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Pre Radiotherapy appointment

24 REPLIES 24
ladybowler
Community Champion

Re: Pre Radiotherapy appointment

Hwin

 

He he, I like that. 🙂 🙂

 

Hope you are having a good day despite the weather

 

helena xx

Hwin
Member

Re: Pre Radiotherapy appointment

Helena, that's exactly what I said after the middle tattoo!  I'd kidded with my other half I was getting the tattoo for the scans and he wanted to know did they have a book of designs to choose from.  After that experience, I think I'll put extra tats on hold for the forseeable Smiley Wink

ladybowler
Community Champion

Re: Pre Radiotherapy appointment

Hwin

 

I have heard people using Aveeno but I dont know if that is tested on animals either.  I used the Pitroc deo as it was alcohol and aluminium free. 

 

I was 10 weeks from op to the start of my rads, they said as long as it was within 12 weeks from the op it was ok.  I know what you mean about the tattoo in the middle it b***dy hurt, if that is what it is like having a proper tattoo I will pass on that one please 🙂

 

Helena xx

Hwin
Member

Re: Pre Radiotherapy appointment

So interesting how much difference there is depending on where you get treatment!  I noticed this all through my chemo too - people seemed to get a whole range of different advice.

I had a very slow start to treatment - so diagnosed 20th February.  Didn't start chemo until 30th March because I had a positive lymph node so they wanted to do all kinds of scans and wouldn't start until after those.  My last chemo was 11th July and then suddenly everything started to speed up... Got 5 weeks between end of last chemo and operation, and then my planning CT for rads 9 days after op.  My first rads will be exactly 4 weeks after the operation.

I am lucky in that I had virtually no pain from the operation (WLE and sentinel node biopsy), so was able to "assume the position"  for the planning scan without any discomfort.  It was quite quick and painless - although they did three little permanent marks, one just under each armpit, and one on my sternum right between my breasts.  The side ones didn't hurt at all, just little pinpricks but I said "Ouch" rather loudly when she did the one in the middle - I think because the skin is thinner there with no padding!

I have had no advice at all on things like moisturisers etc., and I don't like using products that are tested on animals (which rules out E45 and most aqueous creams) so I may be having a chat with the radiographers on the day of first rads 😉  I like the Lionsleaf creams, and have the calendula one that people recommend for radiotherapy, so hopefully they will be OK with that.

I use the Lush solid deodorant bar, again no alcohol or aluminium so hopefully that's OK too.

ollybobs
Member

Re: Pre Radiotherapy appointment

Thanks for the tips ladybowler I use Bionsen so guess that I will ok x
ladybowler
Community Champion

Re: Pre Radiotherapy appointment

Its amazing how different hospitals have different ways.  I was told at my planning appointment to use E45 and 99.9% aloe vera to help cool my breast, half way through they advised me to stop using the aloe vera as I was overmoisturising.  Make sure that you do not use a deoderant which has metal in it, ie aluminium

 

Helena

LadyMondegreen
Member

Re: Pre Radiotherapy appointment

Hi Anniej, I had planning meeting today and wasn't offered any cream nor any advice about which cream to use - in fact the booking in nurse said just use anything I normally use!  Should this happen at the planning meeting or is it at the first appointment?
ladybowler
Community Champion

Re: Pre Radiotherapy appointment

Mandy

 

Good morning and welcome to the forum.

 

Your apt will last about half and hour.

 

You will see the rads nurse first who will go through what happens at the treatment, give you loads of booklets, give advise on moisturising, and your appointment dates and times.

 

You will then go through to have your measurements and tattoos done.  Dont worry about it, it is a bit of a pain as it takes quite some time and you have to keep still.  I had 3 tattoos, one either side and one in the middle, they are not big and just feel as if you have been scratched, a little sharp feeling then done..  they will probably place a length of wire around your breast and it will be held in place with some tape, this is so that when they do the scan this is for them to confirm the area to be treated.  The scan is not painful, just a little noisy as it passes over you and backk it takes about 5 minutes I think, it was a while ago now so not completely sure.

 

You will probably start your rads about 2/3 weeks after that and will have them Monday-Friday for around 3 weeks. 

 

It is important that you moisturise your breast 2/3 times a day whilst you are having rads, make sure that you are taking in plenty of fluid at least 2 litres a day as this helps with the possible dehydration caused by the rads which can lead to fatigue.  I think it is the daily journey that is the tiring thing so make sure that you get plenty of rest when you can.

 

You will know the difference between fatigue and being tired.  I can only describe mine as this heavy feeling on my shoulders from which I will just go to sleep for about 10/15 minutes and then I would wake up and be fine.

 

I have been creating a thread for each month so that ladies who are going through it at that time and for the ladies who are just starting can post and suport each other.

 

I hope this is helpful and not too much information 🙂

 

Helena xx

mandy hamilton
Member

Re: Pre Radiotherapy appointment

hi all i had my op on 4th august , just got my sergions letter no tabs needed as HR0 go for pro radiotherapy app on 8th sept,dont know what to expext realy. ?? i was told to have radio then possibly chemo as i had grade 3.i am going to york for pre op but radiotherapy will be in hull.

LadyMondegreen
Member

Re: Pre Radiotherapy appointment

Thanks for this helpful info Anniej.  I have already bought some Aveeno but it sounds as if I should have waited then.  I already have Simple shower cream as bought that for after my op on the advice of my BC nurse.  x

LadyMondegreen
Member

Re: Pre Radiotherapy appointment

Thanks for the tips Debbie, including the fan idea - that is really helpful.  I sort of hope I don't get offered a choice of times because I have no real idea what would be the "best" time to choose!  

LadyMondegreen
Member

Re: Pre Radiotherapy appointment

Hi Debbie1964. My op was on 1st August. I have now got my planning meeting next Tuesday.
x
Anniej
Community Champion

Re: Pre Radiotherapy appointment

Yes, Debbie, your rads team will supply you with the cream they prefer . I made the mistake of stocking up on E45 cream as I'd read on here that was used. Big no no ! I was given a tube of QV cream and told to use it as often as poss, but at least twice per day. Also, the only shower gel they advised me to use is Simple. I'd stocked up on Sanex 0% in the sales!!! I think the hospitals have their own ideas so I would ask. The fan sounds a good idea. I've just done my tenth today and feel good, although skin is now definitely pink. I've been given a special cream for my clavicle area which is feeling itchy. Instructions are to tell your rads team if you notice any skin changes. Itchy skin can lead to skin breakdowns, especially if scratched. Cool baths, air on boob for 30 mins per day, and laying down to take the weight off are all added instructions as the treatment has progressed. Lucky you to have the same time slot! I've got 20 sessions and they are all  different . Not one session has been on time either, today and yesterday was an hour and half delay . Take a book, or mag or I pad. The radiographers and machines work so hard. The machines do break down. Also, I found out today that if people come in by ambulance they take priority so as not to keep the drivers waiting. Easy peasy compared to chemo! Last lap now . You go get'em! X

ollybobs
Member

Re: Pre Radiotherapy appointment

Thanks for your replies. Great that we will all be going through this at the same time. My op was 16/6 but due to oncotype testing and then my holiday I'm not starting rads until September. I've been prescribed tamoxifen.
Debbie1964
Member

Re: Pre Radiotherapy appointment

Thanks lizzie,  2nd of may was day of my biobsy, wow you have had a wait, hope your feeling well,  im hoping end of september, i will be 6 weeks post op when i have my appointment,  fingers crossed its not to long await.

 

Debbie x

Lizzie
Member

Re: Pre Radiotherapy appointment

Hi Debbie,

My operation was 2nd May and I finally start radiotherapy on 30 August ' However that is pretty unusual - originally I was told it would be about 2.5  months after my op to ensure fully healed.  Looking on this sight 2-2'

.5months after op seems about average.

I've been told as long as it's done by month 5 it's fine although I'm not so sure. I was told my delay was due to lack of staff but I'm sure/ hope that it would have Bern done sooner if they felt it needed to. 

Hope you are doing ok xo

Debbie1964
Member

Re: Pre Radiotherapy appointment

Hi ladyMontegreen

Do you mind me asking when you operation was, so i can try judge when i might start rads, my op was 25th july, hopefully will see you on the rads thread and we can all compare notes lol.

Debbie x
Debbie1964
Member

Re: Pre Radiotherapy appointment

Hi Annie,

Do they supply the cream, as i keep thinking i should stock up and be pre pared, im having my rads done at oxford, my Bn said i would be able to choose a time slot that suits me best, and they tend to stick to that time for all the sessions and also keep to the same machine.

 

Had some advice from a colleague who had rads, she said after every session she went home and sat infront of a fan for fifteen minutes and never got sore,  Have you heard of anyone doing this before , i will ask hospita! If thats good advice before i try lol.

 

Debbie x

Debbie1964
Member

Re: Pre Radiotherapy appointment

Hi ollybobs, i have my appointment exactly same day as you , cant come quick enough now, feels like thats the last hurdle, i dont know how many sessions yet, my breast nurse said ongologist would confirm that at this appointment, i received a copy of a letter that was sent to my gp yesterday, asking him to prescribe me tamaxofen, but i dont no whether this is to be prescribed now or after rads, i will be asking this question next thursday.

 

Looks like us ladys will be in the same rads thread.

 

Debbie x

Anniej
Community Champion

Re: Pre Radiotherapy appointment

Hi Ollybobs, at my appointment I met with my radiotherapy consultant. She discussed my treatment - length of, and the area to be treated. She checked arm movement to cope with the treatment as you need good mobility to hold your arms above your head for a length of time. I didn't need physiotherapy. She explained the side effects, from very likely to unlikely. Produced consent forms and a prescription for my hormone inhibitor. She organised  a CT scan to check everything was OK, and I was measured and tattooed during this. I say tattooed but it's just black dots to line up with the laser beams on the treatment bed. Lots of measurements are plotted and marked down on paper charts. These are used to line you up each time you have treatment. You will have a pre treatment session with a nurse to go over everything on your first session. You will get some cream to put on 2x day. I was asked my preferred treatment slot (am/ pm). My appointment sheet with dates, times, treatment room number and tel number for the rads room was posted out. Hope  this helps. X

ollybobs
Member

Re: Pre Radiotherapy appointment

Hi LadyMondegreen
No I didn't have to have chemo. It went for oncotype testing and came back very low (5%). Where are you having rads I'm at QE Birmingham.
LadyMondegreen
Member

Re: Pre Radiotherapy appointment

No I haven't had chemo as well, I gather you have? If so, hope it wasn't too difficult and you are coping OK with everything?

ollybobs
Member

Re: Pre Radiotherapy appointment

Hi LadyMontegreen. Thanks for your reply. Sounds like are timings are very similar. 31/8 is my first meeting with oncologist. Then like you I have to wait for another hospital to send me an appointment. I am having 3.5 weeks or rads. Have you had chemo as well? Be great to be rads buddies x
LadyMondegreen
Member

Re: Pre Radiotherapy appointment

Is it with the oncologist?  I had this meeting on Monday and he went through with me about the radiotherapy and also the hormone treatment I am to be prescribed (are you ER+?).

 

He gave me a lot of detail about possible things that could happen at the radiotherapy and possible side effects of the hormone treatment.

 

I signed the consent form.  I got weighed and my height measured - don't think I have grown taller or shrunk in height since 1st August when they did it for the pre op! 

 

He then wrote to my GP and I have to go and see him to get the tablets (Anastrozoleand wrote to the (different) hospital where I have the radiotherapy so they can set up the planning meeting - which he said he wants to be next Tuesday but may depend on whether they have a free appointment.  At the planning meeting I will get given the dates and I guess a bit more of a lowdown on what to expect.  I am expecting (hoping) to start around the 2nd week in September - happy to be a rads buddy.  I am only having 3 x weeks though, how about you?  

 

x

ollybobs
Member

Pre Radiotherapy appointment

Hi all.

I've just had my pre radiotherapy appointment arrive for 31/8. What am I to expect from this appointment? All I know is it's a chat and papers to sign then to another await another appointment at a different hospital for an ultrasound? And tattoos then radiotherapy will start. What questions should I ask at pre appointment? Anyone at the same stage and want to be a rads buddy?
Positive thoughts everyone xx