What to expect at simulation and how will I feel afterwards?

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PurpleCat
PurpleCat Member Posts: 358

My simulation is next week, with treatments starting shortly after that. What happens during the simulation? I've heard various things: it takes an hour, it takes 2 1/2 hours, it's a big deal emotionally but not physically, they do a tattoo, they make a cast of the breast, you practice the breathing technique ... Just not sure what to expect, and don't want to call the doctor with questions about every little thing.

I'm planning to go to work immediately afterwards, because I'm scheduled to be there and because my workplace has generally been a good place to be emotionally through all of this, as opposed to lying at home curled up in a ball with my phone and scrolling through cancer information. But maybe it's going to be a big emotional hit and I'd be better off just taking the day off?

I think it's going to feel like "FINALLY I am getting started on treatment and can start the countdown to it being in the past." I've known for 2 months that radiation was coming, and haven't known when it would start, and people keep asking me about it, and I'm so tired of saying "Soon ... " So I think I can keep that mindset through the appointment, and then when I get to work I can FINALLY tell my boss and coworkers what times I will be missing and then they can start to adjust their own workloads accordingly.

Anyone who's been there, what do you think?




Comments

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    You lay there for as long as it takes, which varies from one treatment center to another. Some do placement molds, some don't. Some do tattoos, some do Sharpie marks. It's just a bit tedious while all the measurements and scans are going on, but certainly not painful or anything you need to prepare for - or panic over.

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    I guess i was there 2 hours or so, alot of which time i wasn't doing anything, the tech was moving around, making adjustments, checking this and that. I was placed in positions,arm raised overhead, tattooed, only a tiny blue dot, in 4 different areas, forming a diamond shape. That will make the treatments go super fast, they just have too line up the dots with the beam. The only reason it hurt me is because I had axillary cording after my surgery, had tight bands ,or cords under my arm all the way down my arm.Made it painful to stay in position for a long time. Arm and hand got numb. Other than that, no big deal. I went to the gym after. Btw, the daily treatments are fast, painless, you're on your way in 15 min. I had very little problem with radiation, just "sunburn" and some scabbing, rawness on collarbone where I had extra zaps Good luck! It's not bad

  • Ingerp
    Ingerp Member Posts: 2,624
    edited November 2018

    I want to say my simulations were more like half an hour. Some scans, a few pinprick tattoos (which I swear I wouldn’t be able to find today), some pictures, that’s about it. Is it your left side? That’s the only one you might have to hold your breath for. I was a little nervous about that but it turned out it wasn’t a big deal at all. The longest zaps were about 17-18 seconds and if you slip out of position, the machine will automatically turn off. My skin held up pretty well both times and I had minimal fatigue. Chances are you’ll breeze right through

  • GreenHarbor
    GreenHarbor Member Posts: 265
    edited November 2018

    Hi PurpleCat! My mapping appointment was about an hour. My tumor was on the left side, near but not on the chest wall. I had a CT scan face up, with my arms overhead. They made a soft mold to keep my arms in the right position. Then they did the same thing with me face down. They attached a ramp to the CT scan table. It had a spot for my breast to dangle down. The gravity pulled everything away from my chest wall, making it easier to zap just the tumor site. My arms were overhead again, gripping plastic rods. It was awkward climbing on and off, but doable. My arms and shoulders were a little numb and tingly right after, but it went away quickly. I have tattoos front and back. The tech put a drop of ink on my skin, then gave it a quick poke with a sharp thingy (like they use to prick your finger for a blood test). They’re TINY; I have a hard time seeing them even thought I know exactly where they are. The RO said not every facility is set up for face down treatments. I ended up having 15 regular treatments face down, plus 5 boosts face up. I also got my treatment schedule at the mapping appointment. I told the treatment tech that I wanted to get my treatments before work. They were able to accommodate me, with 2 random appointments at other times. CaliKelly is right- the mapping took longer than the actual treatments. The techs were all lovely, and really good about explaining everything. I didn’t find the mapping appointment difficult emotionally at all. I wasn’t working that day, but could easily have gone in if I had to. Good luck!

  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2018

    I don't remember how long my simulation was...but I don't think it was all that long. We had to wait for the CT machine because they were a bit behind. But once we were in there, she positioned me, did some quick scans, then I got my tattoos. It wasn't a big deal. I went to work afterwards. I feel like at that point, it's not anymore emotional than what you've already gone through. I think the first treatment was harder.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    My tattoos hurt a bit while getting them, but they were quick little pricks and then gone. I drove myself to rad tx, which was 45 min one way. The preparation, "set-up" appt was a non-event and so were the rad txs themselves. As someone else posted above, I used all the creams/ointments given to me by my rad nurse and oncologist, and had just some "sunburn" type marks and that was it. No peeling or any wounds.

    After 5 months of chemo it was actually a relief to go for 15 min treatments and then be able to drive home or go do other activities.

    Good luck!

    Claire in AZ

  • ksusan
    ksusan Member Posts: 4,505
    edited November 2018

    A lot of people feel vulnerable during the simulation and subsequent treatments. Prone and supine positions can bring up emotion (one of the reasons some analysts have you lie on the couch rather than sit), there aren't other patients in the room, there's not a lot of visual distraction, and the machinery looks like Darth Vader's Kitchenaid. You're by yourself in the room while they do scans, so it can feel objectifying. The room may be chilly, and a tech will be positioning you in a way that can feel exposed and impersonal. Knowing this,

    • Introduce yourself to the techs and learn their names
    • Reframe the experience (I like the idea of telling yourself that you're finally getting going)
    • Turn the breathing requests into a meditative activity
    • Use positive affirmations and imagery--couldn't hurt, and will at least help you be calm
    • If the techs play music in the room, enjoy the irony of the lyrics that will inevitably come up even with a random playlist:
      • O, o o, I'm on fire
      • This girl is on fire
      • There's a little black spot on the sun today
      • Burning down the house
      • Turn me loose tonight, I'm radioactive
      • I fell into a burning ring of fire
      • Etc.
  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited November 2018

    I found chemo physically hard, and I found radiation mentally hard...

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    The setup was easy and kind of interesting. The actual rads are tedious and mentally difficult, like an extreme version of the movie Groundhog Day.

  • PurpleCat
    PurpleCat Member Posts: 358
    edited November 2018

    Thanks, all. Sounds like it can't be any worse than things I've already gone through, and I really do think it will feel good to FINALLY be getting on with treatment.

    ksusan, your playlist cracks me up! When I went for my MRI they asked for my favorite Pandora station to play through the headphones. They got it set up, and the very first segment was one of those scary drug commercials, with the ominous sounding music and "Side effect may include nausea, vomiting ... " yeah, not really what you want to be thinking about when you've just been warned that you might start feeling nauseated but have to just breathe through it.

    Alice - groundhog day, haha!



  • AMLmom51
    AMLmom51 Member Posts: 40
    edited November 2018

    For those that had chemo before radiation, how soon after chemo ended did radiation start? Was your radiation oncologist appointment and/or simulation before chemo ended, or what was the timeframes after chemo?

  • Wised
    Wised Member Posts: 351
    edited November 2018

    Purple cat, the only thing I'd like to add to the above posts is that the cast that my RO is having made for me is of my back and arms so that I will be in exactly the same position every time I go in. I did have to hold my breath in the cat scan so they could map the beams, but it was for 10 seconds. (My tumor was on the left side) I did feel vulnerable, which I hate, but I like and trust my RO, so it works out. I just so want to be done!

  • ksusan
    ksusan Member Posts: 4,505
    edited November 2018

    My simulation was about a month after the last chemo, and I think I started around 10 days later?

  • AMLmom51
    AMLmom51 Member Posts: 40
    edited November 2018

    Ksusan, thanks for the info. I guess I'm hoping to get as much behind me as possible in 2018. I also planned a big vacation for March, which was planned a month before I was diagnosed. Hopefully I'll get my port removed before radiation begins.

    I love the playlist too!

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