The Vault. My 25 days of IMRT.

Stan one of the first things my urologist said was that many young men choose surgery. Although I wasn't young I still visited with the best PC surgeon available in the state. He said because of my scaring from a previous TURP I would not be a good candidate for surgery. After 7 months of research, I now realize that there really aren't that many treatment options for PC. At first, it seems there were too many to make a decision, but as I gained additional information I was able to eliminate many. I hope that folks will take their time in their decision-making weigh cost, the risk of complications, treatment outcomes, diagnostic data, prior health conditions, family longevity and genetics, and other factors prior to selecting any of the potential life-changing treatments for PC. It isn't always black and white.

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68 yrs., PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, T3MRI 9.6.18 The prostate gland measures 3.0 x 2.6 x 3.4 cm in CC, AP, and transverse dimensions, for a total prostatic volume of 14 mL. Post-surgical changes of prior transurethral resection of the prostate gland again noted. The prostate gland now demonstrates mildly diffusely decreased T2 signal throughout, consistent with interval hormone therapy. The focal 1.8 cm PI-RADS 5 lesion seen within the right mid gland extending into the base and apex on the prior MRI is no longer visualized as a focal lesion. No other focal prostate lesions are seen. testosterone <7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 93 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.

After a tuna u can’t have surgery pretty sure get in a strict diet and do active survsilsnce

Yes, the water is a side effect - I still dislike drinking from water bottles...

So far, good progress.


Andrew

My RO doesn't do spaceOAR, some don't think its needed or that its an added pain in the butt.
He also doesn't do the markers, same thing when I asked him about it.
I cant remember what you are having done, but my treatments are based on the pelvis/prostate with Brachy after.
I'm lucky, in a sense, that I have a huge bladder and hold a lot of liquid. I have never leaked before as I have never had any issues with my prostate before all this crap started happening. I was in complete denial when my PSA increased. No way did I think I had cancer. Why, because I had zero symptoms. So much for that.
Believe me, these nurses/techs have seen it all, and I have read a few stories of patients pissing on the table by accident. I would not worry about a thing in that dept.
I'm not sure if you can do this, but I'm able to hit the bathroom if I'm full to the brim and relieve myself just a tad, then stop. Its also a great Kegel exercise, and if you are not doing these, I suggest to start now and do tons of them everyday. But don't try this at work when one of your cohorts is peeing next to you.

Post Edited (ldog) : 9/19/2018 10:04:07 AM (GMT-6)

I had my simulation today and one thing I learned is that MSKCC in NYC, they do things a bit differently. Instead of leaving it to you every day to show up with a full bladder, they ask you to arrive one hour prior to the appointment time. After you get into your gown, they have you completely empty your bladder. Then you are asked to drink a full cup of water, same amount every time. And then you wait 45 minutes till your treatment. They explained that this ensures that you have the exact amount of water they want in your bladder every time. They checked it today on the MRI and said it was the perfect amount for me.

They will check it on the ct scan every day before zapping me. From what I understand (I think our member Progressing, said this) the suburban location, at least in NJ, only checks it once a week. But you don’t have to show up an hour early.

The rules are different between primary and salvage RT. Water in the bladder is much more important for SRT since you don't have a prostate. With primary RT with a prostate, you're bladder is mostly out of the way and less water is needed to protect it.

Andrew

InTheShop said...
The rules are different between primary and salvage RT. Water in the bladder is much more important for SRT since you don't have a prostate. With primary RT with a prostate, you're bladder is mostly out of the way and less water is needed to protect it.

Andrew

Thank Andrew that is what I thought but some of the other patients in the my waiting room were primary (I am 99% sure) but they had METS and were getting 44 RT's! So maybe the METS have something to do with it as well as SRT!? Dave

I wasn't having SRT, but I was told they just didn't want my bladder empty. They didn't care too much about precisely how full it was.

Here's a pretty good you tube animation of the "machine" that is being used to treat me. For any new comers, you kind of get the idea as to what lies behind that 1 foot thick door. Now, this is just one model, and I asked specifically what they used, not that it really matters all that much these days as I doubt anyone is being zapped by a machine that is really out dated. But I would ask just to make sure.
https://www.youtube.com/watch?v=4SdMLL4nuco
Here's what the person that is in the control room is watching. Now, this is also just one piece of SW, but you get the gist of it.
https://www.youtube.com/watch?v=ymnUkUWXEvY

This isn't related, but the doctor that will being taking care of my brachy therapy called me out of the blue. He isn't in the same facility that is doing the IMRT but is working with the RO. Asked me how everything was going, SE's etc. Asked when I thought I would be done since I have missed a few sessions. He then said that no matter what we will wait two weeks after the IMRT sessions and will go from there, with 6 weeks being the max amount of time to wait after the last session.
The reason why I'm mentioning this, and the doc that is doing my brachy has done 17k of them, is to let others know that you don't have to get it done right after imrt. If you are feeling like crap, hold off, this is your body, not the doctors. Just because he/she tells you are scheduled at a certain date, tell them you want to wait because the SE's suck. But don't wait more than 6 weeks as you could have jumpers.

Post Edited (ldog) : 10/10/2018 12:16:27 PM (GMT-6)

you're almost there!

1-month update, 5 more treatments to go!!!!
Water…First and foremost, nothing has changed in regards to me hating having to consume water in the morning. I bought flavored water thinking it might help, but it doesn’t.
Food taste... My doc thinks its interesting that my taste buds are so screwed up because of the radiation since I’m not receiving chemo or radiation to the neck/mouth, etc. I really don’t know what to tell him, but it started on day one and comes and goes. What’s is also weird is that food that I use to like does not taste great any longer. I have a very acute sense of smell which my GF thinks he weird. I mean I have a real hard time with scented candles that are not even burning. I’ll bring something up smell wise and she’s like, “I have no idea what you are smelling because I can’t smell a thing. “
If I eat anything that is really spicy or has any type of sauce/gravy, you can bet your arse that I’m heading to the toilet an hour or so later.
A friend visited me over the weekend and I ate and drank like I have not done in 10 months. Two days later and I’m till paying for it, diarrhea wise.
Urgency…Yep I now pee more with less coming out, but it does not hurt. A little uncomfortable at times though.
Doctor visits…I’m not the best patient. If I come out of the vault on the day of my weekly visits and no one says to me, “right this way to see the doctor.” I’m out of there. So, I got on the naughty list. Head nurse said to me yesterday when I came out that if I did not wait and see the doctor he would stop treatments. Of course, to that I said, “fine with me, let him stop them, 20 treatments is enough for me.” Yes, I’m an a-hole at times, but I will not put up with having to wait more than 15 mins for any doctor. Now they page him, and he’s there within 5 mins. Cracks me up because the nurse will not leave the room until he shows.
I know I have said this before, but the receptionist’s, nurses and techs are the nicest group of hospital employees I have ever dealt with.
That’s it.
Peace out!

And that's a wrap. Glad that's over with.
Okay, so by order of what was worse...
1. Water: Drinking that much water early in the am was almost sickening at times.
2. Bowels: Everything was pretty much fine until 10 days ago, then it hit me. Pretty much diarrhea once a day if I didn’t watch what I ate. Even then, my stomach and bowels took a hit. Will update in weeks to come if and when this gets better.
3. Urgency. It was like I hit a Plateau about two weeks ago as nothing has changed. Did not get any worse, and even then, it’s not bad. Still no pain when I P.
Some tips that might work for others..
Wet wipes for sure and aquaphor.
I even bought a sitz bath that you place on the can. Used it a few times, worked great for the times I didnt want to run a bath.
I like taking baths, so this was easy for me, but I took epsom salt and baking powder baths 3 times a week. This helps I find no matter what. Some say it helps detox, not to sure about that, but I'm all about the mind, so I like to think it does.
I'm not going into the suppliments I took, but I did take some. Did they help, no idea.

LD Brachy in 3 weeks unless I feel like crap which I dont think I will.
Peace out!

Post Edited (ldog) : 10/8/2018 2:07:18 PM (GMT-6)