Greetings! I'm new to the forum but certainly not new to prostate cancer.
I was diagnosed in November 2010 (PSA 5.0, Gleason 3+3) at the age of 52. In January 2011, I had my prostate removed and it came out cleanly—negative margins, no seminal vesicle or lymph node involvement, nothing. My Gleason was upgraded to 3+4, and one nerve bundle was removed.
On the whole, my side effects from the surgery have been minimal. I'm 98% "dry" in the incontinence department (a good sneeze or cough may have me leak a few drops) and, surprisingly, with one nerve bundle, I can achieve an erection that's in the 70%-90% range without any chemical or mechanical assistance.
My post-surgery PSAs were undetectable for 54 months when, in September 2015, my first detectable reading came back at 0.05 ng/ml. It bounced around a little (0.04 to 0.08 back to 0.05 in September 2016. After that, however, it steadily climbed to 0.10 in December 2017.
When I met with my urologist in December, he suggested we start thinking about salvage radiation therapy if my PSA continues to climb. He suggested we could start as early as my PSA being in the 0.15 range, but not later than it hitting 0.50. My next PSA test is in April.
I'm pretty familiar with the short-term side effects of salvage radiation therapy. I would love to hear from those of you who are 2 or 3 years out from your salvage radiation with respect to any long-term side effects that you're experiencing, especially with regards to incontinence, strictures, ED, and bowel control.
Thanks in advance!
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dans_journey
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Welcome to the group. After surgery I had 38 rounds of radiation that ended in October 2016. So it has not yet been two years. The thing I noticed around 1.5 years out are the occasional blood in the stools and the need to have a lot bowl movements every day (over 10). Also, my insides where they zapped me often feels warm, or stirred up. None of these side effects are bad enough to change my mind about having radiation. The key is to go with a radiologist and technicians that have done thousands of these procedures.
Have you discussed hormonal therapy? You are a perfect candidate for the Stampede/Latitude trial therapy. They put you on two hormonal drugs, Lupron and Zytiga (with prednisone) at the same time. It has shown remarkable results in delaying increase in PSA and for extension of life. Also, there is a documented synergistic effect for having radiation while you are on hormonal therapy.
Again, welcome! You will not find a better group of men and women, all warriors fighting this disease than here. You are now part of our family. You will never be alone again. We are all pulling and praying for you. After all, people like us we have to stick together!
Thanks for the welcome and for sharing your details.
Since all of my post surgery PSAs were going so well for so long, I've only been dealing with a urologist. But after talking to him in December, I'm going to ask for a referral to a radiation oncologist when I have my next PSA test in April. We'll see what he or she has to say.
My surgeon was up-front with me before the surgery, telling me I had a 20% chance of recurrence. Now, 7+ years later, I really want to understand the risks of the side effects of salvage treatment and weigh them against the likelihood of success of that treatment.
The one thing I've learned in 7 years of dealing with this and researching as I have, is that there is no one right answer out there for any of us. We all have to be comfortable with what's right for us based on our research of available information at the time we make a decision.
I think that one approach to your situation will be to wait until the PSA is around 0.3 and then perform a Gallium 68 PSMA PET/CT study to determine with precision where the cancer is so they can plan the radiotherapy correctly. Without this study they miss something around 42% to 57% of the time.
There are several clinical trials for Ga68 PSMA PET/CT. Please search at clinicaltrials.gov for Galiium 68 PSMA and prostate cancer.
My salvage radiotherapy did not make my incontinence worse but it did affect the sexual function, no immediately but in 1 year or so. It did not cure the cancer either.
Radiation alone is probably the treatment that will affect less your sexual functioning, since androgen deprivation therapy will certainly affect it negatively. Besides radiotherapy if done correctly may be curative in your situation.
Thanks for your reply and your suggestion. Conceptually, I couldn't agree with you more. I am really reluctant to zap my prostate bed not knowing whether we're zapping the correct location. I've seen the articles on the PSMA PET scans, and they are promising. On the flip side, I've also seen the studies that show that "very early salvage therapy" (PSA 0.01-0.2) has much better outcomes than if delaying to higher PSA levels. Of course, those PSA levels are below what the PET scans will pick up.
Then I've seen studies like Freedland's 2005 study that shows, given my time to relapse, my Gleason score, and my PSA doubling time, I'll have a 94% chance of still being around in 15 years without any additional treatment.
At UCLA they will do the PET/CT with GA 68 PSMA with a PSA of 0.2.
No other PET/CT tracer should be used with a PSA of 0.2 (no sensitivity enough).
If I have to do everything again I will not have radiotherapy without a PET/CT scan.
I will risk to have a slightly higher PSA (0.3 instead of 0.2) at radiotherapy instead of risking to have the radiotherapy done without a PET/CT study.
Do not forget that in the study you refer to they compared the range of 0.2 to 0.5 vs <0.2 Nobody knows if having a PSA 0.3 makes any difference when compare with a PSA of <0.2 in the outcome of the treatment. There are no data.
You seem to misunderstand the purpose of a PET scan in the recurrent situation. The purpose is NOT to guide the radiation treatment, but to RULE OUT distant metastases (which would obviate the need for radiation therapy). Unless the PSADT is very rapid, the ability of any PET scan to detect metastases is very low when the PSA is only 0.2. See this link:
In the locoregional (pelvic) area, PET scans are useless when met size is less than 4 mm. The idea of early salvage is to destroy those very small metastases while the cancer is still in the locoregional area. For that reason, the early salvage radiation is not metastasis-directed by PET scan, but rather covers the entire area so that all tumors, small and large are destroyed.
The only reason to change the plan is if distant metastases are discovered. Otherwise, the plan wasn't good enough to begin with. You are right that the treated pelvic LN area is often not wide enough. MSK has been advocating enlarging the treatment area and many ROs are following suit:
But none of that changes the fact that one has to radiate what one can't see as well as what can see. For men with low PSA, mets will not be visible with even the best scans. The best scan for finding cancerous LNs would be the Combidex scan, only available at Radboud University in Nijmegen, Holland. But even that one cannot find mets smaller than 2 mm:
As you will see if you read the article that Dan cited, it is a dangerous game to wait for the PSA to rise to a level where a PET or MRi can detect it. By that time, the cancer may be systemic and incurable. Certainly, if one has PERSISTENT PSA above 0.2 ng/ml, it makes sense to do a PSMA-based scan to look for distant mets which would obviate the need for SRT, but to wait for the PSA to rise until those mets become detectable is unconscionable.
I have seen them all, thanks. Not one advocates delaying SRT by waiting for PSA to rise so the met will be big enough to be detected. We want to treat while they are small and before they have a chance to spawn.
Thanks for weighing in on this discussion. I've been following your contributions on the New Prostate Cancer InfoLink website for some time now. It's a great resource to the newly diagnosed and for those of us who are further down the path.
For me, I see tremendous value in being able to rule out distant metastases with a PET scan because I really don't want to undergo SRT to my prostatic bed if the cancer has already spread. Why risk the permanent side effects for absolutely no gain?
The amount of conflicting information about SRT out there is enough to drive a patient nuts.
Even in Walsh's book, he writes, “men with Gleason scores of 7 or lower, no cancer found in their seminal vesicles and lymph nodes, and increases in PSA several years after surgery were more likely to have a local recurrence of cancer—which means their cancer may still be cured with external-beam radiation to the prostate bed, where some residual cancer cells may be hiding.” (Walsh, 2nd ed., p. 381) I fit all of those requirements and would be a candidate for SRT.
On the very next page in Walsh, however, it states, “Radiation was also not likely to help men who had negative surgical margins. This is logical…because patients with negative margins whose PSA persists after surgery are more likely to have residual disease outside the prostatic bed, as opposed to those whose margins were positive at surgery, where disease is likely to remain in the area (and thus can be treated with radiation).” I had negative margins.
I recall reading somewhere (I'd have to dig to find the source) that generally speaking, for patients with my pathology recurrence is local about 80% of the time, so you should zap the prostatic bed (Gleason 3+4; pT2c, N0, M0, no ECE, SVI, LNI; PSADT> 15 months, time to first detectable PSA = 54 months; My PSA trend: dansjourney2014.files.wordp....
But then I read that there's a 30%-50% chance of being progression free six years after SRT. So if we're saying that 80% of the time the cancer is local and should respond to SRT, but the treatment fails 50%-70% of the time, which is right?
For me, I tend to put a little more weight on the latter and not the former.
Of course, as you wrote (first link in my initial response to Raul), recent studies show that starting SRT at a very early stage (PSA < 0.2) is beneficial. Are there any data yet that show progression-free statistics for those starting SRT at those very early or early levels? Unless I'm missing something, what you presented appears to be just a relative comparison between SRT start times, and doesn't show the overall progression-free success rate of SRT at those various PSA levels.
Finally, then you throw things like Pound's and Freedland's study (second link in my original response) on top of all this, and it makes me wonder whether I should do anything at all other than enjoy a relatively side-effect free life for the next 10-15 years. (If I live an additional 15 years, I will have outlived both of my parents and 3 of 4 grandparents, and we all know that none of us are getting out of here alive.)
I know I'm preaching to the choir. Just venting for now, but would value any insights on the research that's out there and its current validity (e.g., the Pound study was done in 1999 and the Freedland study in 2005—still applicable? Or has more recent research superseded their efforts?)
There are no data showing that to wait to a PSA of 0.2 has a worst outcome than doing the RT with a PSA <0.2.
In the blog article you mentioned, the ranges the use to compare patients' outcome is <0.2 vs 0.2-0.5 and > 0.5.
In the actual summary of the article by Ahmed Abugharib the reduction in mortality when radiotherapy is done with PSA <0.2 is 4% if compared with the group with a PSA range of 0.2-0.5.
We should not forget that this article is a retrospective study and multi institutional. We are basing our discussion in a retrospective study,!!! The scientific value of this type of studies is not the same than a prospective randomized study.
In this study patients were collected since 1986 when equipment and procedures for diagnosis, PSA measures and radiotherapy were complete different than in recent times.
They do not mention the characteristics of the groups ( <0.2, 0.2-05 etc), so we do not know if these groups were comparable in age, Gleasons score, surgical margins, number of positive lymph nodes just to mention a few variables.
You do not have to wait until the PSA is 0.5 or higher since you can get a GA 68 PSMA PET/CT done with a PSA of 0.2 and be sure there are not distant metastasis and if there are local lymph nodes metastasis in the pelvis they are going to be included in the radiation planning.
I agree with you that randomized clinical trials are always preferred, and we have 3 that show that adjuvant radiation is better than a wait and see approach. There are problems with all 3, and we await the outcomes in several years of a few more RCTs that may provide further clarification. Meanwhile, we have to make judgments based on what we have. The Hwang et al. study I cited is the best I've seen so far, and it does indeed confirm that FOR MATCHED PATIENTS treatment before PSA reaches 0.2 has better outcomes.
Again, the study by Hwang is a retrospective study done by reviewing charts from 1986 to 2013.
Even when matching patients this is not a prospective study and to me does not reach the scientific level needed to change medical norms.
Besides it was not done with all patients in possible BCR and it was done with a population of T3N0 patients only, so whatever the findings, they apply only to that population.
Retrospective studies are preliminary studies and they should be confirmed by prospective studies before we start changing the treatment of patients.
The meta analysis of the 3 prospective studies you mentioned did not show a survival advantage according to Hwang et al..
The Hwang study did NOT limit itself to men with T3. All patients had adverse pathology, however.
SWOG S8794 certainly did show a survival advantage to adjuvant RT over a wait-and-see approach. Based on that, the AUA/ASTRO guidelines since the three RCTs on the subject has been to provide adjuvant radiation rather than wait. No one want to do that. So all the retrospective studies since then have been to find out what is the earliest PSA that reliably predicts failure, so that we don't overtreat by treating too soon, but treat soon enough to effect a cure.
While I would like to live in a world where all kinds of money is spent on RCTs and patients have perfect info with which to make a decision, that is not the real world. Researchers have come to a general agreement about what constitutes good evidence. Levels of evidence range from (1) RCTs to (5) professional opinions. On top of that, professional organizations (like AUA, ASTRO, NCCN) grade the evidence on both quantity and quality to arrive at their guidelines and the strength those guidelines have in dictating practice. You would be amazed at the wide range of practices that have never been shown in an RCT.
The Hwang study is notable, not only because of the prestigious institutions (Massachusetts General, Cleveland Clinic, University of Michigan, Duke University, Washington University, Mayo Clinic, University of Chicago, University of Miami, Virginia Commonwealth University, and Thomas Jefferson University) that contributed data, but because of the care they took in analyzing the data. It constitutes level 2a evidence and does indeed inform the practice at top institutions. I know many top ROs, and they all advocate salvage radiation for men with adverse pathology while the PSA is below 0.1 but above 0.03. For men without adverse pathology, they all want to see a convincing pattern of PSA rises.
The gulf between ROs and Uros about when to treat is large. ROs are the ones who actually treat and follow patients who need salvage radiation. They know the heartbreak of treating too late. The Uro's job is pretty much over after surgery, and is mostly limited to treating side effects of surgery. perhaps to justify the surgery gone wrong, they tell patients to wait. I make every effort to get patients talking to ROs rather than Uros as soon as the PSA pattern becomes convincing and over 0.03 ng/ml. They don't always have to treat as low as that (although sometimes they should), but they should be in discussions and considering all the pros and cons.
I read a lot of those studies as well. The data is conflicting. I've seen numbers from 70%+ success to don't even try, not worth it. Logically, if your margins are negative, why would it be in the bed vs distant. But there a number of cases where that happened and people were treated. A number of studies are dated, with new equipment and possible ADT combination, not available at the time.
For me it is a coin flip, but one that offers a potential 'curative' road or a long term remission.
The alternative, is your doubling time stays very long and it could buy some more years. But the PCa will remain and could become more aggressive.
The whole thing stinks, esp after 54 months of being in the clear.
What I am against is deferring therapy to wait for a positive PET scan - I don't think any sane RO would advocate that. In a recent study, 12 year freedom from biochemical failure increased from 43% among men who waited for PSA to rise to 0.2 to 69% among men who were treated before that PSA level was reached;
If you want to see a nomogram to help you understand whether SRT is likely to be successful for you, this one is probably the best (be careful about using Wals's book -it is hopelessly out of date):
You wrote, "Are there any data yet that show progression-free statistics for those starting SRT at those very early or early levels? Unless I'm missing something, what you presented appears to be just a relative comparison between SRT start times, and doesn't show the overall progression-free success rate of SRT at those various PSA levels." The Abugharib study you cited does just that. They looked at 4 measures of progression: freedom from biochemical recurrence (PSA> 0.2 ng/ml) after SRT, freedom from starting salvage, life-long androgen deprivation therapy (ADT) after SRT, freedom from detectable metastases after SRT, and prostate cancer specific survival. On all measures, those who were treated while their PSA was below 0.2 had MUCH better outcomes (twice as good!) compared to those who weren't treated until PSA was in the 0.2-0.4 range, and four times as good as those treated when PSA exceeded 0.05.
As for being around in 15 years, that is undoubtedly true. And if you have comorbidities that might reduce your life expectancy to only 15 years, that might be an important consideration. Living with the systemic effects of cancer gets progressively harder, as I can assure you from painful experience. You get a window of opportunity in which a cure may be possible.
I didn't take it that you were against PET scans altogether, and I had seen that nomogram before. My score would come in 59-125 depending on ADT/no ADT or hi or low radiation dosage, putting my probability of SRT success in the 60%-80% range.
On the Abugharib study, I did see the four measures that they used, but I did see the improvements compared between each PSA range (the twice as effective and the four times as effective), but what I didn't see is the actual results for each of those items.
For example's sake, if current studies show that only 30% of SRT patients are progression free at 6 years after SRT, how does that translate for this study. Let's assume that the 30% number is from those who started SRT with a PSA of 0.5 or more. Does that mean that, according to the Abugharib study, 60% those who start SRT with their PSA between 0.2 and 0.5 will be progression free at 6 years? And 90% of those who start SRT with a PSA under 0.2 will be progression free at 6 years?
I hope that makes sense. I guess what I'm searching for is the baseline starting point. I get that one is 2 times better, and the other is 4 times better, but better than what?
And, yes, I take Walsh with more than a grain of salt. (Although I saw on the JH website that they had a teaser for the 4th edition of the book. I haven't seen it on Amazon yet, but it may be out soon. It will be interesting to see the updates.) As a general rule, I look at the currency of the articles that I read knowing how rapidly things are changing.
I don't understand how the baseline values affect your decision, since you are looking at the relative advantage of one approach over another. But I can oblige: They wrote:
"Increasing detectable pre-SRT PSA (0.01-0.2, 0.2-0.5, >0.5 ng/mL) predicted for worse 10-year biochemical recurrence-free survival (62%, 44%, and 27%, p<0.001), Freedom from Salvage ADT (77%, 66%, and 49%, p<0.001), distant metastasis free survival (86%, 79%, and 66%, p<0.001) and prostate cancer specific survival (93%, 89%, and 80%, p=0.001). On multivariable analysis, ‘early’ SRT (PSA >0.2-0.5 ng/mL) was associated with a 2-fold increase in biochemical failure, use of salvage ADT, and distant metastases compared to ‘very early’ SRT (0.01-0.2 ng/mL)."
Baseline values should be an important part of the discussion and the decision-making process. For argument's sake—and I'm using extreme made up numbers here to prove my point—let's assume a treatment option had a 5% success rate and the study proved a four-fold increase so now you had a 20% success rate. That, to me, is still a sucky (technical term) treatment option that I would have to consider long and hard before electing to subject myself to it, especially if there's risk of having life-long side effects from it that adversely impact my quality of life.
My surgeon was very direct with me prior to the surgery, telling me that there was a 20% chance that the cancer would come back. I landed in that 20%. As a result, I'm more than skittish about pursuing a treatment option that has a 20%, 30%, or 40% chance of putting me right back where I started, only now with life-limiting side effects. And, yes, I understand that the further down the path I go, the larger the risks are and that there are no guarantees. I get it.
I'll say, too, that I don't necessarily subscribe to the theory that we have to do all that we can to prolong our lives at all costs. If the treatment has you curled up in a ball with depression and mood swings; tied to a toilet because you have to have a dozen bowel movements a day; either catheterized or running to the ER because of strictures blocking urinary flow; unable to perform sexually, is that really living? Or is that merely existing? Do you exist for 20 years because the treatments are keeping you alive, or do you LIVE for 10 years doing the things that you enjoy for as long as you can? None of us are getting out of here alive, so if we have some control in how we spend our remaining time, I'm all for it. (If I live another 13 years, I will have out-lived both of my parents and 3 of my 4 grandparents. I'd say that's pretty decent.)
I hope that you now understand and respect that I'm in an extraordinarily difficult position at the moment—like so many of my fellow patients—and all I'm trying to do is 1) come to terms in my own mind with where my personal balance point is between treatment side effects, quantity of life, and quality of life, and, once I have that figured out, 2) determine the best path to get there by assessing the risks as best I can knowing there are no guarantees.
My next project will be to try to find as many studies as I can that report on the long-term side effects of SRT. What percent of men who had an RP and subsequent SRT are affected and to what degree are they affected in the areas of urinary control, bowel control, and sexual function? Is it merely a nuisance, or is it a complete loss of function? If you know of anything out there along those lines, please send it my way.
I misunderstood, I thought you were looking at the relative advantage/disadvantage of treating earlier rather than later. I now understand that you are trying to assess the survival advantage of going for the cure at all, which is a totally different question, and one not at all addressed in that study.
Of course QOL is important, but you seem to be letting your fears run wild and blowing the risk out of proportion. There are definitely side effects to salvage radiation, but compared to the potential side effects of surgery, they are relatively mild and almost always transient. There are also many side effects to living with cancer that grow progressively worse. When people say that most people with prostate cancer die of something else, they are missing the fact that prostate cancer drives lethal comorbidities.
In fact, just today I came across the following study that showed that those who had A/SRT had only a 4% higher overall incontinence rate, and only a 1% higher rate for severe incontinence (>3 pads/24 h) compared to matched RP-only patients. RP + A/SRT was associated with an 18% lower rate of potency compared to RP alone, but that was related to how soon after RP they had the RT. In most studies, bowel function detriments are small and return to baseline within the first year. With your long recovery period after RP, the additional risk should be small.
Thanks for sharing that article, Allen. It's helpful and does put some of those fears to rest. But you know me, I'd like to see more.
I'd love it if researchers shared the distribution of their data when reporting out. I'm going to make up numbers again for illustrative purposes, but let's use the 4% higher incontinence rate as an example. How was that derived? If there were 100 patients in in the survey, did 80 of them report no change in incontinence and 20 of them report a 20% increase in incontinence to get an average 4% increase? If so, it would suck to be in the 20% group (been there, done that, don't want to do it again). But if only 2 of the 100 had a 20% increase in incontinence and all the rest had a 0% to 5% increase, that would tell a completely different story.
So yes, my fears are running a tad rampant at the moment, hence me trying to collect all of this information from reliable, reputable sources to allay those fears. But then I read patient stories like the very first response to this thread—10+ bowel movements a day. It may or may not be a nuisance to him, but I would consider that to be a substantial impact on my quality of life and something that I would want to avoid.
I also recognize that being in these online support forums is a bit of a double-edged sword, too. You can learn much from people like yourself, Raul80, and other patients, but it can also feed your fears when you read of the complications that so many men are dealing with. What we don't know is how many men are outside of the forums who have been successfully treated or who have had minimal lasting side effects. Is it five men outside the forum for every one man in it? Ten to one? Twenty to one? Again, it goes back to that distribution of data.
At this point, I'll continue to research and work on controlling my legitimate fears before my next PSA test and doctor's visit in April. Some days I'll succeed better than others.
They are measuring INCIDENCE rates of incontinence and also degree of incontinence. The 4% higher rate is in the incidence of incontinence of at least 1 pad. The 1% higher rate is in the incidence of incontinence of at least 3 pads. I'm sorry - I've read so many studies that I forget to explain such things.
There is a cognitive bias that we all suffer from, called the "availability heuristic." This means that we overemphasize things like the anecdotes we read on these pages, and undervalue statistics. We overvalue especially those things that have emotional impact - like the suffering of someone we know. Even though I've worked with statistics professionally for over 20 years, I still catch myself doing it. What you have to do is remind yourself that each of the 13,150 men in that study had a story to tell. We also have to acknowledge that, while population probabilities are a best-guess at our outcomes, statistics never predict for individuals.
I've found the best way to control my fear is, paradoxically, to accept it. You seem well on your way to doing that.
Your PSA evolution even when it is increasing it has a PSADT around 1 year or more, so you have time to research SRT and make a final decision consulting with your doctors.
I was in the same situation and it took me 1 year to make the decision and I consulted with 3 different doctors in Boston, San Diego and San Francisco. The factor that convinced me to do it was that it can be curative and the only way to know it is to get it done.
When to do it it is the point of discussion.
The article:
Very Early Salvage Radiotherapy Improves Distant
Metastasis-Free Survival
Ahmed Abugharib,* William C. Jackson,* Vasu Tumati, Robert T. Dess, Jae Y. Lee,
Shuang G. Zhao,† Moaaz Soliman, Zachary S. Zumsteg, Rohit Mehra, Felix Y. Feng,‡
Todd M. Morgan,§,k Neil Desai and Daniel E. Sprattk,
it is a retrospective study with 65% of the patients treated before 2005 (1986 to 2005). This was done by chart revue when electronic medical records did not exist. It is not the kind of study (prospective study, ideally randomized) that is used to set norms of treatment in medicine. I believe this is one of the reason that BCR is still define at a PSA of 0.2 or greater.
I wonder if patients with PSA<0.2 may have done better in this study because some of them may have not had a BCR.
I also wonder when those patients with a PSA< 0.2 were treated in the close to 30 years of the study. I think that the patient in the 80's, 90's and earlier 2000's were treated with higher PSA than the more recent patients. The more recent patients (probably treated with lower PSAs) received the benefit of better techniques and equipment.
Thanks, Raul. You raise some interesting points that I hadn't thought of before.
I agree that I have time to come to a decision point on this. If the predictive powers of my spiffy little spreadsheet are accurate (they were the last cycle), my next PSA in April should come in around 0.115. We'll see what the real number is in a few weeks...
I chuckled at your comment about BCR being defined at 0.2 ng/ml. I came across a paper where the author had reviewed 145 other studies on BCR and came away with 53 unique definitions of BCR for those who had a prostatectomy. (For those who had radiation, 208 papers showed 99 different definitions of BCR.)
That certainly makes it a challenge for someone like me who likes to put things into a spreadsheet and have definitive answers. Nothing in prostate cancer is definitive! Oh well. I've adapted.
Just curious if you have any thoughts on the Freedland study I mentioned earlier? The first link is a summary; the second is the full study.
My husband was also diagnosed Nov 2010 with a psa of 6.4 at age 51
After Prostatectomy gleason 3+4 positive margins. PSA undetectable for almost 3 years. He started radiation to prostate bed (37 total) after a psa increase of 0.5 in 2014.
He had fatigue symptoms, but was able to work everyday after each treatment. That was pretty much the only side effect he had from radiation until 2017. Due to a PSA increase of 8.7 in Sep 2017.
I was 49 with a PSA of 12, then after prostatectomy discovered G9, LN0, SVI extensive and EPE. PSA undetectable <0.01 for 6 mos. after prostatectomy. Within 2.5 years my PSA climbed to 0.18. Had 38 radiation treatments to prostate bed. I am a runner and ran through all the 7 weeks of radiation, helped tremendously with fatigue. The last 2 weeks of radiation fatigue was pretty tough but got through it. 1.5 years out, erections fine, no additional incontinence and bowels are normal. PSA now 0.024 still undetectable...but we’ll see for how long. Would I do SRT again, in a heart beat! I chose no ADT prior to and along with radiation. ADT is a personal choice and I won’t comment on that. If anything I do get hemorrhoids from time to time if fiber lacks in my diet. I only eat fish 2-3 times per week otherwise stick to plant based diets and take a handful of supplements every morning. I continue to weight train 3 days a week and run 20-25 miles per week. You can also search some of my previous posts on the experience of going through radiation and my decision making process. Good luck with your decision!
Thanks for your reply. I'm glad that things have worked out so well for you.
When my doctor talked about SRT, he was inclined not to start ADT given my stats, and I would probably follow the same path as you. Yes, there are recent studies that show having ADT in conjunction with SRT helps improve the outcomes of SRT, but at what cost?
I'm trying to find that balance between quality of life versus quantity of life that will work for me, and I'm not sure I'm there yet. I've heard far too many guys on ADT say things like, "the medicine that's saving my life is killing me" or "I"m just a shell of the person I once was."
Given that Patrick Walsh wrote in his book (2nd ed., p. 479):
"Whether a man is treated with hormonal therapy immediately as soon as the diagnosis of advanced disease is made, or his doctor waits until the man has signs of progression and then begins treatment, we believe—and study after study proves—that survival is exactly the same. There is no compelling evidence that any kind of hormonal therapy works better earlier than later...."
I believe the 4th edition of his book is about to be released (saw it teased on the Johns Hopkins website), so we'll see if he has a change of tune with some of the more recent research. In the interim, I'm in no hurry to start ADT and suffer its side effects for a longer period of time when the end result is the same.
My RP of 14 years ago failed immediately (PSA 0.3; & 0.8 three months later).
I had salvage radiation which ended 13 years ago. It isn't done with curative intent, but is said to improve survival, on average. My PSA, once again, dipped to 0.3; & again 0.8 three months later.)
I had horrible radiation proctitis compared to many who sail through it, but it does gradually get better. I no longer need to know the location of every accessible toilet in the county.
I suffered no effect on bladder function.
Everything I have read suggests that getting it done sooner is better. I have seen PSA guidelines, but our cancer cells don't all produce at the same rate. My PSA was always low (0.8 when a nodule was found), so 0.8 was a high number for me.
Erections disappeared with the surgery, so I can't speak to the additional damage that radiation might do.
You ask about "2 or 3 years out from your salvage radiation". Life was good & continues to be 10 years further out.
Thanks for sharing your story. It's helpful to have first-hand experiences, but I also have dealt with this long enough to know that each and every individual will react differently to the treatment. I'm just trying to gauge how many people are at what point on the long-term side effect spectrum.
My doctor suggested that I definitely not wait until my PSA is above 0.5 to start SRT if I choose to do so.
Thanks for the link. I have actually played around with that nomogram before. It's helpful to a data-driven guy like me. And, believe me, after having my PSA return after surgery, I know all too well that nothing is guaranteed. That's why I'm so skittish about moving into this next phase. If I'm going to risk subjecting myself to life-altering side effects are, I want to know the likelihood of my "rewards" will be.
Yeah. I hear ya. I got a reoccurrence 18 months after my RP. And I was supposed to have “slow growing” stuff. So this never even occurred to me as an option. My issue is my doubling time is fast so taking the 68% chance. Not optimal. But best bet
Alternative is systemic treatment via ADT or hopefully some new immunotherapy. But SRT is last good shot at curative or durable remission
39 sessions of Radiation were a breeze back in March/April 2005. No incontinence, but no more woodies due to RPD. However stricture of left urinary tract and left "renal parenchymal atrophy" showed up via my MANY CTscans. My urologist can't explain why but it may be from radiation or from many kidney stones I've passed (also had them on my right side). In a couple of weeks doc will operate due to a stricture where my left ureter meets my bladder. I've had many stents implanted an removed from my left urinary tract without a problem (no pain ever). From January 2008 to December 2011, 18 "IN and OUT" stents. Let me emphasize that the ins and out of the stents were painless.
Thanks, John. I had a kidney stone misadventure back in 2005 where the stone got stuck in the ureter between my kidney and bladder. They had to go up and get it and left a stent in to prevent inflammation from the stone closing off the ureter. When they went up for the stone, I was out under general anesthesia. (Coincidentally, my next door neighbor was the anesthesiologist on call that day—the joys of living in a town of 6,000 people at the time! Nothing like your neighbor seeing all that the good Lord gave you while you're out like a light. He was cool about it for our first backyard conversation.)
I wasn't knocked out when the urologist went up to get the stent after a week or so. I was in full panic mode, but it, as you said, was a non-issue.
My husband had no effects from his 30 some days of radiation but he was already impotent from RP. He worked right thru it.
He has always had to pee often and urgently. However, we did not take the advice of Dr. Gordon Grado to do cryotherapy to the prostate bed shortly after EBRT and regret doing so. So there was failure within 5 years.
Dan - I ran across this today after reading a posting which details a poor prognosis for sRT for many men. I had surgery in Dec., 2002 - my results were... no seminal vesicle involvement; no lymph node involvement; negative margins; but, capsular penetration, and a T3a staging. I experienced 12 years of being "less than" .04 - then, three years ago, it began to climb....06; .08; .1 - and, for three years, see-sawed between .12 and .18. This December, I reached .2 - and, had sRT right away. Walsh told me it was still a good option...and, my RO said because the number was low, he doesn't expect me to die from this; he doesn't expect "it" to return...has bet me a beer I'll live to 80, and I am 65 now. But, the posting, and reading this LONG exchange between you and "Tall Allen" has me worried...
Thanks for your insights. I actually just got my latest PSA results last night. They're up from 0.10 in December to 0.11 this week. It's a slow, steady climb. If there's got to be a climb, I like the slow, steady part.
You can see a chart of my PSA history on my blog here:
Right now, I haven't done anything but monitor every four months. However, in December, my urologist told me that if we start getting into the 0.15 range, we need to start thinking about SRT. When I see him on the 19th, we'll see what his insights are given this continued trend, but I'm going to ask for a referral to an RO to get that discussion going.
As you can probably tell from this thread, my biggest concern (unfounded or not) is going through SRT not knowing if we're in fact radiating where those little buggers are, and risking long-term, life altering side effects that impact quality of life with only a 30%-50% chance of SRT yielding no evidence of disease 6 years later.
I know the chances of these long-term QoL side effects are relatively low 5%-10%, but so was the chance of this crap coming back after my prostate coming out cleanly. Call me skittish.
I empathize completely with your thoughts, anxiety, etc. on this issue. I went through a similar process, ultimately visiting RO's on my own - I refer myself to the two major cancer centers in town (Boise still is not a huge metropolis). It is frustrating to learn.... there is no way to identify where the damn thing is -I asked one RO - so, we're shooting in the dark? Yeah, kind of... sigh - I was so reluctant to do radiation until I wrote to Patrick Walsh, who told me don't wait - I was a good candidate, and I would regret not trying to cure myself, of gain more years. Just last night, I wrote to Dr. Catalona (Northwest University - rather renown Pca guy - great website) about the discussion of cure rate based on the article discussed - he says, cure rate is still about 75% - my RO says 75 % is "all comers" and my probability is more like 80-85%. Yes, he could be full of shit, and maybe he is - but... he's done 1200 prostate cases, so he knows something. My wife, a nurse practitioner, worked with him years ago at another hospital, while she established a cancer-patient navigator system - she holds him in high regard. I selected him after a second round of consultations, based on yet another factor - the machine and software - his center uses Varian True Beam, and the software is very advanced, which reduces side effects.
I felt, after surgery and 12 years, I was going to make it, get away with it - but, 15 years seems to be the magic number, and 12 for radiation. I, too, am skittish, and radiation results are not only iffy, but take a while to manifest - PSA goes up for a while, takes months or years to reach a nadir - and, the nadir is not as low as surgery's... 0.05... so, it's tricky.
BTW, I admire your blog and your careful plotting on a graph of your PSA and changes.
I wish you luck, hope you stay in touch with us all - take care.
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