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What do you wish you'd asked before starting IMRT?

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Posted 6/10/2013 2:04 AM (GMT 0)
I'm scheduled for my "simulation" appointment Wednesday to take all the measurements and plan out the radiation treatment. As usual, I'm a little anxious about it since it's so critical to determining the success of the therapy.

So many here have experienced IMRT, and I'd really appreciate any advice you might be willing to offer.

I'm trying to put together a list of questions to ask the radiation oncologist while I'm there. I'm having IGRT, and already have the gold target-markers implanted.
Posted 6/10/2013 2:23 AM (GMT 0)
Make sure you ask how much water you are to drink, and when, in advance of each treatment session.

I went through IMRT with a Suprapubic catheter in place, thus having an empty bladder all the time, I was severely burned by the radiation, and my bladder was ruined, and ended up with an Urostomy (stoma) after my bladder was bypassed. Make sure you and the RO are clear on this point, you don't want to end up like me.

david in sc
Posted 6/10/2013 2:56 AM (GMT 0)
I was told to be sure that my diet and daily bowel habits remain the same during RT, as they want things to be in the same place each time. The water torture had to be adjusted a bit, as I was not continent.

I pretty much asked all the questions I've seen mentioned here since then. I'm not sure that I gave some of the answers correct weight.

My IGRT "journey" is linked in my sig.

Posted 6/10/2013 3:14 AM (GMT 0)
Thanks, David. I've read your comments about your injury from radiation, but never understood the cause. The full bladder seems to be key; I've been experimenting with my own "urodynamic" studies, seeing how long it takes for given amounts of water to fill my bladder, and how long I can hold it. Right now, it looks like 12-14 ozs an hour before the appointment should be right, and I can hold that increasingly uncomfortably for about another hour to hour and a half after it first starts to feel full. Since this is my primary therapy, I'm starting out fortunately with fully-intact continence. That's at risk from radiation therapy too, I understand.
Posted 6/10/2013 4:50 AM (GMT 0)
You might ask about missing a treatment... It is actually no big deal and just re-scheduled or picked up, but asking and getting a confirming response beforehand from you oncologist may help to alleviate future panic and stress in you if logistics/travel/sickness screws things up for a day... :-)

pasayten
Posted 6/10/2013 2:08 PM (GMT 0)
Redwing57 -

Re keeping your bladder full enough, we had a pretty good discussion about this last February on "strategies" for doing it:

www.healingwell.com/community/default.aspx?f=35&m=2632923
Posted 6/10/2013 2:14 PM (GMT 0)
There's really not much to it. Try to change your bowel movements to just before your treatment. Also, go with a full bladder. And DON'T move while the machine is on. I had one those sweat bubbles on the end of my nose that was driving me crazy. I slooowley moved my arm up to get it between shots and go reprimanded for that. Also at about the half way point of your treatments…. Don’t trust a fart…
As far as questons go, it's pretty stright forward. I met with the Doctor once a week jus to go over what was done and how I feeling. For me the whole process was very easy.... Only time will tell if it worked.
Good luck, bertb
Posted 6/10/2013 2:17 PM (GMT 0)
IGRT is a bit of an endurance test. The things I wished I would have asked are, well, not much. My medical team did such a great job on briefing me on the procedure, side effects, what to do when I'm having problems, etc. That I never felt like I was missing any critical information.

Hang in there, you'll do just fine.

All the best,
Andrew
Posted 6/10/2013 3:07 PM (GMT 0)
Most of your treatment planning and writing the program that will control the LINAC goes on backstage..Your daily contact will be with a small group of technicians who actually administer your daily dose..These are the people you must establish a rapport with..You will meet with your RO once a week and discuss any issues or problems you may be having. Usually, it's like nothing at all is happening for the first 20 treatments or so...As you approach the end of your treatment, you may notice some urinary frequency and urgency...In my case, that was about it...Your HT is likely to cause more side-effects than the RT....Best of luck to you...
Posted 6/10/2013 8:55 PM (GMT 0)
I would ask if I could bring in my iPod/MP3 player. Although the sessions are exciting at first because of the novelty, they quickly become boring. Like the others said, probably a good idea to ask about how full your bladder should be. I didn't pay much attention to that, but escaped without harm anyway.
Posted 6/10/2013 9:58 PM (GMT 0)
I was on 2 different medications during my 30 dart sessions. One to protect the rectum(Carafate) and the other to increase blood flow to the area, to help with healing(Trental), if your not I would ask them.

As for the water, I was informed it helps stabilize the region, so less organ movement, and helps define the different parts so they are more defined on the computer screen.

I didn't have gold markers, but I would ask them what safeguards are in place if you do move?

Drink water 30 minutes prior so it makes it's way to the bladder
Posted 6/10/2013 10:19 PM (GMT 0)
Redwing57,
In your case I would ask the RO what his plans are for the lymph nodes and SVs--that way you will know! I didn't see my RO until my 44 treatments were done--no need to see him..
Don't plan on having a colonoscopy for a few years after the treatment..I drank about 12 ounces of fluid before each treatment and then has my colon examined about a year later--it broke my radiation protatis open and it's truely miserable--blood/incontinence..
Drink more fluid than what you are told!!!Please.
Posted 6/11/2013 1:55 PM (GMT 0)
I don't believe the water in itself prevents radiation damage. It's rather the treatment plan, dosing , accuracy and delivery that make the difference. If the bladder isn't full, and they treat you anyway, what else is off?

My own guidelines from my treatment;
"Report with a full bladder, 16 ounces of water, consumed 30 minutes before your treatment should be enough.(A full bladder allows a more defined image; your therapist will let you know if have not drunk enough"

They did an quick ultra sound before each treatment to confirm there was sufficient water in the bladder. Nothing about the colon being full or empty, didn't seem to matter with my treatment
Posted 6/11/2013 7:07 PM (GMT 0)
Ditto on asking about the pretreatment water consumption.

I’d forgotten about this, but when they did my preliminary scans and tattooed me they filled my bladder via a catheter prior to the scan. My penis was clamped to keep it all in during the preliminary scans. Great fun! So they were pretty serious about the full bladder thing and, as noted, they mapped me with a full bladder. Prior to each treatment, an ultra sound was done to verify my full bladder. I got bounced once for not being full enough.

The tech’s were great.

Two common SE’s during treatment (they happened to me) can be painful urination (stinging) and urgency/frequency issues. For the stinging/pain thing you can use pyridium. It is now available over the counter. AZO is one brand. I only needed it for two or three days. Might be a good idea to have some on hand.

Don’t suffer through the frequency/urgency/not empting stuff if it gets bad. Mine got bad and the RO prescribed Terazosin (Hytrin) and it worked like a charm, like overnight.

I went to work everyday after my treatments at 6:30 a.m. and I am still convinced that the fatigue is mostly due to stress and that keeping active is the best thing. Though I will admit to the odd afternoon nap in the office!

Best of luck, you’ll do fine…
Posted 6/11/2013 7:32 PM (GMT 0)
If you're doing IGRT with a prostate the water protocol is not as important as it is in say SRT where the prostate is gone. The seeds and tattoos keep things lined up but the water in the bladder does help reduce the radiation dose the bladder receives. They do a quick scan every day and if things are lining up or the bladder doesn't look right, they stop and come talk to you. It's the quality of your technicians that really matters as they are the ones doing the treatment each day.

the other question that comes to my mind is to ask where they keep the large gowns. Seems like my clinic assumed that the average man is 5'6" and weighs about 140 pounds as there was a constant shortage of gowns actually large enough to cover both my front and backsides. Didn't bother me walking down the hall with my rear hanging out but it seemed to bother the staff.

Andrew
Posted 6/11/2013 10:30 PM (GMT 0)
Yes water alone does not prevent radiation damage, 3 year later we are plaqued with bladder tumors from a fried up bladder. You cannot make up for sloppy tecs setting up the machine. They call it systitus and every usiation is very painful. Choose your treatment very carefully.
Posted 6/12/2013 12:05 AM (GMT 0)
Water was very important in my very high intensity treatment (8 Gy each) to keep the bladder weighted down and the prostate under it very still and pressed in place against the rectal wall. The treatment plan was based on that. In my case, the interfractional motion was tracked with tattoos, twin cone beam CTs and lasers that adjusted the bench, and intrafractional motion was tracked by stereo-X-rays sighting my fiducials. The whole machine stops if there is any movement. With that hypofractionated intensity, sub-millimeter accuracy is critical.

I think that knowing the urinary and rectal SEs that can occur is a good thing so one is not surprised by say, a little blood here or there, or getting up a few times at night.

I think taking daily Aleve or Celebrex helps prevent and reduce inflammation.
Posted 6/12/2013 1:10 AM (GMT 0)
In retrospect, I wished I had asked more about what my "plan" was. Lymph nodes, SVs, dosage, etc. I had an earlier conversation about that with my RO, but there was a gap until I started IMRT (since I had HDR brachy in between) and I never got to re-visit those issues until after I was underway. Given how much of a leap of faith there is to the fact that they are doing this properly, anything that would increase my confidence would have been welcome.
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