Just been diagnosed with prostrate cancer

You will get all kinds of advice on here but the one thing no doctor can tell you or be certain of is they can guarantee how bad the cancer is or where every spot the cancer is in the prostrate until it is removed. So they see a spot on an MRI and they treat it HIFU. You better go home and pray every day that they go it all, that the Gleason score was less than 7 and there is none on the other side of the prostrate they missed. The HIFU can only treat about a gram an hour so if you have a large tumor it can take a long time. If you have an enlarged prostrate which 50% of men have, you are looking at a long process. In the end, you will have the (you hope) dead cancer cells inside you.

 HIFU is for old guys and every low grade of cancer. How old are you?

Hi T

I am 50 with none aggressive PC , I thought HIFU was ideal for localised PC like mine as docs say my prostrate cancer found is minimal , not had MRI yet !

Tybeeman,

You mentioned old guys in your comment regarding treatment ,what is your opinion on a 75 year old with Gleason 7 choosing active surivillanc instead of treatment?

This 75 year old is not feeble, and health is good. Genetic testing of biopsy did not reflect a gleason 7.

Tybeeman, in my opinion you are a bigger problem than the cancer itself! Stop trying to panic men into a procedure that may not be right for them!

Just present accurate (and complete) facts and let men decide for themselves. You are as bad as the doctors who only admit (and then sugarcoat) the shortcomings when confronted. You come across to me as someone who needs to validate your choice by convincing others to do as you have done.

This forum is not to panic men. It is to inform them with accurate information so they can make an informed choice that is best for them. I know you will say that's what you're doing so let's just look at your last post and pick it apart for all to see.

"You will get all kinds of advice on here but the one thing no doctor can tell you or be certain of is they can guarantee how bad the cancer is or where every spot the cancer is in the prostrate until it is removed."

Congratulations, you have made a true and accurate statement. However, what you conveniently left out is, even with a prostatectomy the doctor cannot be certain or guarantee they got all the cancer. There is no guarantee with ANY procedure! NOT EVEN IF THEY CUT THE WHOLE THING OUT!

And from here is where your post deteriorates into half truths, misleading information and pathetic panic attacks...

"So they see a spot on an MRI and they treat it HIFU. You better go home and pray every day that they go it all, that the Gleason score was less than 7 and there is none on the other side of the prostrate they missed. "

First of all, the T3 MRI images are amazingly accurate. But even if something was missed on the MRI, HIFU is often used to treat the whole prostate so it's almost a mote point because everything is treated and there is nothing to miss. In the cases they only treat the "areas of concern" they also treat a margin of healthy cells around the area of concern. (This is common practice with other procedures too, including prostatectomy.)

Your pathetic panic attack!

"You better go home and pray every day that they go it all..."

I can say the very same thing about a prostatectomy and be even more justified because with a prostatectomy, (like gambling) YOUR ALL IN! So you better go home and pray everyday they got it all because if they didn't...you just went through hell with a long recovery, pain (don't forget the pain pills), a shorter (possibly deformed) penis, that you may NEVER get back to its original size, DRY orgasms FOR LIFE (that almost ALL men hate), incontinence of various degrees from only dribbles to life changing diapers, painful injections and pills just to get an erection, and don't forget the testosterone treatments you mentioned in an earlier post...(No chemicals in your body...my ...!). And, after all that, if they didn't get all the cancer, you still have to do radiation treatment. (So, I would be doing a whole lot more praying if I had a prostatectomy than if I had HIFU!!!). So with all that, someone (not me) could make the very same type of statement...Why would anyone in there right mind have a prostatectomy? Well, that also would be a poor statement to make because there are men that a prostatectomy was the right choice for them (and perhaps the only choice) and no one should judge them or tell them otherwise!

Misrepresenting the time...

"The HIFU can only treat about a gram an hour so if you have a large tumor it can take a long time. If you have an enlarged prostrate which 50% of men have, you are looking at a long process."

The HIFU procedure normally takes two hours. Mine was two and a half. I was under sedation so the amount of time the procedure took (from my perspective)...it was instant. But to do a honest comparison this is what I found online...

Q. How long does a da Vinci robotic prostatectomy surgery take?

A. The actual procedure normally takes two to three hours, although unusual circumstances can increase the time required.

So, if YOUR definition of the HIFU procedure (which normally takes 2 hours) is "a long process" what words would you use to describe the duration of time of a prostatectomy which takes EVERY BIT AS LONG and in many cases it takes 66% longer? (Oh, that doesn't include the "unusual circumstances" they mention in their answer above which they don't often know about until they are well into the procedure). BTW...Good luck if they decide they have to take the nerve bundles out at the same time! You won't get the bad news until you come out of the general anesthesia. (And at that moment you realize your better choice would have been radiation therapy).

Again, misleading statement

"In the end, you will have the (you hope) dead cancer cells inside you."

The dead cells deteriorate and are expelled out of your body naturally, just like the millions of cells that die in your body throughout your life.

Just an ignorant statement...

 "HIFU is for old guys and every low grade of cancer. How old are you?"

Actually, HIFU is for all age groups as are other procedures. Prostatectomy could be classified more for old guys as it leaves you sterile and will change your quality of life forever. HIFU allows young men (and men of all ages) to pursue a normal life with all sexual and urinary functions in tact. Isn't that what every man wants?

In conclusion:

Prostatectomy is a procedure with no guarantees.

HIFU is a procedure with no guarantees.

Prostatectomy is an "all in" procedure. And although there is no guarantee, once it's out its out. There's no turning back and you are stuck with that decision (even if you discover afterwords that another procedure would have been better).

HIFU (even though there are no guarantees of a cure) allows you to keep all other options while still allowing you to have children (if you are a young man) and maintain all sexual and urinary functions while keeping all your options (including HIFU) open in the future if ever needed.

A prostatectomy undeniably deteriorates a mans quality of life. (That's why there is so much research dedicated to finding less invasive procedures with fewer long-term side effects.

HIFU allows a man to keep his quality of life.

I really don't mind that you tried to slam HIFU. What I take exception to is your constant panic attacks and half-truths. So I will appeal to you once more. Just tell men your experience. Tell them what you are happy with (without slamming another procedure). Also, honest and let them know what you struggled with and what you did to cope with it so they might learn from you and know what to expect.

Most importantly, please stop making panic statements like,

"Don t lisen to these people. IT IS CANCER MAN, GET THE DAMN THING OUT YOU BODY" and

"Why would anyone in their right mind leave a cancer in their body...

These statements insult men and are counter productive.

A case can be made for and against any procedure because all the procedures have their advantages and disadvantages and as I have tried many times to get across, no one procedure is right for every man. And what needs to be emphasized is that every man must be his own best advocate, do the research and make the decision that is best for him.

thanks for the info much appreciated !

Dude You think I am the one trying to encourage people to have robotic surgery? You come on here trying to make sure they don’t have it. I don’t even read you whole comments because they are so miss informed and untrue I give my opinion and you give your and stop attacking me.

Fact one that can’t be disputed. You will never know how bad or how big a cancer is until you remove it. That is a fact that can’t not be argued. While it is being removed they will take, in my case 12 biopsies of the surrounding area to see if it has spread outside the prostrate.

Fact two that can’t be disputed. If you treat the PC it deteriorates the Prostrate and if the cancer comes back and that is a high percentage, it is a very hard to then have a prostatectomy. It is even called a “savage operation”.

IT IS CANCER MAN, GET THE DAMN THING OUT YOU BODY

I am not a man but my partner has had treatment for prostate cancer. He was not really offered surgery. It was in the booklets we were given to look through. But he dismissed it. He said he wouldn't even consider having his prostate removed. The thought of being permanently impotent or incontineng put him off. The other treatments are just as successful. With far fewer permanent side effects. The consultant said if the psa is still low 2 and a half years after the brachy was done then he is confident that it is 90% not going to return. So hopefully only a 10% risk of it returning. He is willing to take that risk. If it returns there are other treatments like HIFU or cryotherapy which hopefully will be more widely used in the future should it return.

Some men will not want their prostate removed. Others like you will. Also according to recent research, (been on bbc news and radio 2 recently) that men who have slow growing prostate cancer are living the same amount of time without treatment as those that had their prostates removed. Proving that this cancer does not always need treating. Obviously a faster growing cancer needs treating. But for the faster growing cancers or those that have spread, the prostate often cannot been removed anyway due to the risk of spreading the cells.

So no, I don't necessarily agree that the prostate should be removed. It is that mans individual choice.

Roger2Dodger, that is a tough call. 75 is young and really the border line of where they will treat it instead of remove it, or just watch it. The rate of return or problems is about 20 years which will make you 95. Something else will probably kill you by then. My dad died at 95 and my mother is still alive at 92 I have a long life expectancy. You may want to talk with that guy ES28567 and his HIFU procedure.

 

One thing about this forum. Everyone should start off by saying what country they are from. It is hard to mix all that socialized medicine with the US and its great medical institutions and doctors. That is why they all want to come here for treatment. On the day Dr. Patel did my surgery he did 4 others. Only 2 of us where from the US. The rest flew in from Japan, France and Saudi Arabia. Everyone should also go to his web site.

Tybeeman,

i am here in the USA and I can tell your statement is not through. Here, doctors do not have best patient interest at all. They are just money hungry people who are using scare talk to get you consent for surgery ASAP even after the moment when they tell you about prostate Ca and always using patient age for their own gain. I am 51 ant that is what was told to me. Even RO said that radical prostatectomy is far the best choice for me which I totaly do not believe. That is the most aggressive option but nothing less aggressive will be offered for regular patients who can not afford to go and pay 30 -40,000 out of pocket for cyber knife, HIFU or FLA.

i am to the point that I do not want to do anything even with Gleason 7b which is 4+3.

I might go to any of European countries to look for treatment.

I am fairly disappointed in American doctors.

MK

 

Oh Tybeeman,

If you don't read my whole post pointing out and correcting each of your statements, it is because you don't want to face the truth. But others will read what has been posted and that is what's important.

So to correct your last post/lie you directed to me...

"Dude You think I am the one trying to encourage people to have robotic surgery? You come on here trying to make sure they don’t have it."

My efforts have never been to keep men from having a prostatectomy. I have even said (multiple times) in my posts that sometimes a prostatectomy may be the right choise. But unlike you, my posts have told men not to panic, that they have time (in most cases) to do the research, and to be their own best advocate and that there are many choices available (which includes prostatectomy). Then, after doing the research, decide which option is best for them.

I am the voice of reason and you are the voice of panic.

I have already addressed your so called "fact one" in an earlier post so I will move to your "fact two"...

"Fact two that can’t be disputed. If you treat the PC it deteriorates the Prostrate and if the cancer comes back and that is a high percentage, it is a very hard to then have a prostatectomy. It is even called a “savage operation”.

Again, you only tell part of the truth. Your statement should have said...

If you treat the PC (WITH RADIATION THERAPY) it deteriorates the Prostrate and if the cancer comes back it is a very hard to then have a prostatectomy. It is even called a “savage operation”. (HOWEVER, IF IT DOES COME BACK, THERE IS STILL HOPE BECAUSE, INSTEAD OF A SALVAGE OPERATION, MEN CAN ELECT TO HAVE HIFU (EVEN AFTER RADIATION TREATMENT) AND POTENTIALLY AVOID A PROSTATECTOMY YET AGAIN).

With your half truths and distortions of the facts. No one can take any of your posts seriously. Your posts are full of dangerous and misleading information and should be avoided.

Disclaimer: To all those reading these posts I apologize for them being so long but I just couldn't let Tybeeman get away with his shenanigans. Other than actually having the HIFU procedure myself, I am not associated with the HIFU industry in any way. The HIFU procedure is limited in its use and ability and is only for low grade cancer still in the prostate. But in those cases...I truly believe HIFU is a game changer for men.

Good luck to all men who face this terrible disease, and God be with you as you seek whatever course of action is right for you.

Question for you. Why would you have to pay out of pocket? You don’t have insurance?

Yes, I do have an insurance but it covers only surgery RP and radiation EBRT in combo with ADT.

And certainly, I have to stay inside fairly small health system with fairly inexperienced docs to be able to have a coverage.

Well there is no way of giving you any advice on here unless you give your history, age and Gleason score. Plus, every time I give my good experience with surgery I get beat up on here by that mean old ES28567. I think he is old or just grumpy.

Tybeeman, For once you make me laugh.

I have never criticized you for sharing your good experience, only our bad advice. (There's a difference).

Oh, please tell me what age is your definition of "old" and I'll let you know if I qualify. Lol

God be with you too.

Tybeeman, For once you make me laugh.

I have never criticized you for sharing your good experience, only your bad advice. (There's a difference).

Oh, please tell me what age is your definition of "old" and I'll let you know if I qualify. Lol

God be with you too.

0 reply to ES28567

Sorry. I gave it earlier and I am not repeating it again. And, certainly, I was not asking for advice. I just made a statement where I expressed my dissatisfaction with healthcare system here.

MK

Oh sorry you are the 51 that had TURP and then was diagnosed with PC. Why in the hell did they miss the PC before you TURP. With a Gleason score of 7 it has been there a while. I know why you don’t trust the system. I would get me a lawyer to look at your records

I am 56 Based on that I would have a high rate of problems from radiation in 20 years putting me at 76 which in my family is still young.  

You're right when you refer to the different cancers.

There is no one treatment for all PCa.

The treatment that offers the best outcome is a function of:

the aggressiveness of the PCa AND

the age of the man

A gleason 3+3 requires little more than monitroring over time for most men. Whereas say a 4+5 which is what I had, at 50 requires urgent treatment. A high grade PCa is likely to spread and quickly.

That said, if I was 75 I would probably forgo treatment because I would have a good chance of some other ailment killing me before that cancer

did.

It was no reason to do biopsy before TURP. My PSA was only 0.7 and I had normal DRE ever since first one. Urologist performed cystoscopy and found out that medial lobe of prostate is strangulation bladder neck and giving me a lot of LUTS. After this finding, I made decision to have a TURP and after TURP was diagnosed with PCa.

MK

Tybeeman - I admire your tenacity and your approach of not looking back --  one can only look to the future and the positive results that you have to look forward to.  

However, I very much appreciate ES's comments.  He is not advocating or opposing any treatment.  He's offering his knowledge and experience.  He has said that the treatment you got was right for you and for other men.  I don't understand why you are choosing to ignore his comments and continue to tell men that they must get the cancer out of their bodies immediately. That is scientifically unfounded (I don't know but there may be a real psychological reason to think that). Do you really think that your treatment option of complete removal of the prostate is the only option for all men who have been diagnosed with even only a small trace of cancer (I know you think it was the best for you, and that's fine)?

I'm 60 and part of the group that had <5% in 1 of 12 samples, Gleason score 6.  Got the results of my biopsy 2 weeks ago.  My urologist does daVinci total prostate removal.  That's his recommendation.  Maybe that's what I'll do.  I hope not.  Retrograde ejaculation alone horrifies me.  I want to know all of the options.

Please keep an open mind for those of us who have been diagnosed with cancer and don't want to rushed into any one particular procedure without investigating all the options.  Best of luck.  I look forward to continuing to read your posts, ES's posts and all the others taking the time to post their knowledge and experience for the rest of us.  Thanks, Gary