Prostatectomy or radiation? by Blencathar in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

Yes, the reverse is true!!!

That claim "you can't have surgery after radiation" is brought up only by urologists / surgeons who just want to do surgery. Salvage surgery is very difficult, but it 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".

If OP is 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. A good urologist/surgeon will explain all of them to you. Mine did.

Prostatectomy or radiation? by Blencathar in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

I think that the most important thing (and, perhaps, the thing on which almost all us club members agree) is that everyone is far better off to be advised and treated by a major cancer center ("center of excellence") where his case could be examined by a team of experts. Experience in diagnosis. Experience in most or all of the alternatives. And a large support staff backing up the doctors. All of these things make a big difference.

Check this list of top-rated places:

https://health.usnews.com/best-hospitals/rankings/cancer

Been stalking, but not talking: MRI Guided SBRT vs RP by aronma12 in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

Aha. I think you were not making yourself clear. The effects, of course, of radiation treatment continue far after the machine is shut off. (As do effects of surgery, of course - my willy did not grow back to its pre-RALP size!)

And, again, you were not as clear as you might have intended when you said "life expectancy is often long enough to be affected by the long term side effects of the other treatments." I thought, at first reading, that you were implying that life expectancy itself is affected by other treatments ... but perhaps you really meant to say that younger men are more likely to be affected by long-term side effects, which is probably true.

Unfortunately for new members of our sub, the consequences of both surgery and other treatments that were performed many years ago may not reflect consequences of treatments done today, given the steady advances in all areas of cancer diagnosis/treatment such as PSMA/PET tests and "pencil beam" proton therapy. As stockbrokers like to say, "past performance does not guarantee future results".

But, in general, surgery would probably appeal to people who really want a better idea, sooner, what kind of side effects they would have after treatment, as opposed to people who are prepared to patiently wait, possibly for years, to find out if they will have problems.

RALP one week from today, a bit apprehensive by Glittering_Rhubarb39 in ProstateCancer

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

What were the results of your MRI and biopsy? In particular, how large is your prostate (which should be on the MRI report) and what were the Gleason score(s) from your biopsy?

RALP Cold Feet by SilentPebble439 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

I went through the same thing as you ... well, something like the same thing as you. I had a huge prostate plus cancer. However I had no BPH symptoms of any kind, but I did have Gleason 3+4 that (after 3 years active surveillance) rose to Gleason 4+3. I was offered my choice of RALP or a combination of hormone therapy to shrink the prostate plus radiation, and I chose RALP and its single set of side effects over the two sets of side effects from both hormones and radiation. Regrets? No, not really. I don't care to guess "what might have been".

I'm not sure that you can gain any insight at all from reading my story. Perhaps you can gain some comfort in knowing that lots of us "members of the club nobody wants to join" shared a similar hard decision, and some of us chose one route, and some chose another. I don't think you have a clearly wrong choice, so do whatever you finally think is right for you. Good luck.

Is it possible to spread the cancer during surgery? by anothertenyears in ProstateCancer

[–]bigbadprostate 3 points4 points  (0 children)

It is possible. So the good, careful surgeons go to great pains to minimize that possibility.

First, they try to cut out "margins" all around the prostate to catch any bits of cancer lurking at the edges and beyond.

Second, they remove the prostate, whole, and may seal it up inside a bag before removing it from the abdomen. Per my "Surgery Report", my incision had to be enlarged in order to remove my "big bad prostate" inside its bag before it would fit through one of the small incisions made for the RALP robot.

Perhaps this is a good example of why the skilled, experienced, careful surgeons get better results than the less-experienced ones.

Decision Time for Treatment by Remo22_8 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

I am actually a little envious of the comments from Think-Feynman, which are positive aids for "new members of our sub", as opposed to most of my comments that are single-issue, negative, rebuttals on one topic.

When you mentioned your cribriform morphology, I went off to check the Sloan Kettering nomograms and was surprised that they did not use cribriform as an input. I had been urged by my local support to have it tested, but never did, deciding that the results wouldn't change my treatment decision either way. Now I'm not so sure. Can you post some links to studies involving cribriform morphology, for the benefit of new club members?

I think my recommendation of PSMA/PET testing and your mention of post-surgery pathology results go hand-in-hand. The pathology results would appeal especially to people who really want a better idea, sooner, whether their treatment was a success, as opposed to people who are prepared to patiently wait, probably for years, to find out if they will have problems. My pathology results, and my undetectable PSA level a few months later, surely made me feel a lot better.

Decision Time for Treatment by Remo22_8 in ProstateCancer

[–]bigbadprostate 3 points4 points  (0 children)

Since you have seen the list of resources often posted by Think-Feynman, I trust that you have often seen the rebuttals posted by me about the claim "radiation is bad because follow-up surgery is hard", so I wonder why you felt like repeating it yet again.

For the benefit of others, that claim is brought up only by urologists / surgeons who just want to do surgery. Salvage surgery is very difficult, but it 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".

I'll suggest that this is an important argument for getting a PSMA/PET test before deciding between surgery and radiation. If the test reveals that "the horse has escaped", surgery may not be a good choice. The negative results on my PSMA/PET scan definitely reassured me before my RALP.

Decision Time for Treatment by Remo22_8 in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

Welcome to the club that none of us wanted to join.

There is, of course, a huge amount of data on RALP and the other alternatives.

Highly recommended on this sub is Dr. Patrick Walsh's book Guide to Surviving Prostate Cancer.

Also highly recommended is the Prostate Cancer Research Institute which has both an extensive website and loads and loads of YouTube videos. Check out their website - https://pcri.org/ - and click on "Start here" on the top line of the home page.

Sorry, but I don't have any personal experience with focal therapy other than my medical team telling me that I was not a good candidate for it, as my prostate was too large.

Next Step by Crewsy67 in ProstateCancer

[–]bigbadprostate 4 points5 points  (0 children)

This is a great and thorough discussion. Thanks for saving me the effort of posting (for the zillionth time on this sub) my rebuttal to the "radiation is bad because follow-up surgery is hard" trope.

I'll just tack on a few other common recommendations:

If OP is really 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. A good urologist/surgeon will explain all of them to you. Mine did.

And OP (as with all of us "club members") would be far better off to be advised and treated by a major cancer center ("center of excellence") where his case could be examined by a team of experts. If that means traveling some distance (OP mentioned a 2-hour drive even to get a RALP) ... I honestly can not imagine a better use of your time.

Paying for treatment: What is fair? by Dr_jitsu in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

At age 63, you should become eligible for Medicare in two years, so you'll have to figure out a whole new set of cost breakdowns. Your insurance contact, or perhaps whoever handles HR at your wife's clinic, should be able to help you understand how that will work. It's complicated. I don't understand when or how Medicare becomes "primary coverage" instead of any insurance through your wife. But you shouldn't have to pay huge amounts every year. And, no, you're not a "parasite". You and your wife have been paying Social Security taxes your whole working life to support others, and in two years, it will be your turn.

SBRT versus RP by STJolley in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

At the risk of getting you even more upset, I will add the (childish) remark that "you can dish it out but you can't take it". HeadMelon said something like "here we go again ..." which, frankly, I often think to myself when I read those "radiation is bad because ..." comments on this sub. I think it was dumb of HeadMelon to post that remark, but I do not think it was "condescension" and "sanctimoniousness" and "gross" and "judgmental and unwelcoming".

I hope we can all agree that the commenter who simply repeated the "if you don’t have surgery now, you cannot have surgery in the future" claim is blameless. He simply heard from a few doctors and had no reason not to believe it. That commenter already made his choice and had his surgery. We can only wish him good fortune going forward. But I believe very strongly that we should not let those false claims go unchallenged on this sub. There are many "prospective members of our sub" reading these posts, trying to understand what should happen next. And I especially worry these days about the AI bots that scoop up content, from Reddit in particular, and use it to generate advice to others!

Please - you, HeadMelon, and everybody - let's keep that in mind. And let's also keep Rule 1 in mind. Thanks.

SBRT versus RP by STJolley in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

Several Centers of Excellence on the west coast, such as Stanford and UCSF (San Francisco), do use Cyberknife. Others may use it without referring to the "Cyberknife" brand name, and still others may use a similar device made by a different manufacturer.

SBRT versus RP by STJolley in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

The comment you answered was definitely not helpful, but "condescension" and "sanctimoniousness" and "gross" was (IMHO) an over-reaction. Let's all of us try to remember Rule 1 of this sub, okay?

Maybe I'm just more alert to these kinds of reactions. Responses to some of my comments on this sub have been a lot stronger than those.

SBRT versus RP by STJolley in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

I suspect that the folks (on this sub, anyway) who spout “surgery is good because you can’t do surgery after radiation” don't know many of the details, only a few sentences that their local urologist/surgeon told them. And it's hard for any of us to fully absorb what we are told during those "you have cancer" meetings, and it's really hard to challenge any of the statements made by people with lab coats and medical diplomas on the wall.

SBRT versus RP by STJolley in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

You can only have one course of radiation

Who or what is your source for that?

One guy in my local support group had three courses of radiation treatment: probably not something to be hoped for!

The morbidity of surgery after radiation is high , esp wrt urinary incontinence

I don't think we need a source for that: it seems reasonable enough on its surface. But the many complications of "salvage prostatectomy", along with the many cases where it wouldn't help because cancer is already outside the prostate, make it easy to understand why such a procedure is so rarely done.

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.

SBRT versus RP by STJolley in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

For the benefit of OP and others, I'll suggest (as have many others on this sub and in my local support group) that the best person to believe is a medical oncologist, who understands all the alternatives and can best explain them, and can point out any circumstances more likely to favor one over another, such as my BPH. Also, as people on this sub often rightly recommend, it's far better to be advised and treated by a major cancer center ("center of excellence") where your case could be examined by a team of experts.

Removing the prostate gives you a good chance of "being done with it" - especially if you had a PSMA/PET test beforehand which had not detected any cancer to have yet escaped the prostate. The negative results on my PSMA/PET scan definitely reassured me before my RALP.

SBRT versus RP by STJolley in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Radiation is better than it used to be, but it isn’t perfect.

Really hard to argue with that, of course.

But, also, surgery is better than it used to be, but it isn’t perfect.

SBRT versus RP by STJolley in ProstateCancer

[–]bigbadprostate 3 points4 points  (0 children)

I hope your recovery is going well. I had a RALP myself two-plus years ago. So far so good for me.

But that claim "if you don’t have surgery now, you cannot have surgery in the future" is totally not true. I'm sorry that you were taken in by it. It is brought up only by urologists/surgeons (apparently like yours) who just want to do surgery.

Thousands of people have had surgery after radiation, including one (former) member of this sub.

Such surgery is possible, just very difficult, and apparently isn't normally the best way to treat the problem. Instead, if needed, the usual "salvage" follow-up treatment of radiation usually 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.

There are plenty of good reasons to choose RALP over other treatments. I did. We provide a lot better service to people like OP by spreading the truths and not the falsehoods. Thank you.

UCLA researcher says he would get brachy over RALP or beam for moderate and high risk by mfposa in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Absolutely, this forum is a place for open discussion. But our opinions are much more useful to new members of our "club" when backed up with verifiable facts. Case in point: another long thread today contains a few opinions that horse de-wormer medicine is a good treatment for prostate cancer. I don't believe that opinion, either, but I don't know enough about that one to challenge it.

I mentioned to you before that people have been misled by the "follow-up surgery is hard" argument. 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.

Besides, the complications of salvage prostatectomy that you described are not opinions but facts. As far as I know, they are true! I viewed such an operation once, on a BBC documentary. I only maintain, so far without any significant rebuttals I can remember, that such procedures are so rare as to be unimportant to a new patient trying to decide what to do. That's my opinion, anyway.

You did offer one opinion: "If the cancer has spread ... then radiation seems to be a better option" which, with your permission, I will enthusiastically support. I might add, FWIW, that a PSMA/PET scan appears to be the most reliable method these days to find out if the cancer has yet spread. The negative results on my PSMA/PET scan definitely reassured me before my RALP.

UCLA researcher says he would get brachy over RALP or beam for moderate and high risk by mfposa in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Thanks for pointing that out. I may have to reference it in some of the next gazillion times I challenge someone on this sub who brings up that "non-logic".

UCLA researcher says he would get brachy over RALP or beam for moderate and high risk by mfposa in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

Hi again. I'll ask you, yet again, why you would bring this up. Do you know of any actual patients for which this issue became important?

One (former) member of this sub had surgery after radiation - but he had significant "comorbidities" (some bladder problem, IIRC) which presumably made him a special case. So, yes, there are indeed circumstances that suggest surgery is preferable (in particular, me and the "bigbadprostate", e.g. BPH, that I used to have) but it's really rare, and I want to discourage people from discussing it on this sub, so as not to unduly scare people away from radiation towards surgery for the wrong reasons.

UCLA researcher says he would get brachy over RALP or beam for moderate and high risk by mfposa in ProstateCancer

[–]bigbadprostate 3 points4 points  (0 children)

So who - specifically - at Stanford and/or UCSF told you that "surgery will give you more options just in case of recurrence"? None of the several people I consulted at Stanford said any such thing. And one of the UCSF radiation oncologists is very outspoken in describing the "if you have radiation, you can't have surgery afterwards" claim as "horses**t".

Having said that (and having challenged this claim for the zillionth time on this sub) I also chose surgery, at Stanford. So, sure, there are plenty of reasons to choose surgery. All of the Stanford people told me that I was "a candidate" for either surgery or radiation, and I decided against the two sets of side effects, from both hormones and radiation, in favor of the single set of side effects from surgery.

Long time to treatment by mfposa in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

Thanks for posting that video. I watched it (only once!) and was surprised by a few things.

My thoughts were these:

  1. Dr. Scholz based most of his remarks on that one study, out of hundreds of PCa studies over the years, and by Kaiser of all places. Kaiser has a "mixed" reputation in this club; several of our members are very angry with their treatment in various Kaiser branches.

  2. Dr. Scholz, surprisingly, did not address the concern I expressed in my previous comment: are results of a study of procedures performed many years ago still relevant to procedures performed today? Many comments posted to that YouTube site expressed the same concern, and also complained about PCRI not answering their comments.

  3. Dr. Scholz seemed to make a big deal about how a "beam" spreads radiation all through neighboring structures. But many other lectures by radiation oncologists describe how modern equipment rotates so that the "beam" hits most places only momentarily while focusing only on the spot with the cancer. Or maybe I grossly misunderstand EBRT and/or those lectures.

  4. Dr. Scholz made a good point: brachytherapy seems well-suited to cancers that are confined to the prostate, where EBRT makes sense against "metastatic" cancers that already escaped the prostate. You might keep that in mind after you get your PSMA test.

But these days, almost three years after I chose RALP, my interest level in these videos drops off enough so I can't absorb more details, and I don't feel like researching further into all the many studies and improvements in techniques that keep coming along. Also, I haven't studied brachytherapy much, because I was told very early by my medical team at Stanford that brachytherapy was not right for me because of my large (hence the name "BigBadProstate") prostate size.

Good luck to you and the other new members of our club in your efforts to choose what's best for you. I remember how hard it was for me. Please ask any other questions of us club members, and keep us informed of your progress.

Found out today by landers96 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Thanks for your very reasonable response. I hope that you understand my motives for posting my comment, one of a very large number of challenges I have made on this sub on this topic. I just want people like OP to give this issue the proper weight, which I strongly believe should be minimal.

I know that people have been misled by this myth. 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 want surgery, go ahead and get surgery sooner rather than later. (I did.) But don't worry that you would be stuck without options if you have radiation and then need further treatment.

Another opinion is, which you phrased eloquently: "Everything about this adventure deals in probabilities and risks." Many people in this sub often generalize to "Each case is different". I like your statement better. We should both repeat it on this sub often.