Advise on next treatment and side affects

Guy, wow an hour and half drive. Two things, one maybe the fleet enema the first time, but only if you don’t empty your bowel in the morning. I never had a problem with doing that everyday. As far as the full bladder, I started drinking from a bottle that was given to me around 40 to 45 minutes before the appointment. I would finish around 15 to 20 minutes before arriving. So it looks like you will start drinking in the car. Don’t worry, when you arrive they will scan you on the table to see if the bladder is full before they start the radiation. It only takes a couple of minutes and you are finished. It will become quite routine after a few sessions. When you wake up in the morning just do your normal bathroom routine. I do feel for you and the long drive every day. When you get off the table make sure you urinate immediately. On the drive home you may have to go again, so have some restrooms in mind along the way. Also, ask if they will be using the SPACE OAR gel spacer to protect your rectum from RA damage. It worked for me and ask for it if not mentioned. I forgot to ask, what time is your appointment? My best to you. If you have anymore questions we are here for you.
Jack

1Guyster,
Listen to Cyclone closely. He offered several good suggestions to prepare for and during your treatments. You should review the instructions for your first appointment. The enema is usually for the first appointment so that they can map out your prostate, bladder and rectum. Over the first couple of weeks, you'll develop routine so that you will have the full bladder and empty rectum. I found the technicians very helpful and supportive. Also, I would suggest that you meet with the clinics Social Worker to see if they have financial support for your travel expenses. My clinic offered me $50 a week for gas, but I accepted just $25 per week because I drive a hybrid car and was not using up the gas that a full gas drive car uses. Some clinics may also have some type of housing available for patients that need to drive longer distances.
Oh yeah, I just remembered, wrote a countdown on my calendar and crossed of each day after I completed a session. At the end of the week, I treated myself to a pint of Ben and Jerry's Cherry Garcia non-dairy ice cream. So, reward yourself at the end of the week somehow, you've earned it.
I pray that your treatments go well and hang in there. They will be over before you know it!

Boomer

Up date on Mayo visit and a couple questions

Had two appointments on 9/20/22 and three on 6/21/22. First was a blood draw, second was an MRI. Blood work looked normal except PSA, went from .31 on 8/24/22 to .34 on 9/20/22. Blood work and MRI went smooth, no problems.
Second day, 9/21/22 started pretty good with a meeting with an research person, second appointment good with the nurse that briefed me about the simulation process. I told her I have problems with holding a full bladder, or even knowing when's its full due to back surgery and prostate surgery. Pretty numb from the waist down most of the time. Also told her that it is not uncommon to drink several bottles of water and not need the bathroom for hours. Advised me to go the bathroom and then drink a bottle of water while in her office. This was done approximately 40 minutes before heading for the treatment room.
The simulation process. I know my experience is not common, or maybe more so than I realize.

They did a quick scan to check for bladder fullness, was not full. I was given a bottle and a half of water and laid on the table for 30 minutes. Bladder still not full, laid on table for another 30 minutes. After an hour the water finally filled the bladder and immediately felt like I couldn't hold it for very long.
It was at this point one of the three nurses, all very nice young ladies, told me that they would now start the process. Process included getting aligned perfectly, applying tats, telling me that I have gas and need to fart, (didn't work with full bladder), having a doctor insert a catheter for dye in penis with penis clamp then insert a balloon device in the rectum. All this started with my bladder feeling like it was going to pop. They finally got through with all they had to do, at some point I couldn't control the bladder and made a mess. Felt really bad about the mess and doctor came by and told me I needed to do better with water next time as I was on the table for an hour before they could do anything. I nearly got up and left, only reason I didn't was that I remembered the advise of Cyclone-ISU concerning giving yourself grace and that there will be accidents. Went into treatment room at 2:45, out at 5:00. I hope that they got the correct ailment points with the way I was squirming around. Thought about it most of the night and decided to try continuing with the treatment. They called the next day for me to come in for the first of two ADT shots.
We are waiting for them to call with a date to start treatment.
Any thoughts on getting the bladder just right would be great. Also going to change my diet for bowel and gas control. Am still worried about another bad experience. I was thinking it would be neat if they had a prescreen on bladder fullness like is done in the urologist office. That way you would be ready to go when entering treatment room.

Sorry about the little rant, know that most don't have problems with this, but have to take action with PSA going up. Would like to mention again that all the staff we dealt with were super, and regret leaving a mess for them to clean up.

Thanks for any help/insights

Guyster,
Your doctor is a jerk. You might have asked him if he could have done better given the circumstances. It was hard enough for me to time my bladder without having your issues. The radiation won't care if you are wearing Depends during the treatments, so that's what I would do in your shoes.

We all do the best we can while on the table. Sometimes accidents happen to lots of guys, regardless of the doctor's idiotic comments.

I hope your treatments work. Good luck!

I had an 1 1/2 hour commute too, had to get creative as the treatment caused urinary urgency. The solution was to wear loose fitting shorts and use a hospital type of urinal bottle as needed, which was often. Plastic under on a towel over the seat cover, and a loose towel on top as needed while pissing, since the car was low to the ground.
Wouldn't have been able to make it otherwise, Worked perfectly and was driving a manual transmission at the time.

Hey 1Guyster,
Your post on your first sessions brought back memories of my first first session. It was on my birthday this year. I was told that I didn't have enough water in my bladder so three times I had to go sit out in the waiting area and each time drink about 14 ounces of water. By the fourth time I went in for my treatment, I swear, I had more water in my bladder than a camel! Well, halfway through, I felt like I was ready to embarrass a racehorse. Well, my session ended, but the technicians were too slow at getting me off the table and "thar she blows!" I urinated all over the place. The technicians were very sympathetic and offered me some replacement clothes, but I was so embarrassed, I just said no thank you, grabbed my stuff and drove the hour homef. All the way home I was focused on my accident, then something hit me. I just made my first aggressive attack on my PCa (I feel like my ADT is not as aggressive as my radiation). I just smiled and said to myself, "happy birthday!" Over the next 9 weeks, I had a few very close calls and one minimal leak. Again, I was offered a change of clothes, but I refused and went right home. My technicians were awesome. They offered strategies all along the way and they worked. There were a couple times that I was ready to leap of the table and run to the restroom just in the nick of time. I guess what I'm trying to say is that it happens to all of us and the technicians are very understanding. It won't be their first time that someone getting treated has had an accidental urination. They know that you're trying your best to make it through the treatment without any accident. A couple things that I would do to take my mind off my bladder while being treated was to pray, sing songs to myself, count backwards from 100, ask the technicians to pipe in familiar music and sing to myself to the lyrics and study the radiation machine (I forgot the actual name) as it made it's passes. I tried to look for little scratches or screws or anything that took my mind off of my bladder. Also, my technicians learned that I did much better when I went into the restroom to "relieve a little of the pressure" before I got on the table. Oh yeah, I stopped drinking my coffee and OJ before I left for my 1 hour drive. I actually took a Yeti of coffee with me to reward myself for having a successful treatment. I usually had to stop on the way home, at least twice to relieve myself. I hope some of this rambling post helps you. We're all behind you as you go through your treatments.
Boomer

Mayo called with a start date of Oct 3 for radiation treatment. Dropped number of treatments from 34 to 33, one less travel day.
Since I had issues with full bladder control during the simulation procedure I have been practicing for the Monday appointment. I am finding that numbness's due to back surgery and prostate surgery makes it nearly impossible to hold a full bladder. Made it to 300-350 cc but could not hold at 400-450cc. Would be nice to have some idea CC 's wise what a full bladder would be in my case.

Started researching and reading and found several studies mentioned penis clamps to hold a full bladder for 30 minutes during treatment.

Question, does anyone have any experience or recommendations using the clamp. If so, what brand and where did you purchase the clamp?

I am looking for any and every way to make this process quick for myself and especially the medical team.

81GyGuy said...
https://www.sciencealert.com/cancer-cells-can-mysteriously-go-dormant-for-years-and-scientists-are-beginning-to-understand-why#:~:text=for%20some%20patients%2c%20the%20cancer%20will%20recur%20after,recently%2c%20we%20knew%20very%20little%20about%20these%20periods.

The original article is here: https://theconversation.com/why-cancer-cells-go-to-sleep-94956

Wanted to thank all the forum members that gave good advice concerning radiation treatments and what to expect.

I started IMRT with 33 treatments on October 3 and finished November 16th. By far the hardest for me was the simulation procedure to get the alingment marks placed. Long story short they had me empty my bladder about 45 minutes before the procedure and drink one bottle of water. On the table they found the bladder was not near full enough so they started giving me water. Laid on the table for nearly an hour before the water started hitting my bladder. Then in quick order, stay still, cat scan, catheter in penis for dye and ballon in rear for some reason. Couldn't hold the bladder and made a mess.

The actual treatments went pretty quickly after I developed a routine for filling the bladder. Since we were driving 80 miles to mayo I had 3 16 oz bottles of water that I had marked in equal parts. 30 minutes after leaving the house I started drinking a marked section every 15 minutes until we arrived at Mayo. Usually was just starting to feel the bladder pressure at Mayo. Then headed to radiation waiting room for the most important part of the procedure, the Clamp.

Big THANK YOU to Mumbo, after the first couple of treatments I explaned to the tec that there was no way I could hold a full bladder. I mentioned that I had been advised that the clamp would make things a lot easier. He returned shortly with my blue and white friend. Made a huge difference in my case, carried it in my pocket as I didn't want to loose it. After the clamp drank another half bottle about 40 minutes before treatment time. Worked well enough the techs told me that I was one of the very few that had the full bladder for all but three treatments.

Did follow suggestions to have a carry bag with extra shorts and other small items. Also packed some liners along as they were needed when I didn't get the clamp just right.

Strange enough the bowels were only a problem once when they asked to me to get rid of gas. The clamp allowed me to have bowel movements without draining the bladder.

It was important to maintain a strict/diet procedure during the week, then I slacked off for friday afternoon and saturday then back on to routine on sunday.

Side effects have been mostly tired, burning on urination, getting up 4-6 times per night and the hot flashes.
The ADT has caused more issuses for me, confusion.very tired and feeling pretty down.

This brings up a very important question. I received the first ADT shot a week or two before radiation started. Next shot due December 19th. I have been thinking ( a bit late I know ) about what several of you said concerning having radiation without really knowing where the cancer is. I researched the Dr mentioned by Cyclone-ISU and found a thirty minute video where he explaned things very well. I wish i had watched it before taking the steps I did. The main thing he stressed over and over was DO NOT do radiation until you know which zone the cancer is in. He does think out side the box and I really liked what he was saying. One eye opener was his statement that their research showed that in cases like mine the cancer was located in the prostate bed 33 percent of the time and had already relocated else where 45 percent of the time. Convinced that I let emotions over ride logic and common sense.

The question: the radiation is done, one three month ADT shot done, can't change these. Next ADT shot December 19th. Can decide not to take the shot and wait to see if the cancer is undetectable or not. Or take the second 3 month shot and wait to see the results. Would be glad to get past the ADT side effects. I did have blood work at the VA a week ago and results were T level was undectable, PSA <0.10. If the cancer returns have already decided on a trip to visit the other Doctor.

Would really appreaciate your imput.

Guyster:

Got a question for you, but I prefer email. So, if you can, I'll give you my take on your question (been there) and ask you mine. Please email me as your email address is unavailable.

Mel

Guyster:

Email sent. Let me know that you got it. The problem is HWs. I'll post a thread on it.

Mel