I start Salvage Radiation Monday, January 6th. I know we all ask for prayers a lot here, but I sure could use some right now.
My anxiety level has been through the roof. I watched my Grandfather die of this horrific thing in 1987. He was 72,but I was 55 at diagnosis. I get to turn 57 in the scanner this week...LOL
I am an RN in major University Medical Center PICU and have seen my share of horrible deaths. In all objectivity his was one of the worse I have witnessed.
I think I was less anxious before my surgery April 1st, 2019. I guess I am still a bit upset that I had a good surgical pathology report. Everything was contained and the pathology was exactly what the biopsy showed, one 4+3, one 3+4. I sure was hoping I could have waited a bit of time.
I seem to cry at the drop of a hat. I feel like a blithering idiot. I guess my Italian side and the lack of hormones keep getting the best of me...LOL.
I know there are a lot of guys here that are way more advanced than me. I know I am not "advanced" by any stretch of the imagination, but you all here are some of the smartest people I know!
I am fortunate that my PSA has been relatively low since surgery (0.13 peak in October) and we are treating it at a very low PSA, but it has been very upsetting to go through the surgery and never have been undetectable.
I think the thing that really bothers me the most is due to the relatively low PSA, we have no idea where it exactly is for sure. This is making me crazy. I really hate the idea of going through this and it potentially being somewhere else. I know it is most likely in the Prostate Fossa, but who really knows?
It is such a toxic treatment with potential long term side effects. I know I am getting ahead of my self, but still...
Well, I got some GasX, Fiber, and 500ml Yeti for my water. If you all have any other hacks at tolerating this treatment I would be most appreciative to know. I take whole lot of Turmeric in my morning smoothy.
Any prayers surely would be appreciated. Thank you all very kindly!
Written by
SooHwa99
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Because wherever it is, it is probably too small to be picked up by any scan, you have to treat where it probably is. That includes the prostate fossa, and may include the pelvic LNs as well. Here are questions that you should feel are answered to your satisfaction:
There are some reports, some of them quite trustworthy, on seeding: cancer cells getting into the bloodstream during the RP. Of course, as usual, experts react that there is no real proof...
I get exactly how you're feeling (why am I treating it this early? Oh yeah, I know, because it works better... but it's bloody frightening... why am I letting them shoot in the dark? etc etc) because I felt exactly that way when I had eSRT in Mar 19 at PSA 0.12.
My advice is:
1) the hardest thing for me was to present with an empty rectum, so I fell back on little liquid enemas called Microlax, used about 15 minutes before I jumped into the car for the 35 minute drive... enema/shower/drive... that got it sorted.
2) look around at the little kids in the waiting area having RT for all sorts of stuff and see the pain in their parents' eyes.... really sorted my priorities out. Sure, I was probably torching some equipment I was kind of fond of, and possibly to no good effect - but what were they dealing with??
3) after a couple of weeks, you get into the groove and begin to feel a lot better - you really do. I was profoundly humbled by the quality of the young people doing their damndest every day to give me the best care they could.
This isn't meant to be some happy clappy feel-good advice - I found eSRT really hard, but at the end I was glad it was over and grateful for the care I was given, all at the same time. I'm sure it will be the same for you too.
You’ll do great just listen to your instructions it’s not that bad I did 39 times the worst part for me was the adt eligaurd still felling hot flashes and dizzy spellls 8 mounts later hang in there you’ll breeze though it,
I think you will find salvage radiation less of an issue than you think. The hardest part.for me was keeping a full bladder which is necessary to reduce unintended consequences.
Others have touched on the key things: full bladder, ADT, low fiber diet, and clean bowels. I did not really watch the fiber intake and had no problems. Everyone is different, Someone mentioned enemas. I was told I did not need to take them. I did take Metamucil at the beginning. You might want to wait and see if enemas are needed and I would check with your RadOnc, if you haven't. The thing I would add is exercise, even when you don't feel like it. I believe this helped me get through the 39 weeks without any real issues. Best of luck!
Get yourself a male urinal or other container so that you can urinate into it after your scan and be informed as to how much urine you held. this will help you calibrate how much and when to drink your water against bladder fullness. I found this approach to be very helpful such that the technicians were amazed as to how consistent my bladder volume was. I waited until after my treatment to tell them how I did it.
I had salvage radiation last year. 39 treatments, 70.2 Gray. I hardly had any issues with side effects. It was mostly some fatigue in my case, which went away quickly. My Radiation Oncologist said some guys have no side effects. It may not be as harsh as you fear. Best of luck.
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