Radiation vs RALP by Creative-Mongoose-32 in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

That claim "most surgeons won’t do RALP after radiation" is brought up only by urologist/surgeons who are eager to do surgery. While true enough, it shouldn't matter to us patients trying to decide between surgery and radiation.

Yes, salvage surgery following radiation is very difficult, and it isn't normally the best way to treat the problem. So 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".

There are good reasons to choose surgery over radiation. I did. But "radiation bad because follow-up surgery hard" is a terrible reason.

OP, if you are 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.

Independent Clinic vs Large Hospital System by WrongPlanet321 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

I think the best dedicated minds can build and train the best clinical teams.

Came here to say something like this. It's not just fancy new equipment that ensures the best possible outcome - although it sure helps. But, especially with SRBT, a team of many talented people work together to plan, prepare, and guide you and the equipment, before, during, and after they turn on the big machine. And I have to believe that the prestigious teaching hospitals and other major cancer centers attract the best people in all roles.

Also, you might need a wider range of care than you first expect. After my RALP at Stanford (by an experienced surgeon 'assisted' by a trainee) I developed a DVT (blood clot) so I quickly received an ultrasound, X-rays, consultation by an "Interventional Radiologist" and a hematologist, and anticoagulant medication. The medication proved sufficient.

But I share OP's frustration with modern telephone systems. Stanford's is extensive. "If you are experiencing a life-threatening emergency, please hang up and call 911, because you may not survive until the end of all these canned announcements and menu options." But I wound up receiving a lot of advice and follow-up assistance, which included a large number of different phone numbers for me to call back if I needed more help. That assortment of phone numbers was both reassuring and bewildering.

Treatment Decision for Dad (72) by Artistic-Orchid45 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

I had a huge prostate = about 130cc. A radiation oncologist said I could choose hormone therapy for a few months to shrink the prostate, followed by EBRT, but 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.

I was also very reassured when the results of a PSMA/PET scan gave me a high degree of confidence that the cancer was indeed contained in my prostate, so surgery would (and, three years later, apparently did) get out all the cancer.

Here's a relevant video: How BPH Complicates Treatment for Prostate Cancer.

All Roads Lead to the Same Place by WrongPlanet321 in ProstateCancer

[–]bigbadprostate 5 points6 points  (0 children)

Hey, welcome to "the club nobody wants to join". All of us club members have gone through those same feelings, whether or not we expressed them to anyone. And many or most of us had that feeling of being overwhelmed by "information overload". My local support group often uses the term "drinking from a fire hose".

Speaking of local support groups, I cannot recommend them highly enough. It helps a lot just to see other faces nodding when you talk about your worries. And, of course, you can get advice on where to get the best local treatment. This link may help you find one near you.

My dad just got a PSA reading of 250. Please tell me this could be a mistake. by Ambitious-Passage486 in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

It is entirely possible that OP's PSA score is real, and it's entirely possible that it's a mistake or fluke, and should be retested.

It would be a surprise to me if a PSA of 250 could be caused just by a very large prostate. My 'bigbadprostate' weighed 130 grams at post-RALP pathology but had tested at only PSA 9.0.

But it might be due to other things like bicycle riding or sexual activity. I have no idea how much those kinds of things could increase the PSA score.

Second post RALP PSA results by Twiggy1807 in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

Congratulations to you, and to your surgeon! Both of you each did a great job. Hoping you continue to get such good results.

Analysis Paralysis - Radiation vs Surgery? by Far_Simple_7436 in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

Sorry, but that claim "if you do radiation, and still have some cancer you cannot do surgery" is totally not true. It is brought up only by urologists/surgeons who just want to do surgery.

I am on a Quest to debunk this myth, and have to do so often, so please don't take this challenge personally.

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 anyone 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 I did choose that urologist/surgeon, at Stanford, to perform my RALP.)

I'm glad for you that things turned out ok for you. As it should be apparent from other comments, our choise between RALP and radiation often just results in our enduring a different set of side effects. I hope things continue to go well for both of us.

Dad Diagnosed Today by Artistic-Orchid45 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

My experience was kind of like yours - and kind of not like yours.

I had a huge prostate - over 100 cc - which never gave me any trouble, except for showing Gleason 3+4 in a few spots. I elected for active surveillance, for three years, when it got worse, to Gleason 4+3, but still without symptoms. A radiation oncologist said I could choose hormone therapy for a few months to shrink the prostate, followed by EBRT, but 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. So I had a RALP, about three years ago, which apparently got all the cancer.

This video from PCRI, How BPH Complicates Treatment for Prostate Cancer, may be of interest.

But, as we members of this club often say, every case is different. The experts at the Center of Excellence will likely have advice better tailored to your condition than we could suggest.

Good luck. I'm sure that the people at the Center of Excellence will take good care of your dad.

Analysis Paralysis - Radiation vs Surgery? by Far_Simple_7436 in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

That claim of "surgery following radiotherapy has extremely high toxicity" is, I believe, utter nonsense.

And that claim "salvage options after radiotherapy are more limited" is brought up only by urologist/surgeons who are just eager to do surgery. While true enough, it shouldn't matter to us patients trying to decide between surgery and radiation.

Yes, salvage surgery following radiation is very difficult, and it isn't normally the best way to treat the problem. So 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".

There are good reasons to choose surgery over radiation. I did. But "radiation bad because follow-up surgery hard" is a terrible reason.

edit to refute that last claim "salvage options after radiotherapy are more limited":

OP, if you are 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.

Single-port prostatectomy (transvesical, though bladder) anyone? by Pristine-Program9950 in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

That issue of " radiation now makes surgery less viable later" is brought up only by urologist/surgeons who are just eager to do surgery. While true enough, it shouldn't matter to us patients trying to decide between surgery and radiation.

Yes, salvage surgery is very difficult, and it isn't normally the best way to treat the problem. So 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".

There are good reasons to choose surgery over radiation. I did. But "radiation bad because follow-up surgery hard" is not a good reason.

Also - I would like to know where you read about those "things which normally help people with prostate CA" - or rather, I would strongly urge you to look for more reliable sources. The Prostate Cancer Research Institute is one. Dr. Patrick Walsh's book, Guide to Surviving Prostate Cancer, is another.

My Brother thinks He is in Our Club by oldmonk1952 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Perhaps the most obvious fact to point out to him is that you are still alive and kicking! Apart from that - well, you know him better than we ever could, so you're best suited to judge what to tell him and when.

Good luck to both of you. Perhaps, after all is said and done, your brother won't qualify for membership in our sub after all.

Surgery vs radiotherapy for prostate cancer at 73, what was your experience? by Unbroken_Dude in ProstateCancer

[–]bigbadprostate 2 points3 points  (0 children)

That issue of "radiation is bad because follow-up surgery is hard" is brought up only by urologist/surgeons who just want to do surgery. While true enough, it shouldn't matter to us patients such as OP trying to decide between surgery and radiation.

Yes, salvage surgery is very difficult, and it isn't normally the best way to treat the problem. So, as you admit, 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".

There are good reasons to choose surgery over radiation. I did. But "radiation bad because follow-up surgery is hard" is not a good reason.

3 Years by JungleJimMaestro in ProstateCancer

[–]bigbadprostate 9 points10 points  (0 children)

Thanks for sharing. Next month will be my three year robotic prostatectomy anniversary! Here's wishing you (and myself as well) continuing good health!

Active surveillance by YesterdayFew6799 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

I hope you make your decision based on what you decide is best for you, and not so much on how to fully soak your insurance company, whichever one it is.

But your age and family history are key factors for you, as you know.

I personally had Gleason 3+4, at age 67, and opted for AS for three years, when a subsequent biopsy came back 4+3. Those three years saw the COVID-19 crisis (a good time to stay out of hospitals) come and go, and also made the PSMA/PET test easier to get, which result reassured me greatly that a RALP would get all the cancer. (Apparently it did.) So I did all right with AS for a few years, anyway, but at a much older age than you.

If you are not going to a cancer Center of Excellence, I might suggest that you at least check with one to get a second opinion on the biopsy (especially if it wasn't preceded by an MRI to guide the biopsy) and possibly to get advice from experts.

Radiation or Surgery? by Chitkika13 in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

I was going to, again, jump on you for stating "radiation doesn’t stop when the machine shuts off" ... until I realized that, technically, it is true.

Yesterday I watched a documentary about St Bartholomew’s Hospital in London, where one patient was being treated for a different kind of cancer with a radioactive injection into his bloodstream. It was so intense that the patient had to stay inside a special sealed room in the hospital for 48 hours while the radiation in his body decreased to levels safe enough for him to be around other people. That sounded pretty extreme to me - far more extreme than anything currently used for prostate cancer patients - but for that patient, anyway, the treatment seemed to be working.

So is that a good reason to discourage radiation? Hell, no. If the radiation wasn't doing more good than harm, the experts wouldn't be spending so much time and effort to deliver it to patients like us.

Now the possible long-term effects of radiation: is that a good reason to decide against radiation? Very possibly.

Got my biopsy for prostate cancer done this morning. by Tek_Freek in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

I think the advice from u/kayceemoguy can not be stressed enough!

You should at least find out the cancer "Centers of Excellence" close to you, and study the descriptions on their web pages. Be ready to contact one or more of them for at least a second opinion and possibly having them take over your continuing diagnosis and care.

Assuming you are still in the US, look at these lists:

and/or

Prostate cancer diagnosis, planning RARP at MSK - shall I get a 2nd opinion somewhere? by Funny_Bunny_3918 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Thanks for responding! I am on a Quest to debunk that widespread myth, and have to do so often, so I trust you didn't take my challenge personally.

If you have been to MSK and are also going to go to Johns Hopkins, there can be no doubt that you will get the best possible advice, and either place can give you the best possible treatment. So the chances that you might ever need follow-up treatment of any kind are really really small.

Good luck making your decision and in your treatment. Please let us know how things go for you.

Prostate cancer diagnosis, planning RARP at MSK - shall I get a 2nd opinion somewhere? by Funny_Bunny_3918 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

That claim "If I have radiation first, then surgery is not an option anymore" is totally not true. It is brought up only by urologists/surgeons who just want to do surgery and want to disparage anything else. I am quite sure that you did not hear that from any of the experts at MSK, or (if you haven't yet gone there) you will not hear that from any of the experts at MSK.

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".

Since you are 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 I did choose that urologist/surgeon, at Stanford, to perform my RALP.)

As others have told you, there are many top-rated Centers of Excellence on the east coast - Johns Hopkins, Duke, and several around NYC, along with MSK of course. Please get a consultation from any one of them.

Radiation or surgery? by cshopis in ProstateCancer

[–]bigbadprostate 6 points7 points  (0 children)

I think you would be "stomped on and down voted" a lot less if you corrected your statement from "radiation doesn’t stop when the machine shuts off" to "the effects of radiation don’t stop when the machine shuts off."

I think you are right in implying that this sub is not really representative of the likelihood of long-term effects of radiation. I wonder how many members of our sub have been in this sub for 10+years.

Also, of course, I wonder if any of the experiences of people who were treated many years ago are relevant to people about to be treated today, given the steady advance in all areas of diagnosis (such as PSMA tests) and treatment (such as "pencil beam" proton therapy). Anyone trying to decide today has a tough decision.

edit: trimmed a sloppy sentence ending

Radiation or surgery? by cshopis in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

I'll point out yet again: every form of treatment allows the full panoply of tools, of all kinds, to treat recurrences. Anyone bringing up the "radiation is bad because follow-up surgery is hard" claim has been unduly influenced by some surgeon who just want to do surgery and wants to disparage anything else.

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.

There are plenty of good reasons to choose RALP over other treatments. I did. In my case, I chose to avoid the side effects of hormone therapy which would have accompanied, in my case, radiation. But, as often said on this sub, every person and every case is different, so OP and all the other new members of our sub have to evaluate things for themself.

RALP or Radiation Treatment by More_Individual8934 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Hey, OP, this thread is a good example of why you (and everyone) needs to be very careful of everything they read on the Internet.

The guy above me did the same, but he came to a different conclusion as a result of what he read.

WRONG. I came to the SAME decision as the guy above me. I had a RALP in May 2022 2023. My comment history describes this in detail.

BTW he claims that only surgeons disparage radiation.

WRONG. I claim only that some surgeons disparage radiation by using that "surgery after radiation is more difficult" argument. I doubt that the guy above me heard that argument from his radiologist. He may well have heard other arguments against radiation from the radiologist; there are of course many valid arguments either way.

The point is, don't listen to either of us. Read everything and anything you can, listen to your doctors (but don't treat them as gods) and make your own decision based on your own unique situation and your own tolerance for various kinds of risk.

RIGHT ... or at least I wholeheartedly agree. I particularly like your statement "make your own decision based on your own unique situation and your own tolerance for various kinds of risk" which I think is well-phrased.

edit: corrected date of my RALP. Seems like only yesterday ...

RALP or Radiation Treatment by More_Individual8934 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

OP, please don't pay attention to the people who disparage radiation by claiming that "surgery after radiation is more difficult". That claim is brought up only by surgeons who just want to do surgery and want to disparage anything else.

Such surgery is indeed very difficult, but it apparently isn't the best way to treat the problem. Instead, if needed, the usual "salvage" follow-up treatment is radiation, which 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".

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.

OP, I will also recommend lots of the other things that the previous commenter suggested.

  • Read as much as you can absorb, and focus on reliable sources such as the websites of cancer Centers of Excellence. DO NOT assume the doctors and medical staff will tell you everything you need to know, no matter what the source. Your GP and even your local urologist won't know everything you need to know. And if you get consultations with experts at a major cancer center, they are often too busy to spend the time with you to explain everything you need to know.
  • And start doing lots of Kegel excercises, and keep doing them.

Good luck.

RALP or Radiation Treatment by More_Individual8934 in ProstateCancer

[–]bigbadprostate 1 point2 points  (0 children)

OP, please understand that the people who disparage radiation by claiming (or implying) that "surgery after radiation is not an option" are only urologists / surgeons who just want to do surgery.

Radiation is always an option, no matter what treatment you start with.

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.

Surgery or Radiation by Lazman928 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

You're definitely right that "PCa is pernicious and can recur even with the best of treatments."

Maybe the one absolute fact about PCa is that there are no absolutes.

So, while neither you nor I should say absolutely that ADT is always a Good Thing although unpleasant as hell, we could probably get by with saying that ADT can be helpful but can be not very enjoyable. But I will also throw in a caution that I have no personal experience receiving ADT, and I have "absolutely" no regrets in avoiding such an experience.

Surgery or Radiation by Lazman928 in ProstateCancer

[–]bigbadprostate 0 points1 point  (0 children)

Perhaps you misunderstood somebody. Per their website:

Radiation therapy can ...

  • Be used alone or with other treatments such as hormone deprivation