Radiation Confusion- please help clarify

[MPCSUX]

Referred to and met with radiation oncologist because my PC is active again after almost 3 years. This will be my first experience with radiation. It was explained and I thought I understood but am now completely confused - scans (PSMA, MRI, CT and bone scan) showed activity in prostate, SV, and one spot on pelvic bone PSA undetectable .

I was told there are 2 options he would consider and while they are different the outcomes and side effects are very similar:

1. PROTON

2. PHOTON

And 2 treatment plans:

1. 5 treatments (1 every other day over 2 weeks). 2. 20 treatments over 4 weeks.

One of them I would need markers placed in my prostate and the other didn’t need the markers.

The term SBRT was also used but not sure for which or both?

Can someone explain what the differences are and which should we be hoping to receive (waiting on insurance approval).

We asked about a SpaceOAR and were told it really didn’t make a difference in side effects., but was an additional procedure that could have its own side effects.

So confused and tried to get a repeat explanation in writing from doctors office and the think the did talk to text and now I’m more confused.

Thanks all!!

[Tall_Allen]

As I understand, you will be debulking the cancer with radiation in an effort to slow progression.

The "5 treatment plan" is called SBRT. The place markers, called fiducials, to very precisely guide the intense radiation. (It's what I had, btw.) They will also treat your pelvic lymph nodes and your bone met -- why not?

The 20-treatment plan is called hypofractionated IMRT. They usually use cone beam CT to target treatment at the start of each treatment. They don't need fiducials because sub-millimeter precision isn't as critical.

Proton or photon makes no difference.

I agree with his assessment of SpaceOAR, and it is absolutely a terrible idea in cases like yours where there is a high likelihood of extraprostatic extension.

[MPCSUX in reply to Tall_Allen]

Appreciate your detailed reply! How long ago did you have radiation and how were the side effect during and now?

I have struggled with urgency and frequency and had a TURP in prep for the radiation but have not seen much of any improvement post TURP. Anything you suggest to help with preventing side effects?

Best!

[Tall_Allen in reply to MPCSUX]

I was treated in 2010 and have no lasting side effects. Typical brief irritative side effects for any radiation at the time.

TURP adds more risk of urinary side effects, including incontinence. The longer you can wait after TURP, the better. But I understand the trade-off.

[MPCSUX in reply to Tall_Allen]

Glad to hear you didn’t have lasting side effects! TURP was done April 17. Radiation due to start July 1.

[louschu in reply to Tall_Allen]

Good response but read the science behind Proton. It's more precise and less damaging.

[Tall_Allen in reply to louschu]

LOL at "read the science behind Proton." You've been told a bunch of BS. In actual practice it seems to be the same precision and toxicity as X-rays. See all available science below:

prostatecancer.news/2016/08...

prostatecancer.news/2016/08...

[louschu in reply to Tall_Allen]

I've been thru 40 rounds of imrt and been spot treated 3 times with proton. Get your physics book out

[Tall_Allen in reply to louschu]

You make the mistake of thinking a theoretical framework (Bragg Peak) is what actually happens. Books are no substitute for actual clinical trials.

[louschu in reply to Tall_Allen]

There is not much difference when the prostate is the target. A good psma scan is more important.

When bone metastasis is the target, the difference is huge. No clinical trials apply. I've been targeted 4 times - one photon and three proton in my 19 years since unsuccessful gleason 9 surgery There is a difference.

[Tall_Allen in reply to louschu]

How could you possibly know that without a clinical trial?

[louschu in reply to Tall_Allen]

This is stupid. The cost is the same and one has science on its side. If I had waited on a clinical trials I would be dead. Lots of proof with other cancers. Spot radiation is rare and oligmetastic reoccurrence was initially discounted.

[Tall_Allen in reply to louschu]

Medical science only comes from clinical trials.

[mababa in reply to louschu]

Louschu, I was wondering the same thing re Proton vs photon therapy so I sought a second opinion at Fred Hutchison Cancer Center in Seattle. They have a Proton beam machine there. I actually got to speak with the proton radiologist. He concurred with my first RO that CT guided RT using photon beam was actually better for my condition. He said it’s hard to over rate the value of actually “seeing” the lesions you’re about to zap—something you can’t do with proton beam therapy. Proton therapy does offer greater penetration control over Photon beam machines. This could certainly be critical for treating tumors in the brain, for instance. My RO recommended a Barrigel barrier to help protect regions (rectum) beyond my prostate. So I’m also scheduled for that. Anyway, my sessions are scheduled for August and I’m confident in the photon therapy.

[SportsFanx99]

One of the reasons this is a truly great forum is because of guys like Tall_Allen. He's probably forgotten more in the last 20 minutes than most of the rest of us have ever known! That said, I have a minor quibble with respect to the comment that there is no difference between proton and photon. At this point, the best I can figure is that there still are not any definitive, go to, scientific, randomized, fully authoritative studies that clearly indicate that one is better than the other. Right now, if you look hard enough through the available studies, you will probably find the answer that you want! There are doubtless many reasons for the lack of a definitive study, but here is mine -- after deciding on a treatment, why participate in a study that results in a 50/50 chance of replacing the treatment you want with one you have already decided against? Ok, proton v. photon -- one of the best layman analogies I know of describing proton, is that a proton is like a baseball in your hand. At that point, it has no energy, and doesn't do anything. But when it is accelerated, like when thrown at a window, it carries a lot of energy with it. Then when it hits the window, it releases all of its energy, breaks the window, and falls to the ground. The point here is that, in general, it does not affect anything before or after the window. All energy is released on the window (the tumor). Photon affects everything that it touches, before the target, the target itself, and after the target. And that's where you can run into problems -- you can over radiate structures that don't need it and don't tolerate it very well. Now, you can modify the intensity of the beam, go at the target from multiple different angles, and do various other things to minimize that, but the net is that all structures in the beam will get radiated. There is no way around that. I chose proton based on a number of factors, research, conversations with people that had both treatments, and based on the fact that in general, most proton energy is released where it is needed, not where it doesn't belong, and I believe in the long run, that it will prove out to be the better alternative, specifically with respect to side effects. This is getting way too long but I have been delighted with my results. I had no Space OAR, and 3.5 years since treatment no side effects save for some occasional minor rectal bleeding. No incontinence, no ED. I feel great, and PSA still has not reached nadir. Quick summary -- that's a bunch of words for a minor quibble! TA is correct, particularly if you only consider which has the best chance of curing the problem. But at what cost? I truly believe that you owe it to yourself to understand as much about proton as you can before making a final decision.

[Justfor_ in reply to SportsFanx99]

Carbon ion RT, bigger ball, less long term damage. Not available in the US, expected "you don't need it" attitude by some here. Three installations in Japan, funded by public money, eh, you know these Japs, they are not the "brightest" minds around. Look what Yagi and Uda did to that fancy cloakroom coat hanger. They added a cable and made it a directional antenna. Who would ruin a coat hanger to make an antenna?

[j-o-h-n in reply to Justfor_]

Most difficult job in the world:

Managing a hat and coat check room at a Jewish Orthodox function.

E.g. Hangers are scarce in coat rooms at Jewish Orthodox weddings.....that causes problems when the wedding is over and hat coat check employees and guests search for the coats in the loose coat pile (and I'm not throwing in the yarmulkes)... Oiiiieee Vay

(Jews, best comedians in the world)

Good Luck, Good Health and Good Humor.

j-o-h-n

[Maxone73 in reply to Justfor_]

Also one here close to me at a public hospital (not sure if there are any other in Italy) 😝

[Justfor_ in reply to Maxone73]

Yes I know, but a couple years back when I learned about it it wasn't available for everyday's clinical practice. Only research they would stipulate. Has this changed?

[Tall_Allen in reply to SportsFanx99]

I saw my name, so I read your reply. See my response to loschu above. Do you actually think I wouldn't have investigated this thoroughly before forming an opinion? You seem to have swallowed their company line without investigating whether it is true.

[SportsFanx99 in reply to Tall_Allen]

Happy Father’s Day, Allen!

[SportsFanx99]

An addendum -- I had fiducial markers implanted prior to proton -- make sure you have local anestheic for this procedure if you go that route. I didn't have it for the markers, but I did have it for the biopsy. As such, I can actually compare the difference made by the anesthetic. "Never again" will I submit to a transrectal procedure without local anesthetic!

[j-o-h-n in reply to SportsFanx99]

I agree, cause you're not just blowing smoke out of your butt....

Good Luck, Good Health and Good Humor.

j-o-h-n

[NanoMRI]

Interesting situation and discussion. In your previous post you wrote "Asking if this all sounds reasonable and if we should ask about another treatment possibilities."

If it were me, based on my experiences with four treatments, RP, salvage RT to prostate bed (no ADT), salvage extended pelvic lymph node surgery with frozen section pathology procedure, then one year on ADT as an added insurance compromise, I would give a consideration to RP with the lymph node frozen section pathology procedure. If I could have a do-over I would have had my RP done with this procedure.

But then, my focus was and remains, surgically debunking tumor burden and if it comes to it, deferring ADT and thereby CR for as long as possible. All the best!