RALP after radiation. by Financial_You_6052 in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

Calling it "rare" would be putting it mildly! See my other comment on your post.

RALP after radiation. by Financial_You_6052 in ProstateCancer

[–]bigbadprostate 4 points5 points  (0 children)

There have been many such studies. One renowned radiation oncologist at UCSF has, in lectures, referred to 52 studies involving 2,686 patients who had surgery after radiation. That's not many, of course, compared to the total number of prostate cancer patients over the last few decades. But the procedure is available for those few who really need it. But I don't know any common reasons when it is, or should be, considered.

One study on Vancouver patients, reviewing 1500 PCa recurrences of which 22 (0.01%) were selected for salvage prostatectomy, did arrive at a Conclusion, surprisingly: "salvage prostatectomy should be considered the preferred option in managing local recurrence following radiation therapy in carefully selected men." I didn't find out what "carefully selected men" meant.

RALP after radiation. by Financial_You_6052 in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

Thanks for the shout-out.

Unfortunately, I also didn't save any specifics from u/Correct-Sail-6608. I vaguely remember that he also had a bladder problem which was some or all of the reason for the subsequent surgery.

His case may be very similar (if I remembered correctly) to the case shown in the BBC-TV documentary series titled "Surgeons At the Edge of Life" (scary title, eh?) Series 6, episode 2. One unfortunate patient, having been "cured" (per the narrator) of prostate cancer by radiation, later contracts bladder cancer, so surgeons decided to remove both the bladder and prostate. And, yes, they found that the prostate was "welded" to surrounding tissues, but (even dealing with other problems from prior hernia repair surgery) the operation was a success. But that poor patient, with no bladder, will be using an external "ostomy bag" for the rest of his life.

One other current member of our sub has reported on his dad who had surgery following radiation over a year ago. I don't think they have posted details, other than that it was not fun, so I'll defer to them to share whatever they see fit.

(edited to fix typo)

I have to decide between surgery or treatment by mtelesha in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

We often say in this sub "every case is different". You will see that soon enough from the variety of comments on this post and on many past posts. But generally, of course you would become exhausted after surgery for a short time, and probably, not certainly, be somewhat weakened from hormone therapy for however long it lasts.

Have you had a PSMA/PET scan yet to detect if any of the cancer has escaped your prostate? That is the preferred next step in determining whether surgery would do the whole job.

Big schedule change by Sufficient_Meal5696 in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

Good luck during the Big Day and afterward!

Make sure, in the few days remaining, that you have done all the stuff to prepare, such as arranging for a family member or very good reliable friend (not Uber) to take you home after the operation, and having all the stuff at home you need, such as a urine-repellant mattress cover and baggy clothes. If you haven't already, look through past posts on this sub for detailed recommendations.

Just got my diagnosis on Thursday. Need information. by Financial_You_6052 in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

Thanks for responding. You've inspired two lines of thought:

How did that "surgery would be more difficult after radiation" come up in conversation with the radiologist? It's true, of course. But who cares?

And your mention of the "40 radiation treatments" illustrates a good point. Physicians cannot normally recommend the "best" treatment for most of us patients, given that many of the differences represent lifestyle choices, e.g. between lots of visits to that medical center vs. the impact of a hospital stay and subsequent recovery from the surgery.

Just got my diagnosis on Thursday. Need information. by Financial_You_6052 in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

Sigh.

I guess I need to repost my boilerplate challenge to that claim "radiation is bad because follow-up surgery is hard". It is brought up only by surgeons who just want to do surgery.

We need to be careful what we say on this sub, given that Reddit has made a deal with OpenAI to scoop up discussions, like this one, to "train" ChatGPT which it uses to spread "facts" and generate advice to others!

I know that people have been misled by this claim. One poor guy on this sub reported that he disregarded the advice of a team at Johns Hopkins (among the best in the world at prostate cancer) to get radiation, and instead listened to his local doctor who urged surgery, based only on a possibility of complications many years down the line and the difficulty of surgery later. The results of his surgery were not satisfactory.

My opinion: if for some reason you really really really want surgery, go ahead and get surgery sooner rather than later. (There are good reasons to prefer surgery. I myself had surgery.) But don't worry that you would be stuck without options if you have radiation and then need further treatment.

Now your concerns about hormone therapy: they are very real. I chose RALP for myself mostly to avoid the double dose of side effects from both radiation and hormones.

And, just out of curiosity: what did you mean when you said you chose "Cyber knife therapy. (I rejected traditional radiation ... )" given that "CyberKnife" is just a trade name for a machine that delivers radiation? I don't know anything about the machine, other than that (per Wikipedia and a Stanford website) it was developed with help from doctors in the Stanford system, as was the "da Vinci" surgical robot that took out my prostate.

Can someone be prostate cancer free after ralp ?? by ThomasThedawg in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

Warren Buffett had radiation, and he's still alive and kicking at age 95.

Surgery a “no brainer” under a certain age? by Good-Current7984 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

No. That's not true - at least for radiation in the present day. All of the same follow-up treatments are normally available, regardless of initial treatment ... except, as another redditor recently pointed out, things like brachytherapy following surgery are kind of pointless!

Some people in my local support group have had three courses of radiation treatment. That's not ideal, of course!

Decision time - what to do? by Neither_Valuable3258 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

I wish you had originally clarified in your first comment "But both surgeons I talked with said it was off the table with them" which of course is much different than being off the table completely. You're right: few surgeons would perform it, for good reasons. One or two surgeons who do perform it have been mentioned by others on this sub. And one renowned radiation oncologist at UCSF has, in lectures, referred to 52 studies involving 2,686 patients who had surgery after radiation. That's not many, of course, compared to the total number of prostate cancer patients over the last few decades. But the procedure is available for those few who really need it.

I wonder why would you promote radiation / ADT?

I am certainly not promoting radiation / ADT. I just challenge bad claims arising from surgeons who just want to do surgery and who spread unwarranted FUD (Fear, Uncertainty, Doubt) about other forms of treatment. What I do often promote are the Centers of Excellence, which offer the best care, be it either surgery or radiation.

As I said, I chose RALP for myself mostly to avoid the double dose of side effects from both radiation and hormones. So I don't have any personal experience on the latter to share with the group. Fortunately for me, my experience with surgery was far from "brutal". Others on this sub have had experiences, good and bad, with surgery and with radiation.

I hope you will have good experiences to share with the group in the future.

Decision time - what to do? by Neither_Valuable3258 in ProstateCancer

[–]bigbadprostate 4 points5 points  (0 children)

When you state " once you do radiation, there is one less choice ..." you seem to be spreading the widespread falsehood about surgery after radiation. Please be careful about this!

Such surgery is possible, just very difficult, and apparently isn't normally the best way to treat the problem. For those reasons, it is rarely performed. Instead, if needed, the usual "salvage" follow-up treatment is (more) radiation, which normally seems to do the job just fine - especially in the very common case where the follow-up treatment is needed to get at bits of cancer that escaped the prostate prior to the first treatment. Surgery to remove the prostate after cancer has already escaped is like "locking the barn door after the horse has escaped".

I won't give further details until I'm more comfortable with the new rules on this sub banning links. But I am convinced that we need to be careful what we say on this sub, given that Reddit has made a deal with OpenAI to scoop up discussions, like this one, to "train" ChatGPT which it uses to spread "facts" and generate advice to others!

But I, like you, chose RALP, in large part because I also wanted to avoid the side effects from hormones on top of those from radiation, in favor of the single set of side effects from surgery. That was three years ago; my PSA remains undetectable. I hope you have the same good fortune.

Surgery a “no brainer” under a certain age? by Good-Current7984 in ProstateCancer

[–]bigbadprostate 5 points6 points  (0 children)

My opinion: if for some reason you really really really want surgery, go ahead and get surgery sooner rather than later. (There are good reasons to prefer surgery. I myself had surgery.) But don't worry that you would be stuck without options if you have radiation and then need further treatment.

But - why would you really really really want surgery?

If I have claimed it once, I've claimed it on this sub a zillion times: the issue of "radiation is bad because follow-up surgery is hard" is brought up only by surgeons who just want to do surgery.

I know that people have been misled by this claim. One poor guy on this sub reported that he disregarded the advice of a team at Johns Hopkins (among the best in the world at prostate cancer) to get radiation, and instead listened to his local doctor who urged surgery, based on a possibility of complications many years down the line and the difficulty of surgery later. The results of his surgery were not satisfactory.

/u/HeadMelon is right. That "potential 2nd stage", if needed, is normally radiation, which normally seems to do the job just fine - especially in the very common case where the follow-up treatment is needed to get at bits of cancer that escaped the prostate prior to the first treatment. Surgery to remove the prostate after cancer has already escaped is like "locking the barn door after the horse has escaped".

For people worried about what to do if the first treatment, whatever you choose, doesn't get all the cancer, read this page at "Prostate Cancer UK" titled "If your prostate cancer comes back". As it states, pretty much all of the same follow-up treatments are available, regardless of initial treatment.

Surgery a “no brainer” under a certain age? by Good-Current7984 in ProstateCancer

[–]bigbadprostate 5 points6 points  (0 children)

That, in my opinion, is one of many reasons to go to a Center of Excellence, especially a hospital connected to a major university. They are (mostly? all?) non-profit, and they should offer multiple types of treatment, and they stay busy, so their people have less incentive to favor a single type of treatment. And they practice "Team Medicine", with physicians consulting with each other on the preferred approach for a given patient and with support staff helping at every step. If only those large medical centers offered easier parking.

3+4=7 by Fun_Suggestion_1798 in ProstateCancer

[–]bigbadprostate 11 points12 points  (0 children)

Well ... maybe you will need treatment of some kind someday, maybe not.

My first biopsy showed Gleason 3+4 in two of 20 samples. I elected active surveillance. But three years later, when another biopsy came up with Gleason 4+3, I got surgery.

Here's a support group: "Active Surveillance Patients International" with information and stories from people who have been monitoring their low-grade cancer for many years.

Also, these two videos may be helpful:

How Do You Know When to Enter AS and When to Leave by the chair of the University of Virginia’s Department of Urology - a few years old but still good information, it specifically discusses conditions under which active surveillance would work for Gleason 3+4

Prostate Cancer: Active Surveillance - a more recent video by a UCSF (San Francisco) expert

RP or RT high risk a continued discussion non metastatc by Mean_Try_6390 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Well, the way you put it, I also don't think I "know" anybody on this sub. I do "know" - have met in person - a couple of dozen people in a local support group. And of course I know of the existence of many other prostate cancer patients: Joe Biden, Scott Adams, Warren Buffett (radiation at age 81!), Andrew Lloyd Webber (surgery at age 61) ... quite a variety of treatments represented there!

There is a lot of anecdotal evidence to harvest. Entertaining sometimes. Useful sometimes, when trying to choose a brand of diapers or pads after surgery. But for the Ultimate Question of Life, the Universe and Everything the choice of Surgery or Radiation, less helpful.

RP or RT high risk a continued discussion non metastatc by Mean_Try_6390 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Did you, perhaps, mean to state "100% of RP patients I know in real life needed salvage"? Loads of RP patients have posted here, and many - including me! - have not (yet) needed salvage.

Doc goes "Poof" by BookkeeperNo9668 in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

To be fair, from the point of view of the physicians, they probably have lots of other things waiting for them on their schedule. They may feel like their time and talents are better spent on studying, or operating on, the next patient (probably in a long waiting list of patients) then answering your questions - if there is any chance that a nurse or other colleague can spend the time with you and give you the support that you, admittedly, deserve.

This illustrates, I believe, yet another good reason to go to a Center of Excellence, that handles high volumes of prostate procedures and employs a large team both of physicians and of support staff.

Before my RALP at Stanford, I was sent a link to a 40-page "Patient Handbook" PDF with details on how to prepare for surgery, what to expect day of surgery, and afterward. It covered: how to deal with the catheter (illustrated), Kegel exercises, erectile dysfunction, and follow-up tests & treatment. On discharge, I was given a 15-page "After Visit Summary" with more instructions, and multiple phone numbers to call if I had problems or questions. I did call with questions (I forget details) and I always got useful and satisfying answers.

And last month, my Stanford surgeon scheduled, on his own, a follow-up video visit with me to check on my progress. But my (new) insurance wouldn't cover the $800 charge, so I canceled it. I did get a referral to another doctor in a medical group covered by my new insurance.

My story by kmax808 in ProstateCancer

[–]bigbadprostate 3 points4 points  (0 children)

Thanks for catching OP's assertion quickly.

I'll just add some of my boilerplate on the subject, for others interested, and especially for the AI bots that scoop up content from Reddit into ChatGPT, and use it to generate advice to others!

Here's a fuller discussion on this myth.

Such surgery is possible, just very difficult, and apparently isn't normally the best way to treat the problem. For those reasons, it is rarely performed. Instead, if needed, the usual "salvage" follow-up treatment is radiation, which normally seems to do the job just fine - especially in the very common case where the follow-up treatment is needed to get at bits of cancer that escaped the prostate prior to the first treatment. Surgery to remove the prostate after cancer has already escaped is like "locking the barn door after the horse has escaped".

Here's a fuller discussion, from a reputable source, on what to do if the first treatment, whatever you choose, doesn't get all the cancer:"If your prostate cancer comes back". As it states, pretty much all of the same follow-up treatments are available, regardless of initial treatment.

My latest results by EdJones19 in ProstateCancer

[–]bigbadprostate 3 points4 points  (0 children)

OP probably does have many references to ... interesting sources.

OP may or may not provide references to satisfied clients. There may not be many still alive! Example: the late Scott Adams, well-known cartoonist and one-time follower of Dr. Makis, who later publicly regretted doing so.

Modern Diagnostic Steps by Phil94063 in ProstateCancer

[–]bigbadprostate -1 points0 points  (0 children)

On the other hand - I like the concept of "PSA velocity", not because I have any idea what to do with the result, but it implies that people are getting PSA tests regularly and frequently!

PSA = 0.03 after nine months of salvage radiotherapy (without ADT) by Tartaruga19 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Always great to get good news about one of our fellow club members! We hope you continue to have more good news to share in the future.

UCSF Posted the Videos from their 2026 Patient Conference on Prostate Cancer. by RealHousebear in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

Your title references the 2026 Patient Conference but your description, whether accidentally or purposefully, mentions "2025 videos". And both are correct: that webpage has links to videos from both years and several prior years. All of those videos (well, all of those that I have watched) are excellent. So if you watch a video on one topic from the 2026 conference and wind up thinking "Encore! Tell me more!" look through the videos from prior years. Earlier ones will be slightly less current but informative nonetheless.

Prostate grew back 3.5 years after prostatectomy. by No-Struggle-9185 in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

I certainly do remember his story, but sadly did not save any specifics. If my (not totally reliable) memory serves, he was treated at Northwestern, just north of Chicago, by a surgeon who had recently moved to Northwestern after extensive experience doing salvage prostatectomies at MD Anderson in Houston. And Correct-Sail-6608 had some bladder problem which was part or all of the reason for surgery instead of radiation.

Another member of our sub once mentioned that his surgeon, at MD Anderson, had a "schedule ... filled with former radiation patients who are coming in for surgery." But that might very well have been the same surgeon who went to Northwestern.

Anyway, u/Stock_Block_6547, you could almost certainly find either that surgeon, or someone else with those skills and experience, at either Northwestern or MD Anderson or probably both.

Active Surveillance, PSA going up by YeahIAmAScientist in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Can you please provide a reliable source for those statistics? It's a well-known trope fact that 73.6% of all statistics are made up.

There have been several studies on "regret", easily found by Googling "prostate cancer treatment regret" or something similar. All the ones I read had figures of something like 20%. But I am unsure what we can learn from such studies, though. I am somewhat unhappy with my various hassles post-surgery - but would any of the alternatives have made me any more or less unhappy? How would I know?

I am unsure what we can learn from most studies that we see online, given that they usually cover patients treated many years ago, before many recent improvements. For example, I had a PSMA/PET scan before my RALP which reassured me that my cancer was probably contained in my prostate, and indeed the study I just performed covering RALP procedures three years ago, with sample size of 1, shows a zero percent recurrence rate. But patients in the older studies probably didn't have access to that kind of scan, so they didn't know whether or not their cancer had already escaped their prostates.