up in rads to check the skin. 

OH I am glad it's nearly over!!!!!

Hope all of you are doing ok? You are a quiet group! Let us know how it's going. 

All the best, Pat xx 

em32
Member

Re: July RADS anyone???

Hi all. 11 down 9 to go with touch wood no side effects apart from a slightly pink boob! Still having side effects from my chemo though which finish 5 weeks ago!!
Hope everyone enjoys the weekend
X em x
Anita
Member

Re: July RADS anyone???

Yeah Pat only 2 to go. Have a lovely weekend xx

Snow Leopard
Member

Re: July RADS anyone???

Just got back from my Friday rads. Thank God it's the weekend!!! And I only have 2 more sessions to go. 

Really exhausted. I think it's a mix of rads fatigue and MS fatigue...but can rest and recover now. 

Hoping all glow worms are doing ok? Lots of TLC this weekend ladies. We all deserve it. 

Love to all, 

Pat xx 

Snow Leopard
Member

Re: July RADS anyone???

Believe me Jay...after a few sessions you climb on the machine, give your details, let them put you in position and then lie there wondering what to have for lunch. It gets 'normal' very quickly. In fact it then gets boring. Smiley Frustrated

Pat xx 

JayG
Member

Re: July RADS anyone???

So... first session done and it was underwhelming. I think I'd just worked myself into a huge frenzied state of fear and was almost rigid when I got into the room. One of the younger staff kept asking me if I was 'happy' with what she was explaining and I blurted out that 'happy' was too wrong a word in the circumstances! I apologised for my outburst but the older female radiographer just patted my arm in a very non patronising way and smiled at me. All's well that starts well or something like that! I'm back at 10 tomorrow morning and the same on Friday and then my weekend break. I'm really thirsty but think that's because it's hot and muggy rather than my body reacting to being subjected to radiation. Hope everyone is ok and getting some 'me' time which is well deserved:) x
Snow Leopard
Member

Re: July RADS anyone???

Hi Elizabeth, I'm right side but I have heard about the breathing thing for left side. As they probably told you it's to keep the beams away from your heart. They will provide you with everything you need so try not to worry. Also remember that the radiotherapy itself does not hurt at all. In fact you feel absolutely nothing. 

I know how very worrying it all is but trust me you will get very used to it and soon be an old hand!

Look through some of the other radiotherapy threads on here to see if you can read other experiences of having left side rads. 

All the very best...I only have 4 to go!!! Tomorrow and Friday and then Monday and Tuesday and I'm done!

Pat xx (PS you'll be surprised at how quickly it goes....also each session is only about 10 or 15 minutes). 

Elizabeth.p
Member

Re: July RADS anyone???

Anybody had left side cancer?  I had my planning appt last week and had to do some breath holds to see whether my heart moved out of the way.  I got really distressed...I had a nose peg on and a tube in my mouth. The radiologist said they were mapping my normal breathing pattern.  I will have my first radio on Monday and I will find out then whether I have to wear this breath hold equipment.  Anybody having to use it?  How do you find it?

elizabeth 

Bennie123
Member

Re: July RADS anyone???

Hi all

 

Yes, the first session went well yesterday and it's nice to know that I'm on my way! Didn't realise I could get Aveeno on prescription so must call my doctor's surgery right now. Good tip - thank you. I usually drink lots of water anyway, but I'll try to up that dose too.

 

Good luck to everyone else having Rads today - for me it's 2/15!

 

Meg x

JenJen
Member

Re: July RADS anyone???

Hi Meg

I have been told by my rads doctor that I can 100% use aveeno. In fact he would prefer me to use aveeno over E45 as he wants me lashing gallons on everyday and because I already use it in large quantities on my arm and MX scar we know I wont have a reaction to it.
Doctor did ask me to start lashing myself in moisturiser at my appointment last week so 11 days before I start rads as he said that would make a big difference as I already am post surgery anyway wasnt a problem to do this.

Remember you can get aveeno, E45, diprobase etc on prescription given the cost of a big bottle of aveeno I would get it from the drs as using it 3 times a day will use it up quickly and the cost will add up

Also been told lots of water/fluids (decaf tea in my case)will help ensure we stay hydrated and less sleepy.


I start on the 19th July though have had planning etc and have my 2 little dots

Hugs all

Jen x
Snow Leopard
Member

Re: July RADS anyone???

Hi Meg and hope you're first session went well. Each hospital seems to have different advice on creams but mine said E45 as some of them have tiny bits of metal in (why?) and mess with the treatment. You can get a big bottle on Amazon cheap. 

Had my 9th session today so 6 to go!!! The best thing is you don't feel a thing...just lie there and think of England (or under current circumstances it might be less stressful to think of something else!!!).

Let us know how it went. You've been through a lot so I hope you are giving yourself loads of TLC!

All the best, 

Pat xx 

Bennie123
Member

Re: July RADS anyone???

Hi everyone

 

Today is my first Rads session out of 15. I've had my CT and planning session so I'm looking forward to getting started as the sooner I start the sooner I finish! I'm at Gartnavel for mine which is an hour's drive each way so I'm hoping not to feel too tired. I already use Aveeno moisturiser on my new boob each day but maybe I should switch to E45 after reading the tips here? I must ask today about deodorant too. It's great picking up on other ideas - so thank you all so much! I finished my chemo at the end of March and am now 9 weeks post surgery (mastectomy and DIEP rummy flap reconstruction). I have been on Letrozole for around a month. My lymph nodes and a mammary node wasn't clear so I've to have Rads in 5 areas, so I'm thinking I should buy a lot of E45! Will be back on to share my stories as I think it helps others in the same boat.

 

Meg xx

Snow Leopard
Member

Re: July RADS anyone???

Hi Debbie, glad it went well. It's true, you don't feel a thing!

Keep drinking the water and rubbing cream into your breast. They recommended E45 to me & I do it about 3 times a day. After 8 sessions I don't have any peeling, just a pink boob!

All the best, 

Pat xx 

MummyBreenster
Member

Re: July RADS anyone???

Hi all, I'm started, I had my first session yesterday. I didn't feel a thing!!!! Good tip on drinking lots of water, I will try and do that!!
Debbie xx
Anita
Member

Re: July RADS anyone???

Yes sorry Pat I should have said, yesterday when I had my post radiotherapy talk, she said to prevent fatigue carry on drinking your 2 litres of water - not that anyone had told me to drink it in the first place! But strangely I had been drinking more as I felt thirsty but don't know if this was just a coincidence. Hope you manage to get enough rest over the weekend x

Jill1998
Community Champion

Re: July RADS anyone???

Worth a try .
Snow Leopard
Member

Re: July RADS anyone???

Thanks Jill. Going to get a BIG glass of water now!!!

Pat xx

Jill1998
Community Champion

Re: July RADS anyone???

Pat are you drinking plenty of water?I hit a major slump after 7 sessions and the radiographer told me to increase my fluid intake it made a major difference to energy levels .Each day is one less!!!
Snow Leopard
Member

Re: July RADS anyone???

Hi Anita, well done you for finishing!!!! I've read on here that some hospitals ring a bell and make a fuss, but I think mine will be underwhelming too. It seems a very quiet department. 

Well I'm just over halfway done. 7 more sessions to go. Am I tired? If I was any more tired they'd have to call an ambulance. I can barely move! But nice to have the weekend to rest. 

Hope you have a nice weekend and can sigh with relief that rads are finished!!!

Take care and thinking of you, 

Pat xx 

Anita
Member

Re: July RADS anyone???

Well that's my 20 sessions done & I must say how underwhelming the last one was. I don't know what I expected but it was in & out quick chat with radiographer about what to do in next few weeks then out & on way home. Next week is going to feel strange after going there everyday for 4 weeks. Well by the time you read this Pat you'll be over halfway- did you manage to stay awake whilst being zapped tonight? Wishing you all well xx