4th session done this am Have to say I don’t suit morning appointments I did not feel well when I got to work My manager wanted to send me home, but I just wanted to sit quiet for a while Think I’ll stick to afternoon appointments in future
Fluffs123 I’ve been watching that programme Back in Time for Dinner Very interesting how our foods have changed so much.
Can anyone give me some info on how the system works with radiotherapy? I’m due to see my oncologist on Tuesday and know I will be having some but don’t know what to expect from this initial appointment, Ive read about planning scans and tattoos but do they happen then or at a later date? Any info would be much appreciated , many thanks Jo Xx
Hi Jo
At the first oncology appointment he examined me and discussed treatment. I then waited for an appointment to come through for my planning for radiotherapy. I think that was about 3 or 4 weeks after I saw the onc, After planning appointment I think radiotherapy started about a fortnight after. Obviously it can vary from hospital to hospital.
Jaye x
Thanks everyone, sounds like nothing is going to be happening any time soon then! ?
Hi Kim. Me too, now i’ve had my 2 nd and hopefully last WLE I’ve got to wait for results (another 2 weeks) before being referred again for rad planning. Fed up with the waiting. Really want to go and spend some time with my family in Somerset in May but can’t plan anything, so frustrating. Bit of a down day but he ho, you lovely ladies keep me going. ??
Hi Kim68
I saw my oncologist on the 24 March. At this appointment I had a check up and discussed my results. They then discussed the next stage of treatment and the risks etc of having radiotherapy. I then signed the consent form. I also met the senior consultant as she likes to meet all her ladies and then a member from the radiotherapy dept who showed me photos of the machines and explained the treatment.
I had my planning on the 31st. I had a CT scan and they took lots of measurements. As the cancer was in my left breast they checked to see if I could hold my breath for 20 seconds as this offers some protection to my heart and lungs. I received my modesty gown which I will use for all the sessions. I should have been given my appointment times but the booking desk had closed for the day (it was after 5). I was able to state my preferred times.
I started yesterday so everything happened quickly.
Hope this helps x
Fuffs, I hope your get good results from your latest op. I ended up having 2 ops as well although for a slightly different reason. Whilst I was having chemo the tumour was shrinking quickly and so they put a little wire marker in - x marks the spot and all that! Then I had a WLE and SNB in January and due to a mistake being made when the removed tissue was xrayed, the marker got left behind. Unfortunately, as it was marking the site of the tumour where there could have been rogue cells lingering it had to come out. So I had another op in March to remove it. Fortunately I didn’t have to wait for results like you but I have ended up with a slightly less ‘pretty’ scar than I had first time round.
Because I had to wait 6 weeks post first op for the breast tissue to calm down enough to do a mammogram to check for the marker, they ploughed on ahead with plans for rads and I had my ct planning appt and tattoos done in Feb. Then when things had calmed down after the second op I had another planning session but thankfully was able to stick with my original tattoos and didn’t have any more 
So I feel for you just wanting to get on with things
AG, I’m curiously to know what a modesty gown looks like?! I just imagine a hospital gown with a hole cut in it on the correct side? I’ve have to wear a gown to get me from the changing room to the machine where I just strip off to the waist. Once they’ve drawn out their measurements they do cover over my good side though.
Sparkle I have yet to experience a machine breaking down but I have seen on here that it’s something that does happen regularly. I’ve been told that they’re going to be servicing one of the machines one day next week and I’ll either have to go in next Saturday morning or have a day added to the end of treatment instead
I hope you get started on Monday though, there’s nothing worse than hanging around for treatment.
Talking of which, my session is not until 6.20 this eve so I’ll get stuck in all the traffic trying to get there
Nebsminty
the gown is made of a soft thick navy material. It has a full length zip up the front and each shoulder seam has Velcro fasteners. I feel well covered whilst sitting in the waiting room. Once I have laid down they undo the Velcro fasteners and the zip to position me and then they are able to partially cover up my good side. Once treatment is finished they just fasten me back up and I then get changed. The gown stays with me for the duration of the treatment and I can wash it if I want to.
Judith, I asked the radiographer only yesterday how many women have to do the breath holding. She replied that it was a subject that she was going to be discussing with others at a conference next month!
She said that it was currently only for women who have had tumours in the lower/inner quadrant of the left breast. When I said mine had been in the lower - outer - quadrant, then she said ‘oh they must have changed their criteria already. I’m pleased about that’. Apparently it is something that they are thinking of offering up to all women with tumours in the left breast.
I don’t think it would add to the costs of the treatment, they might just have to take a couple more planning images and they make more pen marks on you when they’re about to do the treatment.
I have to hold my breath twice in both of the 2 positions they zap me from. Anything from a count to 10 to a count to 20
AG, that makes perfect sense to feel protected whilst you’re sitting half naked in a waiting room. I’m lucky that you stay fully clothed until your name is called. Then you go into an individual changing room to strip off your top half and put on a gown before exiting via a separate door into an area that leads to the machine
I was told my planning would be done with and without holding my breath. As I was able to hold my breath with ease they only planned with me holding it. Don’t think there is much difference to cost just a little extra time. I believe they only do the breathing technique on one machine here so that they don’t have to train too many radiographers. My tumour was also quite deep. Anything that helps to protect me I will try!
Thanks for all the info lovely ladies, mine is right sided so I’m guessing I won’t have to do the breath holding bit! Xx
I had my rads last June and left sided below the nipple. We weren’t offered ‘breath holding’ at the hospital I went to. Wish I had known about it when I had my rads.
AG, I love the idea of modesty gowns, it made me laugh - I went to Leicester Royal and wasn’t offered a gown for radiotherapy. You just went into the treatment room and there was a chair where you stripped to the waist and walked over to the treatment table lol.
Jaye x
Hi Jaye. I’ll be having my rads at LRI. Had great treatment at Glenfields and lovely surgeon but found the onc dept at LRI a very depressing experience! How did you find it?
Hi Fluffs
Yes I found Glenfield great and a lovely surgeon.
Shame we have to go to LRI for radiotherapy - a different experience.
Parking is a stressful experience all the queueing but no real complaints about the treatment. I had quite a nice oncologist, think he was Spanish.
Only had one day when I was there for about 3 hours as I had to wait for a clinic appointment and it was a day when the queue for the car park was too long and I found a parking slot a few roads away, only to find you couldn’t park there after 4pm and I arrived back at 4.15pm to a parking ticket.
Only downside of Glenfield is that they do follow up mammograms 18 months after op and reading the forum, most seem to get yearly check ups.
I walked out of hospital after last rad appointment, It would have been nice to have a final consultation with someone, even a rad nurse, it just felt strange.
It’s now 13 months since my op and not sure when I get a check up appointment, I imagine it will probably be at the 18 month mark, about September this year.
Don’t get me wrong, the treatment I received was good, but just feel it left me wondering when they are going to follow up with check ups.
Jaye x
Morning ladies
Had my 2nd session yesterday evening. Great time to go. Traffic was minimal and able to park easily. There was only one other person in the waiting room it was so peaceful. Came out feeling fine. We called at a friends for a cuppa on the way home. By the time we got in my breast was pink and swollen. Is this normal after only 2 sessions? Felt quite off as well. Woke up this morning and everything has settled back down again.
Quite surprised you had no follow up appointment Jaye. I have clinic on day 5 and also on my last day. I also will have a check up a few weeks after rads have finished. The day I was given my post op results in March I was given the appointment for my first mammogram March 2016. Why don’t you ring your BCN to see if you should have had a check up?
Hi Jaye
Yep I’m not expecting a great experience for the rads at LRI! Will be having to use the hospital transport system too, so think it may be a tiring time! Parking is awful there. We live in Uppingham, so bit of a trek. Still i’m grateful for the excellent treatment I’ve received so far. I have Grade 3 invasive, no nodes, Had two WLEs and am waiting for last one to heal before starting rads. I’m surprised they only have 18 month mammo after BC. As you say, a year seems to be the norm elsewhere. Any tips for getting thro the rads there?! X
Hope everyone having a relaxing day off, what a relief not having to travel for two days ?
Does anyone else feel like they are apologising for not having chemo? I sometimes think people think you aren’t really that poorly if you’re ‘only’ doing radiotherapy. I called in at work yesterday and told everyone that I’m ok. Why do we lie? Mind I don’t think people really want to know how you are. I texted my buddy later and confessed that I was s.h.**e in mind and body. She said she knew, so I think we only kidding the ones who really don’t know us. Nice to have good buddies tho. Nice and sunny out, hope it keeps up. Sending hugs to everyone xxxx ?
Hi AG
Yes I’m thinking of ringing BCN to see when I get a check up.
Make sure you drink plenty of water, I found that helped with the feeling strange after treatment. I drank water in the waiting room and then a small bottle as soon as I came out, it seems to help as rads dehydrate you.
I started using cream a couple of weeks before I started and was lucky I didn’t get burnt too badly.
All the best
Jaye x
Hi Fuffs
Sorry to hear you had to have a second WLE, I was lucky to get away with one and my nodes were clear too.
You’ve got quite a bit of travelling to do, but it probably won’t be too bad if you’re using transport,
When do you start, do you know?
It is a very busy hospital but there was only two days when I had to wait more than half an hour so it wasn’t too bad. They have 4 or 5 machines so sometimes swap you over if one is running late or broken.
Make sure you cream once you’ve healed from your op, they recommend aqueous cream.
Best wishes
Jaye x
Hi all
Thank you all so much for just sharing the ‘day to day’ stuff of this process. I feel so much better after reading all your replies. I can agree with so much that is said although I have not yet started rads, was told it ‘had’ to start by 2 May (to meet targets, nothing clinical!) so expecting a call next week. I am still working full time in our very busy village shop and peoples response to our situation has been amazing. However, it is tiring to keep explaining what has happened and what is about to happen. Yes I do feel that I have to explain why I am not having chemo…it’s not a simple reason - I have Coronary Heart Disease following a heart attack so am exceptionally grateful that tumour was on right breast, I also had Acute Cholecystitis, both conditions have left me too vulnerable to have chemo. So the decision to ‘decline’ was bit of a no brainer and my oncologist is very grateful that I have not insisted on putting us all through the process. As you can imagine this has left my head in a bit of a mess wondering all the what if’s of not having part of the treatment and what this might mean for the future.
On the upside I seem to have a most wonderful hospital in Torbay who have in all my conditions excelled at patient care including free, easy parking for each department that you are undergoing treatment through. For the Breast Care Unit and Oncology you just park and nip in for a pass to cover your visit. I know already that I will have an appointment with my Oncologist following rads to review me. He has included me in all letters to other professionals not that I am completely au fait with the jargon and to be honest researching some of the pathology report rather alarmed me in terms of prognosis.
I do apologise for this very long post but feel that it is important to share some of the postives of the NHS process so that you might be able to share ideas with your hospitals if things are not as good as they could be. One idea I will be sharing is the ‘modesty gown’ as I simply had to strip off in front of 4 people in the CT scanner room for my planning session - I know I have probably shared my breasts with most of Devon this past two months but living and working in a small community where everyone says they shop in my shop makes me feel slightly awkward to say the least!
Has anyone else noticed that people now talk to their breasts when asking how you are?
Lots of hugs to everyone.
Katie
x