Hi all,
It’s been a while since I posted, I had a right lumpectomy and mammoplasty and a reduction in left breast in July. Sentinel node was negative. Onco dx revealed I would not benefit from chemo. Next step is radiation followed by 5 years of an aromatase inhibitor. My issue is what happened at my planning appointment and “dry run” appointment yesterday. I became claustrophobic during the planning appointment when the camera lingered over my head. I asked the techs to move the table out and they did. I didn’t realize I wasn’t supposed to move so I picked my head up to talk with the techs. One of them yelled at me saying “you can’t move! Now we have to start over!” I took an attitude saying she should have explained more. We then compromised and she agreed to move the table as soon as the need for camera was through.she somewhat redeemed herself by saying she should have looked at my chart. She said she documented everything including something they used under my neck for support. Two weeks later, I went for my “dry run” appointment. It was a whole set of new faces and they couldn’t get my neck comfortable but stated I couldn’t have a towel underneath because it would change my documented position. I managed to stay still for whatever they did but proceeded to say I needed to stay in position until the doctor (apparently in the building elsewhere) could ok everything. I waited a few more minutes and then started to panic because I was so uncomfortable and felt like I could no longer breathe laying down. I said into the speaker “I need to sit up” and got the same voice stating we were waiting on the doctor. I waited one more minute and then sat myself up causing the tech to run in in a panic because she thought I was going to jump off the high table (which I wasn’t). I just started to cry because up to this point, I was able to get through so many uncomfortable procedures (multiple biopsies, wires for surgery etc) without issue. The tech then tried to reassure me but I didn’t really get it. I understand they’re just doing what their trained to do. I cried in the parking lot before going on to work. I’m now having anticipatory anxiety about starting radiotherapy on Tuesday and cannot even enjoy the long weekend. Should I ask to speak to my radiation oncologist? Has anyone else had a similar experience?
Tryingtobebrave
Hello @tryingtobebrave1
I’m so sorry you had such a horrible experience at your planning appointment: it sounds like maybe the technicians were perhaps not as experienced as they may have been, at the very least they should not have spoken to you in that way. Their training really should include how to speak to all patients
I can only really comment from my own radiotherapy experience, in that my actual sessions were very different from the planning appointment in that they were much shorter than the planning appointment and the “machine” is very different from the scanner used as part of the planning appointment. Personally I also found the radio therapists very friendly and kind: except on one of my 15 sessions I had a less experienced therapist who wasn’t quite as good as the others and I gave a little bit of feedback to one of the more friendly ones.
Wishing you all the best for your sessions
AM xxx
Hi, sorry to hear how you are feeling. I would certainly speak to the radiotherapists before each session and advise them of your concerns. I was told if I needed to speak during the treatment, they would hear me through the intercom. I know you said your neck was uncomfortable. The positioning is very exact so by putting something under your neck would change this. It might be worth speaking to someone before your first session and see what they say. If not, maybe too time consuming, but could they do the planning ct again with your neck supported. They might not be too keen though.
I dont know if I have been too helfpul or not. Hope it goes okay xx
Hi try not to worry too much… the positioning is so much longer than the treatment. With the 5 day course, having a larger amount each time it’s only around 4 to 5 breath holds for 30-40 seconds each time with a short recovery in between. The machine instantly stops if the breath gets too shallow. I just closed my eyes as soon as the bar was in the middle of the screen and opened them when it stopped… good luck you’ll do it x
This was my view during radiotherapy and I just concentrated on the beautiful scene and thought of summer which was just around the corner. It was all over very quickly and wasn’t at all uncomfortable until my nose started itching
I can honestly say there was nothing to it so please don’t stress yourself, it will be over before you know it. I hope you have as pretty a ceiling as I had to concentrate on. Thinking of you and sending positive strength xx
I’m sorry that you had such an unpleasant experience and that the importance of staying still / when to stay still / for how long wasn’t explained to you properly . I think you’ve been somewhat unlucky as my experience was pretty positive and I know others have felt the same.
There was no doctor involved in lining me up it was Radiographers only and they were different every day . Also I had a planning appointment then 2 weeks later onto the therapy - no dry run and I can’t help wondering if having an extra preparatory appointment might have made you more nervous.
I took charge from the get go because I had a rotator cuff injury and refused to let anyone else touch my arms or shoulders . We did have to compromise slightly with my head/ arm position because they basically said they had adjusted the table as far as it would go but I was able to maintain the position for planning with just a little discomfort. I took some mild pain relief before going for the first treatment but I didn’t need it because as mentioned above it was all over very quickly ( also my shoulder had improved ) .
I don’t know if you’ve been given a number to ring at all but if so it might be worth you doing that tomorrow and outlining your concerns about the change in your position etc . at the very least it may let them know that they might need to spend a bit more time going over things with you on Tuesday .
You mentioned having tolerated so many procedures up to now and sometimes it’s just one thing too many . When I had an MRI on my neck quite a few years ago I was given a button to press to alert the Radiographer if I was in pain so that I wouldn’t be moving while they were scanning - I don’t know if that’s an option . Xx
Hi JoanneN,
Thank you so much for taking the time to respond. I will definitely see if I can speak to someone. It was good that you took charge. Had I known I was going to be in same position as planning, I definitely would have spoken up. I don’t think there’s a button but I can communicate via the speaker. Thanks again! 
Hi nannabee,
Thank you so much for sending positive thoughts. That is a beautiful scene to nicely distract. Unfortunately, my radiation room is bland and “sterile” looking lol- perhaps I can conjure up my own scenery in my mind. Thanks again for your support!
Hi adoptedmanc,
Thank u for your quick response. It is possible they were less experienced. It’s helping me to learn from you that planning and dry run appointments are longer. I will hold on to that. Thanks again,
Hi tilly1231,
Thank u so much for responding to me. It’s so helpful to know you all are so supportive and available. Sharing your experience is a source of comfort.
Hi poorlyboob,
You have definitely helped and I thank u so much for your timely response. Not sure if they would repeat the planning but there is a more streamlined process? I will ask.
tryingtobebrave1. I’m so sorry to hear of your experience, I think you were very unlucky. Everything should have been explained to you in detail, with kindness & consideration, it’s frightening enough without being spoken to like that. The actual radiotherapy sessions are very short once they have you in the correct position. I was lucky too & had the beautiful relaxing scenes to watch & state of the art equipment & lovely radiotherapists. I wish you all the best with your treatment.
Remember we are all with you tomorrow and it will be over before you know it. Please let us know how it went and think of something pleasant . xx
Hi @tryingtobebrave1 , just thought I’d say hello from a fellow claustrophobic . I also cried at my planing appointment! They lost my notes and kept me waiting for 2 hours before the session so I was already mildly hysterical when I went in. I hate feeling trapped anywhere and need sedation for MRIs . Just thought I’d re-assure you that the radiotherapy sessions are very different from the planning session , they are are much quicker you are not hemmed in like with CT scanner ,you are only alone in the room for a couple of minutes you do not have to stay still for long .Often you will see the same radiographers each day .
Good luck for tomorrow !!! Jill x
Hi Balchik,
Thank u for validating my feelings and the well wishes and reassurance!
Hi Jill1998,
Thank u so much for reaching out as a fellow claustrophobic, your words are very reassuring!
Hi everyone,
I made it through my first appointment! You guys were right, it was a lot faster than planning and my “dry run”. I also took a bit of control back by asking if I could get my neck situated first before I put my arm up. So that seemed to help. Thank you so much to all for getting me through my first appointment!
So pleased it went well and great that you got your neck comfy before they moved you. The rest will be so much easier now. Stay strong, you’ve got this xxx
You are welcome and well done you - hope it all continues to go well. Xx
A big ‘well done’ from me. I am sure the rest of your sessions will be fine too.
Best wishes x