What would you tell Radiation Therapy students?

HarleyB

I've been asked to speak to radiation therapy students next week about the patient perspective of radiation treatment. The person who normally does this question and answer session is unavailable so I have been asked to step in.

My therapy was 7 years ago and the main thing I remember was how isolated I felt when it finished. I had seven months of treatment including surgery, chemo and then radiation and suddenly one day it was all over. Yay there was a big celebration but I went from daily visits for radiation to nothing... Of course the skin reaction to radiation is worse in the week after treatment so that was when I really needed some type of reassurance that it was ok and yet all I had was a follow up appointment in 6 weeks time!

What else should I be telling them?

Thanks for any comments.

Melbo

I am currently doing radiation and I hate it much more than I thought I would. There is always something wonky with my body position and breath holds so they end up doing films every day to make sure I’m in the correct position. The techs don’t know why it’s different every day but they rarely explain to me what’s going on or what the problem is, it’s just clear there is a problem and they have to fix it. It makes me feel terrible even though rationally I know it’s not my fault. My techs are very nice and reassure me when I say something, but it would be much better for me if they told me what they were doing and why

ajminn3

I had a lot of radiation students during my radiation treatment. I don't know if it's the training/guidance my clinic gave them, but I appreciated when they introduced themselves, explained they were a students, and many said, “thank you for letting me have this experience and be part of you treatment team so I can learn." That simple thank you goes a loooong way when you're feeling exposed and vulnerable topless on a table! My other piece of advice is if they are doing a bolus (I had both a damp towel bolus and a targeted gel bolus at the end) to warm up the water they use to dampen the towel! The only time I had a cold wet towel put on me was when it was the students job to prep the bolus and an ice cold towel is not fun.

I also really appreciated that my radiation team explained what they were doing. I also appreciated when the male staff explained things, told me were they would be touching/placing stickers, etc./then announced or asked permission before touching. If there was a time I would be laying waiting for something and unable to move my arms, my team always made sure they would cover me with a sheet so I didn’t lay there cold and exposed. I felt they were really mindful of me. While I have never been assaulted, I imagine individuals that have can be very triggered by the experience of radiation.

FindingOptimism

I would highlight to them that, although this is a regular job for them, most patients are new to this and it is intimidating. Not only are you being exposed to the radiation but you are doing so without some ofyour clothes on. Anything they can do to make patients more comfortable with the process should be considered. I, personally, hated, and still hate the tattoos and I vividly recall my technician crowing about how small she makes them. It didn’t help.

YesIamaDragon

My radiation therapists were LOVELY, truly about the best of all the people I encountered. They all introduced themselves, asked me if I wanted a warm blanket each time, told me what was going on every single step of the way. The initial CT with making the form and tattooing was the hardest because it was so long and cold and I felt so exposed, and I didn't know the therapists yet. Near the end though the emotional and physical fatigue was so hard, and one day I just started to cry on the table, and the therapists were just so quietly understanding. But the therapists also were commenting on the fact that my hair was growing back in that period.

And yes, it was SUCH an adjustment to be done with the daily contact! My Dh suggested to smooth the transition the next day I go into work early go into a cold conference room, strip from the waist up and lie on my back on the cold table with my arms up. LOL.

So I guess just acknowledging what is going on, how hard it is emotionally on their patients in so many ways, and being human.

ElaineTherese

My radiation techs were really nice, but I found radiation to be somewhat dehumanizing. I felt like a piece of meat, lying on a table, which was poked and prodded until I was exactly in the right position. I'd also just come out of chemo which can be a social event (would gossip with a friend, fellow patients, and the nurses during infusion). Let's just say that I have fonder memories of chemo than I do of radiation.

HarleyB

Thankyou so much for all these helpful responses. It's given me a lot to talk about.

I can relate to everything that has been mentioned. It's amazing how much I had forgotten about my radiation treatment after all these years - I suppose that's good? Or maybe it's just the chemo brain? LOL!

YesIamaDragon

Oh, I forgot! They had all put photos of their pets (and a few patients added their own) on the ceiling above the machine! So while lying there exposed at least there were cute animals and we could chat about them.

DD17

I would mention that women should have the option to talk about proton radiation for breast cancer, even if the center doesn't offer protons.

I was successfully treated with proton radiation in 2018 at the Maryland Proton Treatment Center.

I would also mention that communicating with patients by sitting down, eye to eye and listening to the patients concerns is one of the best gifts as a physician.

Sometimes patients have odd side effects from radiation, my doctor never made me feel bad for asking about them.

My Radiation Oncologist is the best communicator, I'm so grateful for his care.

Good luck!

edj3

Agree with so much of what's already been posted; I'm going to pile on to DD17's post. We do have side effects from radiation and being told that what we are experiencing "doesn't happen" or "isn't really (whatever we've said it is)" are not helpful at all.

Our experiences are valid and listening to us is critical.

DeniseML

I am currently undergoing radiation therapy also & would like to offer just a couple of more suggestions for your lecture. More than anything, explaining staffing going forward at the initial consult is imperative ! I spoke with the tech and she took me through the treatment room, positioning, timing, scheduling .

Unfortunately she did not talk about staffing patterns, and that I would be also be encountering male techs depending on day of week. I was totally taken-back when I showed up for CT simulation to find out that the male tech was doing it, including tatooing, and he was the only one there ( probably because I was fit in at lunch time. Also have had multiple different techs, some traveling from another facility to help out, male as well. I agree with others that this experience makes you feel very vulnerable. Just discussing the possibility of male techs, new techs on occasion would have allowed me to prepare and not feel so exposed and vulnerable. All techs have been very professional. Loss of control is very difficult ! the more information given to the patient the better we can prepare ourselves for the loss of control during radiotherapy.

ElaineTherese

RE: Male techs -- Before we began the radiation sessions, the head tech asked me if I minded male techs. I said "No," because by that point, so many people had touched my body that I was beyond caring. But, I appreciated her asking about it. I could see how not everyone might feel comfortable with male techs.

YesIamaDragon

Although, edj and DD17, the OP asked about radiation therapy students, not radiation oncology trainees. Really the ROs should be having these conversations with us all the way through.

NotAsCalmAsILook

great info above!

I’d like to add this - I can’t see who comes into or out of the room while I’m lying onto the table. So, in addition to introductions, announcing yourself (or your coworker) as they enter the room where I’m laying half naked would be great!

Also - a reminder not to take things personally... we’re going through a lot. Sometimes our frustrations get the best of us. Or our history. Offer us some grace.

HarleyB

Thanks everyone for the suggestions. The lecture went very well and I got quite a few interesting questions and comments from the students.

I also got a LOT of questions from the professor who had asked me to do the lecture. He had previously worked at the clinic where I was treated although he was not involved in my treatment as I already knew him. He was surprised that I didn't realise there would be several different therapists during my treatment. He had never considered that patients would not know this and that it would bother some people.

illimae

Great comments and mine are very similar.

1. We are people, not tables. Be mindful of where you place objects (tape, stickers, markers) and where to grab when retrieving those items.

2. Talk to us. If you want us to move, explain and ask or offer to help, do not simply jerk us around. Some people are sensitive to this and some are in legitimate pain.

3. Be courteous of our privacy. There isn’t much of it in that scenario but do not leave us exposed, especially if others are in and out of the room. Remember that we are having some of the worst days of our lives, respect is required and appreciated.

kksmom3

I had wonderful techs but I didn't go out of my way to be super friendly with them, they tried. I was quieter than I normally am, I'm usually pretty outgoing. Now 2 years later, I feel a little bad about it. It just took all my emotional bandwidth to endure radiation treatment everyday. They truly were very kind and nice ladies, it's just that I wasn't into small talk. I would like to tell students not to take it personally, that some of us, probably most of us, are going thru an absolutely horrible mental battle as well as physical. I'm so thankful they were kind to me.

Betrayal

- I hated the gowns they provided since they were skimpy in length, closed in the front and clearly identified us as being BC patients. They were also scratchy on very tender skin and this needs to be discussed by the department.

- The ceiling in the room was covered with cherry blossoms and to this day, the sight of cherry blossoms triggers negative memories of that traumatic experience.

- Sometimes they were so busy talking to each other in the observation booth that they did not notice when I became fully exposed and I had to yell to get their attention.

- The room was cool so they did offer a warm blanket and for that I was thankful.

- The everchanging staff of technologists was unsettling since they did not always introduce themselves and yet felt they could touch me at will. I did snap at one or two about that and have no regrets since I felt objectified by their attitude. I am not a piece of meat!

- Sometimes there were issues with the machine malfunctioning and long waits with no explanation offered which just increased my anxiety level. I did breath holds and there were times when I was holding my breath for longer than expected and I was unable to tell them I needed desperately to breathe. Again no explanation was offered even when I asked if there was an issue. We deserve to know if there is an issue with our treatments and/or the equipment.