Another Man's Perspective on Radiation and SPACEOAR

I don't know if this guy did the 40 session, the 20 session or, like me, the high voltage, intensw,  Castle Bravo, 5 session detonation (handled with precision though, with relatively few side effects it seems....... so far).  And for this, we are grateful.  Another man's perspective:

"I am on my final week of proton therapy for prostate cancer and have had no side effects. Several others have just completed their treatment and they also have had no issues. Most doctors will not tell you about proton therapy and it’s up to you to do the research. I am so glad I chose this option. The advantage of proton therapy is the radiation can be controlled so the majority of the dose goes into the prostate unlike conventional radiation.

As a result only a small amount affects other organs. The doctors also inject a gel called SpaceOar which pushes the rectum away from the prostate which minimizes the amount of radiation that it is exposed to. Everyone that I have spoken too is very happy with this treatment because there are little to no side effects. Definitely check into this before making your decision."

https://prostatecancer.net/stories/treatment-options/?fbclid=IwAR0a63ym0ERmh42tUayHyGnSUly5YpnSvtAqAYCM1Od4wNFY5Qp2r5gnElI

Update After Meeting With the Onc 3 Months Post SBRT

Met with Dr. Lo last week and we reviewed the PSA test and MRI..  He confirmed much of what I discerned from the MRI Radiology Report.

He agreed the decrease in PSA and the slight decrease in the size of the largest tumor in the gland were both things I should be happy about.  He reminded me that radiation is kind of a slow process in that what it does to cancer cells DNA doesn't happen overnight.

On the flip side, he said that the "extracapsular extensions" were unchanged.  That's good in that they don't appear to have grown but not so good in that they haven't shrunk either. The MRI stated:  Relation to capsule: gross extraprostatic extensions.

He further reminded me, again, this is not curative.  We'll play Whack a Mole with this metastatic cancer.  No matter how you treat the tumors, if they have metastasized, there are break off cells running around in your body and will reappear somewhere at some point. So now we just watch and wait.  He went on to say that the peripheral neuropathy I struggle with in my feet/hands, arms/legs is something that I'll likely live with going forward.

Let's break down where I'm at system by system:

U/G Toxicity

I'm pleased to say that my urinary function is back to pretty much normal.  I'm not taking the Azos/phenazopyridine (which is VERY effective btw, your urine just stains anything and everything it comes into contact with). You have been warned!  lol  Sometimes I still have a sense of urinary urgency and that comes and goes.  I keep a medical grade urinal close to the bed just in case.   I'm still taking Flomax .4mg at night and that seems to be getting me through. I may be able to discontinue it in the near future. I'm having some off and on pain that I'll address below.

Rectal Toxicity

None.  Aside from a little bleeding and pain the first few days, I've had ZERO further issues.  I poop like a happy man :) (and it REALLY is the highlight of my morning....lol!). I am SO delighted I went with the SpaceOAR implant.  Moving at risk organs away, even by mere centimeters, can make a huge difference.

Sexual Function

I am happy......indeed gleeful that so far erections are happening as they should and I haven't been using sildenafil in the same dose or even every day.  This is a good thing because Mr. Johnson doesn't stay happy if he doesn't fill up with blood a few times a day and Mr. Miller gets cranky if that doesn't happen.  A healthy penis is important for many reasons, both physical as well as mental and I'm grateful for function in this area.  Ejaculate is little to none, which I was told to expect. Less mess?  No muss, no fuss?

Fatigue

This is complaint number 1.  It still makes no difference if I sleep 6 hours or 10, I struggle with trying to find my energy throughout the day.  My urologist, who I just think the world of, said in an email to me, "First off, the radiation will beat up your body. So, you don't have any scar/wound from surgery, but inside you will be fatigued. Rest up and relax. It will help."  Well I keep doing that but I'm still struggling with it.  I had two friends come to town for the July 4th weekend and I had trouble keeping up.......and one of them uses a wheelchair.   So yeah, I stay tired.  I'm gonna try and get myself to the pool and gym in the next week and see if I can find my stamina again.

Pain

Pain from the SBRT treatments doesn't really seem to be a thing.  That said, I HAVE been having on and off pain that isn't really scrotal or testicular, but more at the bottom of the pelvic floor/well above the scrotum and testical, all on the right side where the larger tumor lives. It ranges from a dull ache to out and out There Aren't Enough Pain Killers to deal with this pain.  I even went to the ER right before the move because I was just writhing.  They finally managed to get it tamped down to where I could tolerate it.  My oncologist wasn't sure (I told him maybe it was psychosomatic) what it was but mentioned "pain transferral is not uncommon."  I'm seeing the urologist Friday and he said, "Above the testis is the epididymis and it's common for it to get inflamed."  So, we'll see.  In the meantime, it often feels like I caught a dodge-ball to the groin.

Finally regarding pain, the neuropathy caused by chemo continues to be an arch foe. I don't talk about it much because people get tired of hearing about it. But here goes.....before I get out  of bed, I take a pain med and I lay there for another 30 mins +/- so that it's not excruciating when I step out of bed.  I try to work a few hours 4 days a week but I pay for it in feet/ankle/leg - hand/wrist and arm pain.  I've kept working (bartending/serving) because I can medicate myself so that it's tolerable, it get's me out and about, gives me a little extra income and gives me some walking exercise.  I dread the day when I can't tolerate being on my feet. Ya gotta keep moving!

At this point, Dr. Lo and I are going to check in again in 3 months and repeat the PSA and see where things are.  He did mention, off the record, that given the fact I was refusing systemic treatments (In this case, hormone deprivation) and had been since early 2015, I was doing amazingly well and that "whatever I was doing (cannabis), I looked really 'good' to keep doing it" and that given my diagnosis and path, he was really surprised.  Aside from that high CBD/THC cannabis, IMHO, I feel that choosing to forego erasing testosterone from my body has helped tremendously.  Now oncologists will tell you that T feeds PCa cells and, therefore, you most remove it from your body.  Some men even choose to be surgically castrated.   No thank you.     I'll either live here feeling like Scott, or I'll check out and see what the next go round is alike.

In a nutshell,  that's where we stand.  Not perfect, but not as bad as it could be and I seem to keep buying time even without doing everything the docs would like me to.