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To have salvage RT or not !

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Posted 6/7/2018 1:23 PM (GMT 0)
Hi Guys
Well I just cannot decide weather to have Salvage RT or not, the side effects scare me, to add to my dilemma the Onc said I could live a good QOL for 10 years or more (65 now) with my PC. Then he said there is no evidence that the RT would extend my life and my chance of a cure was 50/50 and I may outlive this PSA rise.
He said the RT may not benefit me and QOL may tumble. I could take the tablets in ten years time if RT failed and live on.
He said he guesed the pc would still be in prostate bed, and if not I have suffered for nothing.

I know I am fortunate compared to some of the Guys who write here but this is where I am !
I wondered if I could put it to the vote ha!
Any comments apreciated.
Cheers
Dick

Rp 2011, Gleason 7 3+4, with extra prostatic extension, apex positive over 3mm. pT3a N0 Mx, PSA after opp was 0.01 stable to 6/14- 0.02. 10/15-0.04. 3/16 0.06.
4/17 0.08. 9/17 0.9
3/18 0.1. 5/18 0.11
Posted 6/7/2018 1:40 PM (GMT 0)
SRT is the next logical step for you as it has the potential to be curative. The question is, are there any mets? You don't know and at your PSA level a scan isn't likely to show it.

For me the question comes down to, "Try for the cure or admit defeat and just start palliative treatment when needed."

SRT is mostly an endurance test and the long term side effects, if any, are manageable and likely better than being on lifetime HT.

Andrew
Posted 6/7/2018 3:33 PM (GMT 0)
Have you talked to a Radiation Oncologist ?? Medical Oncologists are not up to date on radiation treatments...The side-effects from ADT are worse than radiation in most cases...
Posted 6/7/2018 4:38 PM (GMT 0)
based on your path report I think it is systemic...the next logical step?? " rule books are made of paper...they will not cushion a sudden meeting of stone and metal " Ernest K Gann Old timers may remember him from the movie The High and The Mighty based on his book of the same with John Wayne and Robert Stack...you may whistle its academy award winning theme music now and then...
Posted 6/7/2018 5:36 PM (GMT 0)
Dick,
If it’s a poll you want, I’d bet most guys in your position would have SRT. It’s not a tough call. So what about SRT scares you so much that you’re inclined to skip a decent shot at a cure and resign yourself to mets, lifetime castration, and chemo in your 70s?
A bunch of us HW members just went through SRT with minimal side effects. (See the ADT-SRT Journey thread.) The modern technology focuses the beam and varies its intensity so precisely that the worst SE is usually boredom. There may be a substantial hit to the pocketbook, too, depending on your insurance and how far you have to travel to get the treatment.
Posted 6/7/2018 9:11 PM (GMT 0)
I don't know why you wouldn't want SRT. I ended up with SRT and I am happy I did. So far my PSA is undetectable (<.02 ng/ml). SRT was a non-event for me. I would get up at 4:30 am everyday to get to work, and for 4 weeks (39 treatments) I stop off on the way home everyday to get nuked. Usually in and out of the radiation center with 15 minutes. I never changed my diet or anything else. I didn't have any side effects during or after SRT. It has been almost 3 years since my SRT and still doing great.

Lastly, I would want radiation before undergoing hormone therapy which poses physical and physiological effects.
Posted 6/7/2018 9:16 PM (GMT 0)
Hi Guys ... thanks for your input, Well I am scared of - cancer of the bladder, having to wear a catheter full time because of urether damage and strictures, long term bowel problems, bone damage to the pelvis, lymphedema of legs and scrotum, I know some one who had nerve damage and is allways in pain.... so that's what I am scared of !
Thanks for your frank replys
Posted 6/7/2018 9:50 PM (GMT 0)
Dick, regarding the SEs that you're worried about, these are on the far end of the spectrum as to what's possible. I would agree with the advice to see a good radiation oncologist and get his/her opinion and to discuss the probabilities of side effects.
Posted 6/7/2018 10:17 PM (GMT 0)

dick1 said...
Hi Guys ... thanks for your input, Well I am scared of - cancer of the bladder, having to wear a catheter full time because of urether damage and strictures, long term bowel problems, bone damage to the pelvis, lymphedema of legs and scrotum, I know some one who had nerve damage and is allways in pain.... so that's what I am scared of !
Thanks for your frank replys

I don't think it's a slam dunk. I think it's a psychological issue as much as it is a physiological issue. Few men find the prospect of resigning themselves to the inevitability of there being cancer in their bodies that may kill them particularly appealling. So with SRT...that inevitability factor is taken away...with the result being....they can sleep at night....and look themselves in the mirror. But not all men are the same...psychologically. I believe it to be an intensely personal decision....where there is no right or wrong....but rather...."How best to live with myself?"


One other thing I would say....that does not get said on this board....I would suggest that anyone contemplating SRT have a cystoscopy before hand. It's an easy thing to do...that gives more information with which to make a decision with (if that's the kind of information one wants)..It makes sense to me that....the men who have stricture problems after SRT may have had one all along and not known about it and the radiation lets them know they did. You can have a stricture...or bladder neck obstruction...and not know it. Some men live with it if they are not doing any harm (which is my case).


These questions....to my mind...are not slam dunk decisions.


ok.....enough from the peanut gallery....
Posted 6/8/2018 12:34 AM (GMT 0)
Andrew said it best. Do you want to go for a cure, with the small risk of all those things you are scared of, or do you want to eliminate that small risk, and just live with cancer and future treatments to control it, with a high probability of crappy side effects.
Posted 6/8/2018 11:03 AM (GMT 0)
Dick... I was where you were a year ago after coming out of surgery detectable. Sometimes I think the decisions for BCR can be harder than the original diagnosis.. and a lot of other guys must feel the same way I started the ADT and SRT Journey thread that SP mentioned to kinda see what other guys were experiencing and kinda to talk about my experience through it kinda scary at first you hear lots of kinda bad things about radiation and such. But now after seeing that the thread is on it's 3rd page and thousands of posts I think that everyone has questions about further treatment involving radiation and adt . My only advice would be to research and find yourself a top notch radiation treatment and a good RO.

Larry
Posted 6/8/2018 12:07 PM (GMT 0)

dick1 said...
I am scared of - cancer of the bladder, having to wear a catheter full time because of urether damage and strictures, long term bowel problems, bone damage to the pelvis, lymphedema of legs and scrotum, I know some one who had nerve damage and is always in pain.... so that's what I am scared of! Thanks for your frank replys

Dick - I am sorry to say that I have been thru - and survived - many side effects of practically every form of treatment, but oddly enough, I never thought about the SE's beforehand. I didn't want to worry about any possible negative outcomes. I was just going for the cure, and my attitude was always "darn the torpedoes, full speed ahead".

The big question for you is, how fast does cancer spread from the pelvic floor to the rest of the body? If it has already moved into your system then SRT isn't going to do any good. Salvage radiation was mentioned during my first surgical consult. Lo and behold, practically everything that could possibly go wrong, did go wrong, and I am dealing with some of the pain and discomfort you mentioned. But because I did everything possible to beat this disease, my PSA is now zero - at least for the time being.

Being concerned about the outcome is a good thing, but IMO it is better to treat early than to later wish you had.

Larry, don't forget that before the 3 page SRT Journey thread is now in it's third generation. Each time before, it grew to ten pages and a new one was started, so it is actually more like 33 pages. Big congrats to all the guys who have endured ADT and SRT! (pats self on back)
Posted 6/8/2018 3:41 PM (GMT 0)
Dick,

I asked my RO exactly that. He said that cancers caused by radiation treatment are very rare, and that it was highly unlikely to happen. And this is largely due to how accurate the focus of the beam of radiation is.

I'd do it again if I could.

My only SE was an increase in incontinence that over the last 3 years has gotten better. So for me it was temporary.
Posted 6/8/2018 3:46 PM (GMT 0)
Larry said.... "Sometimes I think the decisions for BCR can be harder than the original diagnosis."

I find this to be very true, wrestling with it now. Unfortunately for the OP, and me, and many other guys, there is science, but there doesnt seem to be any consensus. So its our call whether to treat early or wait.
Posted 6/8/2018 6:34 PM (GMT 0)
You may find the following nomogram useful in informing your decision:

riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/

I think your odds of a permanent cure is about 60%, probably higher if you are treated with a higher radiation dose. You might also request a Decipher test to see what your genomic risk is.

It's true that you have a very low probability of dying from this or suffering from metastases within the next ten years. If you have significant comorbidities, that may be enough. But would you like to live to be over 75?
Posted 6/8/2018 7:02 PM (GMT 0)

Tall Allen said...
You may find the following nomogram useful in informing your decision:

riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/

I think your odds of a permanent cure is about 60%, probably higher if you are treated with a higher radiation dose. You might also request a Decipher test to see what your genomic risk is.

It's true that you have a very low probability of dying from this or suffering from metastases within the next ten years. If you have significant comorbidities, that may be enough. But would you like to live to be over 75?

Thanks TA....great calculator. just one question (not to derail...hope it doesn't) but....

Does it make sense that the longer a man goes without SRT (at any given PSA number) the longer the opportunity that metatisis has to occur (which would in turn, increase the chance)? It just seems like a man @.05 for four years would be less likely to be cured than a guy who got SRT as soon as his PSA hit .05.

the nomogram doesn't ask for time at a certain PSA
Posted 6/8/2018 7:20 PM (GMT 0)
IT-

There was actually a study that looked at the question you're asking. They found that the PSA at the time of SRT had a very large impact on its success, whereas the time since prostatectomy did not:

/pcnrv.blogspot.com/2016/09/very-early-salvage-radiation-has-up-to.html
Posted 6/8/2018 7:29 PM (GMT 0)
It’s interesting that the nomograms linked to, inlike the MSKCC nomograms on SRT, doesn’t distinguish between g7(3+4) and (4+3)

What’s also interesting is treating at .08, .1, .15 or .2 made no significant difference in 5 year BCR free
(66% at .2 and 68% at .08, for g7 without ADT and ass8ming negative margins)
Posted 6/8/2018 7:46 PM (GMT 0)
Pratoman-

What you seem to find "interesting" are merely sample size limitations. That's always an issue with nomograms.
Posted 6/8/2018 9:06 PM (GMT 0)
So if that’s the case, which I don’t doubt, then honestly, what’s the point of even developing nomograms?
Posted 6/8/2018 9:59 PM (GMT 0)
I sincerely thank you all for your replies.
I will let you know how I get on in the next few months.
dick 1
Posted 6/8/2018 11:28 PM (GMT 0)

Tall Allen said...
IT-

There was actually a study that looked at the question you're asking. They found that the PSA at the time of SRT had a very large impact on its success, whereas the time since prostatectomy did not...

Allen....would PSA at the time of SRT, being dramatically reduced by ADT, be the one to apply in your analysis, rather than the zenith PSA before starting ADT confused
Posted 6/9/2018 1:12 AM (GMT 0)
Pratoman- they are still useful for the patients for whom there are adequate sample sizes.

Garyi- They looked at PSA before treatment was initiated - so that would be before adjuvant ADT was started.
Posted 6/9/2018 1:21 AM (GMT 0)

Pratoman said...
It’s interesting that the nomograms linked to, inlike the MSKCC nomograms on SRT, doesn’t distinguish between g7(3+4) and (4+3)

What’s also interesting is treating at .08, .1, .15 or .2 made no significant difference in 5 year BCR free
(66% at .2 and 68% at .08, for g7 without ADT and ass8ming negative margins)

if you want a change it....add ADT. It raises my cure rate by double digits. The numbers it is spitting out are in line with what my RO at JH was saying.

If or when I need it srt....I'm not so sure I might not take a hit of ADT for 6 mos. I don't know if there's any reason for pulling punches at that point. the RO up there said he recommends it but didn't elaborate. Just said we'd do it without it if I didn't want it.
Posted 6/9/2018 1:57 AM (GMT 0)
Adding ADT in my casevraised the chance of success by 10%. Problem is I’ve seen studies showing adt in men with coronary artery disease increases the chance of cardiac events, especially in the first few months of ADT.
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