My MSK Precise / SBRT Journey -- Simu... - Prostate Cancer N...

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My MSK Precise / SBRT Journey -- Simulation

Hope4Happiness profile image
20 Replies

I had my simulation procedure at MSK in NYC yesterday.

Overall, it was a long day, but much of it was waiting in between the phases of the process.

I had prepped in the morning with the Citrucel, Gas-X tabs, and saline enema, so when I arrived I was ready to roll. The first part involved the CT scan while concurrently having a mold made of my pelvic region. It involved lying on my back on a hard surface for a while and the warm mold being placed over my nether regions produced the sensation of a warm blanket, so none of this was the least bit uncomfortable.

The four skin markers / "tattoos" were next -- they were placed on each of my hips, one about two inches about my navel, and one down in the public area. Because these markers are about the size of a spec, it just feels like being poked by a very small needle for a second four times. The one down in the public area was, of course, the most sensitive, but some of that might have been psychological.

I was scheduled next for an MRI, and this is where the most delay occurred. There was an unscheduled/emergency patient that needed to use the room, so the schedule got thrown off a bit. This part is a bit tricky because you must have the MRI with a full bladder. You swig down a cup of water, wait about 15 minutes, and then go in. You are then in the machine for about 25 minutes.

Because this delay happened after I already drank down the cup of water, it was too risky to try and hold it for the length of time with a now 40-minute delay. I ended up having to let another patient take my place in line so I could urinate and then drink down the water again closer to my scheduled time.

The only problem I had with the MRI is that a couple of the images were failing due to a couple of titanium screws I have in my hip from a skateboarding injury. The titanium screws are not magnetic, of course, so they don't disrupt the MRI machine at all -- it seems they were just preventing some of the images to process.

This meant that I then had to go back for some more images in the CT machine. That additional process was only about 10 minutes long, but as I was being added to the schedule at the last moment, I had about another 15-minute wait before I could get in there. Fortunately, though, I was able to hold my urine for that length of time, so there was another long delay!

Overall, the experience was what I expected, and even with the delays, I was there for about a total of four hours. If I had to point out any discomfort it would be the loud as hell MRI machine while I was in it for 25 minutes -- the earplugs and muffs helped, but it was still blaring!

I can say enough positive comments about the MSK staff -- Man, these folks are so professional, friendly, and comforting. All these folks are seeing so many patients a day (never mind in a week), and they all still made you feel like you were the "special" patient.

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Hope4Happiness
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20 Replies
redonthehead profile image
redonthehead

Sounds like the fun I went through! Except a question - It's my understanding SBRT requires more accurate tracking than the tattoos used in standard 44 fraction EBRT. Does their process use MRI tracking while getting treated? or did they also put fiducials in your prostate? In other words - why the tattoos?

Also curious about what GY you are getting and what margins they are using.

Spyder54 profile image
Spyder54 in reply to redonthehead

They line up laser beams on the ceiling with each tattoo. I had 10 tattoo’s because of T5 + Prostate. They lock you in with custom body cast so less than 1mm of movement. Yes they use MRI and CT before and during each procedure. Yes, I had 3 fiducials implanted in my prostate (not fun, not terrible-they offered me 2 Lorezapam which took away anxiety). My understanding is the tattoos have a metallic substance that is picked up with CT, and they can measure from fiducials to tattoo vs the outer perimeter of prostate at all of those angles, and keep a 3mm margin to avoid overspray to any vitals.

Scooter22 profile image
Scooter22

I am on your same schedule at Duke. Had fiducials and space oar placed 2 days ago. 1st rad. treatment coming up on the 11th. Good luck to u!

WilsonPickett profile image
WilsonPickett

Thank you very much for the rundown. I too am expecting to wait more than anything else. Guess I’ll have to put some good movies on my phone or bring a book.

TylexGP profile image
TylexGP

Yes I agree the staff was awesome during my simulation. I had multiple MRIs that day due to uncooperative gas despit following the instructions carefully. Despite this I never felt I was inconveniencing them.

NYC_talker profile image
NYC_talker

Thank you. I will be going through the exact same procedure at MSK at at some point. I have one question: Is your head completely out the MRI machine? I've had varying experiences with this. Thanks again.

Hope4Happiness profile image
Hope4Happiness in reply to NYC_talker

The top of my head was out of the MRI machine. When I looked straight ahead, I was looking at the inside of the MRI machine. When I looked up toward the top of my head, I could see out the end of the machine.

NYC_talker profile image
NYC_talker in reply to Hope4Happiness

Thank you. I’m claustrophobic and going for first MRI today actually. So hoping I’ll d able to handle.

Hope4Happiness profile image
Hope4Happiness in reply to NYC_talker

Ensure you choose very relaxing music to listen to during the MRI -- that will help!

NYC_talker profile image
NYC_talker in reply to Hope4Happiness

Thanks a lot! I may need sedative too.

jazzy53 profile image
jazzy53 in reply to NYC_talker

If you're claustrophobic, keep your eyes closed for the duration of the imaging. Resist the urge to open them.

Spyder54 profile image
Spyder54 in reply to NYC_talker

Ask for Lorazepam next time and a big bore machine. Much easier

Spyder54 profile image
Spyder54 in reply to NYC_talker

For me, I went feet first, with my head just at outer edge of machine. Much easier than being fully in with your nose pressed against top of tube. Also, they have a large bore machine, but was busy and I couldnt wait for next opening in schedule.

NYC_talker profile image
NYC_talker in reply to Spyder54

Thanks. Yes, that was 5 months ago when I posted that. And I've had two MRI's now, one pre-treatment, the other right after treatment. And they were a breeze, largely because yes, my head was not fully in. Just look back and out and you're fine. I do believe both were large bore too.

Neversaydie profile image
Neversaydie

I'm about to start my treatment next month, and this is VERY helpful. I'll post my experience as well, since I'm also at MSK. I will be getting the SBRT and they have me scheduled for the implantation of the SpacerOAR and gold fiducial markers on 4/13. Then the simulation on 4/20. Can you tell me how long after the simulation was your first treatment? I saw that it could be up to two weeks after the simulation.

Hope4Happiness profile image
Hope4Happiness in reply to Neversaydie

Hey there! Time from simulation to my first treatment was a week and a half.

Neversaydie profile image
Neversaydie in reply to Hope4Happiness

Thanks!

Spyder54 profile image
Spyder54

Did my 5 SBRT to Prostate and 3 to T5 in spine in Jan. Rang the Bell Jan 20, 2022. Dr Sean McBride. All good so far 60 days out. Msg me w any questions. Flew up from Tampa. Stayed on East River at Bentley. Short 5 block walk. Many good restaurants, Markets, and Deli’s within a few blocks. Taxis $65 flat from airports. Cheaper than Uber.

Neversaydie profile image
Neversaydie in reply to Spyder54

Hi Spyder54; thanks for the note. I live just north of the city and will be driving down for the 5 treatments. I'm guessing the MSKCC parking garage will be where I park. I'm glad to hear you're doing well! I wish I had a site like this 20 years ago when I was treated for testicular cancer, which was treated with chemo, which was much worse!

Spyder54 profile image
Spyder54 in reply to Neversaydie

Best of luck! Wow, testicular cancer 20 yrs ago. Never say die…indeed!Did not use garage. Walked.

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