Avoiding Salvage radiation?

[DaveNes]

Before Covid 19 I attend a monthly support group. I have heard the horror stories about affects of salvage radiation. Curious about your thoughts of staying away from it and best alternative path.

[Tall_Allen]

They probably came to the support group because they had a bad experience with salvage radiation. Would you rather have side effects of treatment and live or painful metastases and die?

[DaveNes in reply to Tall_Allen]

I think a lot about the people that are there and why. Yes they share and educate as well as look for answers to there next step. I assume most that made out well are not there to help others but there are a couple proving positive feedback.

[Tall_Allen in reply to DaveNes]

You have to look at statistics, not the small sample of people you chance to meet. There is a cognitive error, called "the availability heuristic" which means that the story we hear from one person is more impactful than the stories of a thousand men compiled in a research study.

[Gearhead in reply to Tall_Allen]

Reminds me of "Thinking Fast and Slow" by Daniel Kahneman, Good book IMO. Made me realize that I'm usually a lazy thinker.

[Magnus1964]

I have had both radiation to my prostate and salvage radiation to my Ischium. I faired well with both . Yes, some people do have problems with radiation. If you do have problems with it you can always stop.

I know radiation therapy is scary. I was afraid to have it. Just remember, you can always stop treatments.

[pjoshea13]

Dave,

I had biochemical persistence after my prostatectomy - PSA=0.3. Was the cancer local or distant or both? No way of knowing. Nothing showed on scans. Salvage radiation [SA] was not offered with curative intent. It seemed like such a shot in the dark, but aggressive action was called for IMO.

I had significant morbidity with SA. & although the PSA dropped from 0.8 to 0.3, it was back up to 0.8 three months later. Even so, that was 15+ years ago. It may have played a role in my survival.

-Patrick

[maley2711 in reply to pjoshea13]

Patrick -

Congrats on the 15 years!!!!! I have just 2 questions, to give us some context as to your mostly great outcome after your recurrence. First, what was your Gleason score before surgery? were you given a post-surgery evaluation of your Gleason score? If so, did the Gleason number change ...to what? Let's see, other than the salvage radiation, have you received any other additional treatments..eg ADT?

[pjoshea13 in reply to maley2711]

My GS was 4+3, which did not change. I had success with testosterone [T] for some years. Then I alternated between 3 months T & 3 months castrate (using an oral supplement). More recently, I am using a modified BAT protocol (T injections every 2 months + oral DES).

-Patrick

[garyi]

I've had no issues, other than a little radiation protitis, after SRT over two years ago.

In my experience, some 'support groups' tend to amplify negative issues, as people search for remedies.

Now I've learned it's "availability heuristic". Thanks, Allen

[marlins1]

I had Salvage RT, 39 rx 7/19. Not really that big a deal. Had alittle Proctitis that resolved over couple weeks. I certainly would not avoid it, if you are in curable range.

[harryb48]

I had 39 treatments after my prostatectomy seven years ago. The only issue I had was a little fatigue at the end of each weekly session which went away after a short nap!

[caltexman]

I had salvage radiation a year ago. The toughest part of the treatment was maintaining a full bladder for the treatment. You will figure this out. Side effects from radiation are hard to determine separate from the prostatectomy I had two years ago. My PSA dropped from .28 to < .1 a month after completing treatment. Don't delay; there is a limited time window.

[Hawk56]

I had surgery in March 2014, T2CNoMx, GS 8, ECE, SVE and Margins negative.

18 months later, BCR when PSA came back at .2 then .3.

Started SRT in March 2016, 39 IMRT, 70.2 Gya.

No issues with SRT, no SEs. It did not work though and In Jan 17 a C11 Choline scan at Mayo showed four PLNs but no bone or organ involvement

I did 18 months of ADT, six cycle of taxotere and 25 more IMRT, 45 Gya. No issues with the radiation treatments, no SEs. The radiation treatment were July-August 2018 so kt's been almost two years.

As others have said, we all experience things differently but I would say that the sate of the technology in radiation today and the skill and training of your radiological team can generally make for effective and safe treatment. My radiologist showed me the treatment plan on her laptop. It was using 3D software, impressive how it showed the margins around the four PLNs, the boosts to those sites,,,

Good luck with your decision.

Kevin

[Horse12888]

I agree with all this. When I had a G9 and positive margins post RP, I had no problem whatsoever getting radiation, given the alternative (dying in agony). The most common SE is ED, which, while upsetting, is acceptable--again, given the alternative.

Btw, this is the first time I've ever seen the words "horror stories" associated with radiation; it's far more common to see them used to describe ADT.

And yes, the reason you're coming across horror stories is that you're looking in places where people with those stories happen to hang out. If I had had no complications from PCa treatment, there is no chance whatsoever that I'd be on this website.

[treedown]

I had 44 treatments and other than edema in my left calf from sitting in my work chair , no side effects at this time. However, I did start to sleep through most nights about a month after I finished. I was going 4 times a night during it though. This is just my story and not sure statistically how many people have bad SEs.. My RO was a good salesman as well so I jumped into it as quickly k as possible. Stay active, sleep and eat well.

[treedown]

Sorry i just realized mine was not salvage for recurrent.

[BMRboy]

I had 38 sessions of SRT almost three years ago after my PCA recurred and had little ill side effects. In fact, I found it rather exhilarating. I am still undetectable to date. It has been over 9 years since my RP.

Have no fear! Your best bet would be to find a radiation oncologist who specializes in PCA. He or she will know exactly what to do to minimize your side effects, as mine did.

Good luck.

[Shorter]

I had RALP a little over 2 years ago. It was a LIFE CHANGING EVENT I would NEVER REPEAT! Most men don't experience the aftereffect I have.

I finished 39 sessions of radiation a little over a week ago in addition to ADT. Like caltexman said, keeping my bladderfull during treatment was the hardest part for me. I have had some manageable diarrhea. My Radiation experience was a cake walk compared to RALP. I have experienced almost no negatives from the Lupron shot 3 months ago. I know some men do. The long term effects remain to be seen.

[RonnyBaby]

Beware of blanket statements and over-generalizations about treatment options.

I know there are potential bad side effects and some bad experiences - no doubt - depends on many factors - BUT - what if the treatment(s) in question would actually make a positive difference, would you throw it out without a second thought because someone shared something that didn't work out as well as they had been anticipating ?

I hope not.

I have my own biases and have had good / bad events - but I try to keep an open mind - knowing that I am no expert and anecdotal commentary can be wrong and damaging.

Get a professional (second ?) opinion and let them guide you in the treatment plan(s).

Radiation (I had that as my primary treatment) was no picnic, but I managed well and have

had minimal side effects from radiation (post - 2 years ago). It was not salvage, but, sometimes, that is the best / only choice when compared to the outcomes where drugs

may be another inferior option, with a track record that could have improved with a 'rad' component.

You can't be certain about a lot of things in life.

Wishing you the best on your journey ....

[Patrick-Turner]

In 2010, I had 70 Grey EBRT to PG + ADT as initial treatment for Pca because I had Gleason 9 and was inoperable after diagnosis in 2009

In 2016, my Psa went up to 5 rapidly after 6 years of suppression with more ADT.

My local Canberra doctor referred me to Melbourne doctors who had begun to do salvation RT to men who had increasing Psa from increase of Pca at RP site. But they also said they could do salvation radiation of 31Grey using Calypso SBRT where a patient had EBRT as initial therapy, as described by a Dr Shultz in American Journal of Clinical Medicine in 2011.

I was given a copy of the magazine article where Shultz alleged he had 47 cases of remission using the salvation method he described for patients who had EBRT as initial therapy.

Anyway, I had doubts about Shultz's claims and asked a lot of questions about the truth of the magazine article and I was forced to give my un-informed consent to proceed, KNOWING that it may not work at all, and Shultz's claims were just too good to be true, and that there were no mentions of total number of patients he'd treated or of any trials.

I was The First in Australia to get this type radiation method.

To make the Calypso method work, 3 beacons about 10mm long x 3mm dia were placed into PG by a large needle "applicator" through perineum while under anesthetic. These guided the direction of beam rays. A protective pad of 3cm dia x 1cm thick pad of hydrogel was sqirted into between PG and rectum to avoid rectum damage. After this minor surgery, I bled badly for 2 days and wondered why I was seeking such treatment from the experts, who had completely missed seeing that cutting any tissue in a PG which had been previously been given 70Grey radiation would cause bleeding, even if the cuts were only by needle injection, but needle must have been 4mm dia. And the bleeding could have caused further Pca spread of my Pca. None of this was acknowledged to be a problem.

Anyway, my bad bleeding stopped after 2 days in hospital stopped completely after another 10 days before the salvation RT went ahead. RT was done well by staff at hospital over 30 day time as my original RT had been done in my local hospital in 2010.

I was given Casodex for continual use before beginning the SRT.

Psa went down after to nadir of 0.4, then went up again to 6 in about 6 months after the SRT and it seemed to me the SRT had not worked at all, and Psa reduction was due to Casodex only. Later PsMa Ga68 scans proved I was right, and Shultz's claims were BS, and claim by hospital giving SRT that what they gave would definitely kill Pca in my PG were just BS. They told me BS to get me to spend the $$$ for the treatment. But I could never argue in a court that they had made false claims.

After returning from Melbourne hospital back home to Canberra, I had no side effects until a month later when 2 months of severe radiation colitis began and I became a gas propelled shit spraying device. So the protective gel had not worked very well either.

But I recovered well from all this, and continued to cycle 200km a week and perhaps the SRT had done something, but was it worth spending usd $9,000, the amount from my pocket after our Medicare funded me by usd $6,000? The Melbourne hospital did fund the cost of my accommodation for 31 days at a cheap but nice old lodge, saving me having to spend about $5,000 for a hotel.

I went in to have my knees replaced in early 2017 when Psa was 1.0, and then Psa went up, and PsMa scan showed PG still had Pca in it, and then I began Zytiga which kept Psa low but another PsMa scan showed many more mets, and wonder if they were caused by SRT in 2016. I'll never really know.

I had Zytiga which reduced Psa but got only 8 months Psa suppression, then had chemo, and any more local treatment was pointless. Chemo failed, then I had Lu177 last year, Psa went low, then back up to about 11 now, so more is needed, but I've had a total of 101Grey of EBRT + SBRT, plus effect of Lu177 at PG, and I just don't know yet if Pca at my PG is fully exterminated; one might light like to think so, but I have a continuing fight.

I'm still cycling 200km a week at 72yo, so despite treatment that repeatedly does not reduce my Pca to zero, I have had a good QOL.

I had read the horror stories that were described by ppl in Pca chat groups in about 2008. Many had far worse outcomes of side effects because lack of skill and knowledge among doctors was high and radiation technology was more primitive. But nobody was posting about what a wonderful cure they had after being treated. And they sure don't post here either.

Its another fine day here, I get give a blood sample for Psa test on way out for 60km cycle ride to have lunch across town.

I expect Psa of 15, and I see my local onco in 2 days. I can't do more except hope for best, and accept whatever treatment is offered me.

Patrick Turner.

[j-o-h-n]

Radiation - I've posted before so to those people who have already seen this please forgive me.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions.

However 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist.

Also I don't know if this would apply to you but guys here recommend "A PADDLE" to be inserted for protection of parts of your body. Make sure you ask your R.O. about the paddle and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

J-o-h-n Tuesday 06/16/2020 5:09 PM DST

[billy1950 in reply to j-o-h-n]

Hi j-o-h-n,

I am Wondering your thoughts i read your post above! my PSMA shows no cancer outside prostate. However, there is a BCR localized…

I had EBRT 15 years ago…MSK in NYC wants me on ADT and do salvage HD/brachytherapy in 3 months…per the genomic test the cancer is aggressive but localized…

I wonder your thoughts about having brachytherapy after initially having radiation. I am assuming that you have not gone through salvage treatment? Your urinary tract experience seemed challenging!

Thanks,

Billy

[immunity1]

I had adjuvant EBRT to prostate bed in early 2011 following RP with G9, pT3bN0M0. 64Gy (2gy/day). Manageable side effects but ? efficacy as PC returned after 3y. Followed then with ADT Lu177 etc etc. I would take it again in the same circumstances. R

[noahware]

I see a lot of input here that seems anecdotal, but inverted from the "horror stories" to be "success stories." Still anecdotal, right? Telling you MY experience or HIS experience may have no bearing on YOUR experience. My question would be, how can I weigh the real potential risks against any potential benefits? Are the potential benefits really real?

A paper from 2020 begins with this: "No clear consensus exists for managing biochemically recurrent prostate cancer after prostatectomy." It seems to me that if radiation was a sure thing so far as proven benefit, no article would begin with that sentence.

I would investigate salvage radiation stats and studies as they apply to specific sub-groups of the larger group of "men with BCR after RP" (based on age, PSA levels, doubling times, etc.) and also the stats for these sub-groups with regard to whether hormonal therapy was also done. See if you can figure out which sub-group(s) might most closely apply to you, and what your potential upsides are, in statistical terms of progression-free survival.

I don't think it's a simple choice of "do you want to live, or do you want to die?" as a few here have seemed to frame it. Radiation does not assure "cure" and avoidance of radiation does not assure "painful metastases and death." What might the stats tell you about YOU, and YOUR odds? Because stats as they apply to the ENTIRE heterogeneous group of men with PC may not tell you as much as you'd like to know.

Some PC is aggressive and some not. Personally, I would ask myself does it make sense to ME (as an individual, rather than as a statistical abstraction) to pursue radiation therapy, hormonal therapy, both, or neither. How long and how WELL might I expect to live under each of these four potential scenarios? How many OTHER types of treatment might I expect to pursue and endure down the road, and how soon might that be? How aggressive is MY cancer?

Dr. Willet Whitmore asked this question decades ago: “For a patient with prostate cancer, if treatment for cure is necessary, is it possible? If possible, is it necessary?” One group of researchers answered (about a decade ago) that "we have good evidence of treatment outcomes but poor evidence of treatment benefit. We cannot yet gauge benefit because we cannot identify the specific man for whom treatment is both necessary and sufficient."

Since I personally believe that the evidence points to prostate cancer being a systemic disease even when APPEARING localized, I would opt for systemic treatment (and ALSO pursue local treatments if and when dealing with localized symptoms). There is a small subset of MOs and urologists that doubt the existence of a well-defined survival or "curative" benefit either of radiation or of RP, over hormonal therapy alone, for many men.

Evidence has been around since the 1970s that points to PC being an inherently metastatic disease because of its typically slow doubling time and decades-long life cycle, and the frequent post-mortem discovery of prostate cancer cells in the bones of men who, when alive, showed no signs of clinically significant cancer.

The good news is, most men who probably DO have micro-metastases in their bones are lucky enough to NOT have highly aggressive or rapidly progressing micro-metastases, at least not until they are much older.

If there is a stat or study that shows a distinct and significant LONG TERM overall survival advantage for men doing ONLY radiation as opposed to men doing ONLY hormonal therapy, I would be interested in seeing how the conclusions were arrived at (and if variables were sufficiently controlled for, so as to show the advantage applied to relatively homogeneous sub-groups). But even if such stats exist, it remains impossible for most of us to know for sure which course of treatment is going to add more years, or how many (if any).

My take is, for many of us there is no hurry to rush into a particular mode of treatment. Our cancers are mostly slow-growing. But if early action IS GOING to be taken, my opinion is that early hormonal therapy makes more sense than early surgery or early radiation.

[SmpQuindio]

I had an open rp 3/2016.. 4+3.. T3aN0M0...my PSA started creeping up slowly until it hit 0.46 by January 2020. I started salvage radiation on Feb 10 2020 and my last session was April 1. The worst part was waiting for my updated PSA which is now 0.15. (No ADT). The treatment was uneventful.For about a month after the end of treatment I still had to urinate frequently and it did do a little rectal burning.. but nothing that ruined my daily life. I continued to go to the gym until it closed in the middle of march. For whatever slight inconvenience I experienced it was worth it if I avoid chemical reoccurrence and ADT. I will be 61 next week.. otherwise is good health. Best of luck ..