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Diagnosed and conflicted on treatment options

Mike35
Posts: 10
Joined: Feb 2018

Hi all, I'm new to this forum and hope I can receive feedback from this helpful forum.

I'm 56 and just diagnosed with PC in December 2017 using MRI guided biopsy. In total, 2 cores out of 20 had cancer.  2 lesions were targeted in the biopsy: Lesion #1 (right anterior mid transition zone) had 2 of 5 cores with cancer in 20% of tissue with Gleason 7 (4+3).  Lesion #2 (lateral mid transition zone) had 4 cores with only PIN.  MRI showed NO extracapsular involvement in seminal vesicles, lymph nodes or bladder.  Also, NM bone scan was negative.  Current PSA in January 2018 was 7.4 (down from 8 in November 2017).  

My local Connecticut urologist that conducted the guided MRI biopsy recommended surgery.  I got a second opinion from Memorial Sloan Kettering and inquired about their targeted ablation HIFU trial.  The lead trial doctor said I qualified for the trial.  He is only SLIGHTLY leaning towards recommending surgery over HIFU (his oncology nurse seemed more positive about HIFU).  Also went to Yale doctor for a radiation oncology consult.  I've ruled out radiation options.

I'm STUCK between going with the HIFU treatment that seems to have minimal side effects and quick healing time or RP surgery...to just get it out and done with (hopefully).  I keep going back and forth.  Any insights, experience and suggestions are greatly appreciated!

Thank you and be well.

Mike

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi,

Sounds like HIFU is kind a like Proton radiation, it uses a focused beam of energy to kill the cancer.  I guess the question I have if the HIFU was not sucessful, then can other more traditional methods(surgery & radiation) be used at a later date?  I would go with the most experienced hospital & doctors that have done this thousand of times to make sure you get the best team for the HIFU.  A trial group for any kind of treatment kinda raises a flag in my brain.  Is this a proven method at the hospital that you want to go to?  Maybe choose another hospital that they do this as a routine procedure.  Keep doing your homework which will lead you to the best method to deal with your cancer.

Dave 3+4

Mike35
Posts: 10
Joined: Feb 2018

Thanks Dave.  All treatment options remain open with HIFU.  Not a lot of data in the U.S. for HIFU outcomes.  I was hoping some folks that went through the procedure will chime in.  I believe Memorial Sloan Kettering in NY is one of the top hospitals and I would be comfortable with geting RP surgery or HIFU treatment there.  Just can't decide on if I should take the risk and be a HIFU test rabbit.

paulc59
Posts: 10
Joined: Dec 2017

Mike,like yourself i felt like i had to make a decesion fairly quick as i was diagnosed with a 4+3 and a radiologists gave me about a 3 month timeline to act,by the way, a radiologist recomended rp surgery along with my urologist which did put the final touches on my decision. Everything has gone as planned. One night in the hospital,7 days at home with cathedar,except for some stomach pain,muscular,i didnt find the cathedar or that first week that big of a deal.Everyday i felt better and all urinary and bowel functions worked fine.There was a little blood for the first couple of days as expected but none since. I have no retrictions 2 months in.I have some minor dribbling usually from bending over or not reaching the bathroom when when blatter full. I wear a thin depends when out and at work,but my plain jockies while at home.Most importantly my first psa reading read 00.0,so hopefully the cancer it is gone. As always i will address the ed issue. I started on doctors recomendation 20mg of sildenafil-it has done nothing  after a month to generate an erection. because we live in a small home with 2 young teenagers sex was hard to come by anyway so as of yet it has not been an issue with the wife.Her 12 hour work shifts dont help the matter either. We were fully aware i might have to wait 6 months-a year ,whatever for erection to occur we are both 60 and usually to tired for sexanyways. I just wanted the cancer out as quick as possible with limited side efefcts and so far i have been pleased with the rp for what it is worth.For some people that are more sexually active than myself i could see where it could be an issue,but im alive,working,enjoying my kids ,and still have a loving supporting wife.

Mike35
Posts: 10
Joined: Feb 2018

So glad you're doing well after rp. It helps a LOT to hear from someone who had the surgery and doing well. Continued success!

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

I cannot opinion on HIFU as this procedure is old but still in its initial steps and not many report on experiences. In any case, in comparison with surgery, this is not as focal as surgery. The whole area will be involved and receive the blow, including the regional nerve system, the rectum, bladder, and seminal vesicles. The good is that one keeps the organs and tissues in place including the gland and what is within it. The kill must be assured so that the high-intensity sound waves need to be projected with due high intensity enough to kill the cells or it will just treat the wound.

I have no details of MSKCC HIFU trial but I know that in some trials doctors adapt the scope of the trial according to expected results. Guys at MSKCC would not want to have many people with nasty side effects as a conclusion of the trial. In the end, trials are good as they provide the possibility in having novel therapiesfree of charge, assisted by specialists, before, during and after the treatment, and that includes all diagnostics, tests and exams.

Here are old links regarding HIFU;

https://csn.cancer.org/node/188555

https://csn.cancer.org/node/149722

Surgery, on the other end, should be chosen if one is assured of having a contained case. Your Gleason grade 4 raises the flag on risks for existing extracapsular extensions. In your shoes I would investigate further with a PET scan.

Best,

VG

 

Mike35
Posts: 10
Joined: Feb 2018

Thank for reply and the links.  I agree that data is slim and many of the posts here are dated.  I'm thinking that MSK will do additional tests before surgery or HIFU.

Thank you!

Mike

 

Old Salt
Posts: 720
Joined: Aug 2014

Title says it all.

I believe that MSK has a program for this kind of approach, but I don't know if your status would qualify. Active surveillance could be combined with the 'natural' approach that you seem to favor.

As Vasco mentioned, HIFU is still experimental in the USA. And yes, you will be a 'test rabbit'.

Mike35
Posts: 10
Joined: Feb 2018

Thank you for your reply.  Yes, I went to MSK specifically to see if I would qualify for their HIFU trial.  I did qualify...but am going back and forth between surgery and HIFU.  Tough one.

I'm uncomfortable with AS because of my 4+3 Gleason. I figure that HIFU is somewhere in between AS and Surgery.

Below is the link to the MSK focal therapy info and HIFU clinical trial (trial link is under High Intensity Focal Ultrasound section). 

https://www.mskcc.org/cancer-care/types/prostate/treatment/focal-therapies

 

 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I am sorry for your diagnosis.

I assume that the MRI that you received used a 3.0 magnet with greater definition; and not the 1.5 magnet for your fusion biopsy.

Prostate cancer tends to be multi focal, that is , especially with high intermediate 4+3=7. There will probably be areas that are not identified at this time, and will be missed with HIFU.

As part of a research study I was offered targeted HIFU free of charge that I declined.(3+3=6) since I believe that in theory the procedure is a great one, however technology in my opinion is not advanced for best results. 

Aside from studying the procedure, I read a very long thread at usToo webside, that you may wish to read.   Various men who posted had this procedure, but their geasons were less aggressive than yours, and less chance of multifocal.

The side effects from surgery can be greater than any other active treatment.

There is a relatively new radiation called SBRT that many men on this board have done. This procedure hss limited side effect with comparable cure as surgery. There are various machines that deliver SBRT; cyberknife, varian , etc.

Here is a nine year study by Dr Katz, who in in NYC, and you can consult. He has has probably done more sbrt's than any other radiogist. His cure rate for intermediate is 89%

https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

 

Mike35
Posts: 10
Joined: Feb 2018

Yes, it was a 3.0 Tesla MRI was used.  The multifocal concern is real and what is keeping me up and leaning me towards surgery.  Then I think if AS is an option isn't HIFU somewhere in between?

I'm hoping that since I had 10% (2 of 20 cores) with cancer in 20% of the tissue and all other 18 cores were negative.  And that my prior 12 core biopsy was negative 18 months earlier that it is confined to the prostate and target lesion.  Maybe just wishful thinking? 

Thank you, Mike

hopeful and opt...
Posts: 2218
Joined: Apr 2009

As a man who has been in an Active Surveillance protocol since March 09, i closely studied this procedure, and I cannot understand why Active Surveillance would be offered to a 56 yo with a 4+3=7. However if AS is selected as a treatment choice, another biopsy can be  done to determine more information about the extent of the cancer in the prostate; since your fusion biopsy was three dimensional, the doctor has the ability to go back to the exact spot(s) where the 4+3 was located, and biopsy the surrounding tissues of each  ......so if the 4+3 core only consist of what is found, then AS can be a possibliity, however again, with a 4+3 there is a great chance of metasisis in a long term AS program.

Surgery versus Radiation

Surgery is a localized treatment.

With radiation, the perimeter of the treatment can be extended beyond the prostate, so  microscopic cancer that has escaped the prostate and is just beyond the prostate will be treated. The chance of this occurring with a man diagnosed with a 4+3 is high, eventhough the MRI does not indicate this.

....................

You mentioned in one of your posts that you prefer surgery over any radiation.......if I may ask, why is that?

Mike35
Posts: 10
Joined: Feb 2018

Leaning away from radiation treatment because it limits having surgery if reoccurence.  I realize each situation is different but don't like the idea of potential for delayed side effects and recurrence. 

MK1965
Posts: 162
Joined: Jun 2016

If your second opinion confirmed 4+3; you still have chance to be downgraded after surgery and with that in mind you would regret RP and its terrible SE especially for someone young as you are.

I was n same boat 4+3 after biopsy and wanted to stay on AS even against medical advice. Neither urologist nor RO recommendation was AS. While being squished between urologist recommendation and my wife pressure, I made mistake and went into surgery Which I heav regretted. Everything else is well known on this forum.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3225
Joined: May 2012

Mike35,

If you undergo surgery, what usually happens is short-term incontinence (a few months or so, with some potential for light dribble beyond), and six months or more impotence.  Most men without ED before surgery get throught he ED afterward, within a year or thereabout.

MK1965s experience regarding potency is the worst I've ever followed here.  He has an important role here as a voice of worst-case potency outcomes for RP.  Yet even he is testing cured of the cancer (based on PSA results), and recently reported urinary continence had retured for him.  

But it deserves to be said that worst-case also means "not usual case."   For ever critic of RP here among men who have had it, I would say that 90% are pleased.  I've known many men who had RPs, and never heard any one of them complain about anything.

Take your time and consider all options well before confirming a choice,

max,

DaVinci, Jan 2015

 

MK1965
Posts: 162
Joined: Jun 2016

Max,

I am not RPworst case as you said. I am just one of thousands and thousands of patients with bad outcome who continue to suffer loss of quality of life after RP. Erectile function recovery after RP on this forum is heavyly downplayed by some commentators like yourself and your first violins clevelandguy and Grinder. All this forum of good experiences is written by just couple of guys. 

If that is representation of surgical outcome than let’s be it.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3225
Joined: May 2012

Mike 1965,

I'm sorry that you chose to respond with absurd, hysterical commentary.

If "thousands upon thousands" of tragic examples are out there, why is only your voice here characteristic of such a group ?  And why would RP continue to be either the most popular treatment choice today, or tied for most popular ?

If you are not the current "worst case" example of RP impotence at this Board, then who isName that person and I will read his threads today. 

I do not know what sources you use (assuming you use any), but I would be interested in the time frames that this hoard of men got their RPs performed.  Apples must be compared only to apples, not with prunes.  RP surgery today is quite unlike RP 40 years ago, exactly as with radiation technology.  And therefore statistical outcome data from decades ago cannot be used regarding modern results.

This childish back-and-forth is not at all to my taste or personality, but your post was so outrageous that it could not go unchallanged, for the well being of our new readers.

max

MK1965
Posts: 162
Joined: Jun 2016

Max,

if you reread my first response on this tread 4+3, you will see I did not mention single word about my outcome except saying “everyrhing else is known to this forum”.

Honestly, I did not see any reason for stoning me and my outcome.

MK

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi All,

Diddo on what Max said.  Not all RP turn out bad, some do tho depending on the circumstances.  Not fair for one person to come on and bash good outcomes of RP.  There are more than three people on this form that have had succesful RP's.  If you want I can post some bad outcomes from Radiation treaments, ALL TREAMENT OPTIONS HAVE SIDE EFFECTS MK, some worse than others.

MK said:" I am just one of thousands and thousands of patients with bad outcome who continue to suffer loss of quality of life after RP".  I don't agree with that statement at all, based more on emotion than fact.  If Mike35 wants to do some form of radiation treament then go for it. There are several good radiation treatments available but they too have side effects.  
But like most adults you do have to learn to live with your life choices good or bad.  I think MK that when you realize that you are free of cancer and don't have leakage(count your blessings) maybe, just maybe you can move past your unfortunate surgical outcome and embrace life.

Dave 3+4

Josephg
Posts: 147
Joined: Jan 2013

Folks,

I think that we need to calm down a bit here.  The one thing that we need to try to control at all costs are our emotions.  I know, much easier said than done.  We do ourselves and our new readers a disservice, if we let emotion swell up over logic and objectivity in this forum (and life, in general).

Regarding worst outcomes from RP, I probably am closer to that end of the spectrum than the other end.  Read my history here.  I had RP performed at a world class institute by a surgeon with over 2200 previously performed RPs.  My RP was performed over 6 years ago, and I've been totally incontinent and ED since then.  However, prior to surgery, my surgeon asked if my priority was to be hopefully rid of the cancer, or to remain continent without ED, and I told him that removing the cancer was my #1 priority.  So, he proceeded accordingly.

My RP failed, and my subsequent adjunct radiation and hormone therapy failed, as well.  And, I've probably had almost all of the side effects possible, associated with each of these therapies.  HOWEVER, and this is important, I made all of those therapy choices, myself, based upon the best information that I could find, including the very sage advice from members of this forum.  And, I have no regrets.  Why, because I can still lead a fairly normal lifestyle and participate in most of the activites that I enjoyed, prior to my PCa (with the one obvious exception).

If I had not chosen to aggressively fight this PCa with all of the tools currently available, today, I would most likely be suffering in stage 4 PCA, looking at 1-2 years of remaining life.  Instead, I am living a very good life, with a projected 10-15 (12 median) years of life left before PCa kills me.  And, that does not include any provision for new therapies that will most likely become available over the next 10 years.

I am quite content at this point in my life, and I live every day and year, as if it is my last, and that is something that I did not do, prior to PCa.  Respectfully submitted for your consideration.

Mike35
Posts: 10
Joined: Feb 2018

Thank you for your perspective and best wishes for happiness in your journey.

lighterwood67's picture
lighterwood67
Posts: 179
Joined: Feb 2018

I am going for my RP on 03/20/2018.  I am 67 years old.  Gleason 4+3=7.  To me you cut right to the point.  We can always build a better plane, but sooner or later you are going to have to fly that plane.  It is what it is.  Cancer is the primary target.  Repercussions are secondary.  Best wishes.

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi all,

Very well said Josephg, seems your RP did not go well but your getting on with life just like we all should. I feel you should always look forward towards the next challenge.

Dave 3+4

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Yes Joseph, Not a good idea to go on and on about surgery at this thread,.......discussion about the side effects of surgery versus other treatments can be at a separate thread exculsively devoted to thevtopic.

All..........have a great weekend...........time for a glass.

ASAdvocate
Posts: 112
Joined: Apr 2017

One of the biggest myths about prostate cancer treatment is the pro-surgery talking point that "you can't have surgery if radiation fails".

Yeah, but so what?

Cryotherapy, HIFU, FLA, IRE, SBRT, and HDRBT have all been proven effective for salvage treatment if primary radiation fails.  Did your urologist (surgeon) discuss these options with you? I thought not!

IMHO, you need to ask many more questions before ruling out any treatments.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Additionally the side effects from radiation occur less often and are generally less significant than surgery

jeneric82
Posts: 18
Joined: Jan 2018

This is the same information that I have gotten from both of the radiological oncology consults that I have had so far for my PCa.  One of the deciding factors for me was also that both doctors stated that ED symptoms from radiation are frequently helped by medications (Viagra, etc.) while ED from RP is typically not. As a 51 year old with a happily active sex life, this was an important factor to me.

phaedrus840
Posts: 4
Joined: Feb 2018

Mike -

I seriously considered HIFU, but went with RP, and am glad I did.  I had a known tumor (3+4) in the right lobe of the prostate, but was concerned if I had the HIFU that there might also be some cancer in the left lobe.  I didn't want to go through all this again.  Post surgical examination revealed a second tumor in the left lobe.  Had I not had the RP, that cancer likely would have grown and I'd have to repeat this whole process over again.  HIFU looked like the best solution to me - and was willing to pay the $20K dollars to get it done myself (some insurance will not pay for HIFU), but until the prostate can be accurately visualized for tumors, I'm not sure it is the way to go.

Old Salt
Posts: 720
Joined: Aug 2014

Just because of the reasons you mentioned, HIFU is considered experimental in the USA and not recommended by the American Urological Association:

 

HIFU and Focal Therapy

  1. Clinicians should inform those localized prostate cancer patients considering focal therapy or HIFU that these treatment options lack robust evidence of efficacy. (Expert Opinion)
  2. Clinicians should inform localized prostate cancer patients who are considering HIFU that even though HIFU is approved by the FDA for the destruction of prostate tissue, it is not approved explicitly for the treatment of prostate cancer (Expert Opinion).
  3. Clinicians should advise localized prostate cancer patients considering HIFU that tumor location may influence oncologic outcome. Limiting apical treatment to minimize morbidity increases the risk of cancer persistence. (Moderate Recommendation; Evidence Level: Grade C)
  4. As prostate cancer is often multifocal, clinicians should inform localized prostate cancer patients considering focal therapy that focal therapy may not be curative and that further treatment for prostate cancer may be necessary. (Expert Opinion)

 

Mike35
Posts: 10
Joined: Feb 2018

Yes, that is my concern as well. HIFU, radiation and all other treatments that keep the prostate in the body seem more risky (to me).  I'm getting another MRI and fusion biopsy this month to make a final decision. 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Radiation cure rate is comparable to surgery with less side effects.....when we are diagnosed, we simply want to get rid of the cancer, thus many including you, look to surgery.

Targeted HIFU may not cure since technology in my opinion is not advanced to determine multi-focal cancers, and is less likely to cure.

Instead of having another MRI and fusion biopsy, why not use the previous MRI and go back to the spot where the 4+3 is located and biopsy the areas surounding the 4+3, as well as other suspicious lessions and random.....the  targeted , three dimensional biopsy that you had , has this capability....and in my laymans opinion will provide a better understanding of what is going on.

 

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi All,

Hopeful wrote "Radiation cure rate is comparable to surgery with less side effects" is not really a completely true statement, let me clarify.  Surgery and radiation treaments have different side effects.  Surgery side effects usually start right after surgery and then get better over time(hopefully) where radiation has less side effects after treament but can develop stronger side effects in the coming months and years.  Here are just a few of the later side effects of the various forms of radiation treaments:

Buzzworth Nov 2017:  It has been three years since I went through cyberknife for prostate cancer.  All is well and my PSA has dropped to acceptable levels almost immediately after the procedures.  Since then I have always encountered a burning sensation while urinating.

Rob Lee Jan. 2018: I completed eight weeks of radiation last October and the side effects are just now finally wearing off, specifically the proctitis that happens with some men. Diarrhea started my second week and by the end of Tx I was bleeding rectally. I don't know exactly what you mean by abdominal pain, but for many weeks I would go all day feeling like I had to defecate, and often would several times a day. Often there was a lot of gas too.

Max Jan. 2018:  I asked him about a friend who had received radiation years ago and later had to periodically have his colon cauterized to stop bleeding.  The surgeon told me that this was extremely common, he had done many such cauterizations on men who had received PCa radiation over the years.  

Vasco Jan. 2018: Radiation treatments for PCa typically create scar tissue in the urethra and bladder. In most of the cases these areas burst into wounds causing bleeding till it repairs by itself. There is no fixed period on occurrences and many guys experience bleeding many years after treatment. Doctors call it RT late side effects

Bluepac6 Feb 2018:  The radiation I 2011 had damaged my urethra and bladder beyond repair and my only choices were to wear a catheter bag out my penis the rest of my life or have bad part of urethra removed and my bladder removed.

Joesephg Feb 2018:  My condition was diagnosed as hematuria, and my Urologist advised that this is not an uncommon occurrence for people who have received radiation therapy near the bladder. 

Las711 March 2018:  Just had 39 tretments Prostate Radiation 4 months ago.. All went well PSA now at .08.. but I now have Radiation Proctitis.. Lower bowel area.. Dealing with it using Surcaltate enemas.. 

Surgery has side effects as well, ED & urine leakage, sometimes severe, sometime not.  I am sure that you could find just as many bad turnouts for surgery as I have listed above for radiation.  I guess my point is both surgery & radiation treaments have different side efffects and you need to understand them before you make your choice.  Your side effects also depend on the doctor(s) you choose + the facility, and how much cancer needs to be removed, so choose wisely and take your time.  Whether you choose surgery or radiation be prepared to live with the side effects, sometimes mild, sometimes severe depending on each individual case.  Some people think I am a advocate for surgery and I am not.  I am an advocate for free choice based on the correct facts and not someones idea of how they think it is.  We can each only talk here about what our doctors have told us and our own experiences dealing with these treaments.

I wish there was a treament that had no side effects and got rid of my cancer, I would have chosen it hands down.

Dave 3+4

Steve1961
Posts: 199
Joined: Dec 2017

just saying seems like a lot of radiation bashing going on here ...which is fine ...but who did the radition...where was it done ....I think this has a lot to do with it ....radition treatment has come along way ..its safer now and on a lot of cases has better cure rates than surgury as well...I can’t remmember where I saw the number but radition treatment and I don’t mean alone I mean combo Ibr and EBR  seem to be catching up to surguries.    The combo seems to do a real number on a lot of organ confined cancers ....I know here  in the San Francisco Bay Area. Stanford and UCSF #8 and #4 respectively are book 3 months out for brachytherapy combo ....must mean something And I was told by both the cure rates are over 90 % ..something to think about ....surgury isn’t always guaranteed either ....that’s for sure 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

We all know that you think that surgery is better than apple pie.

Instead of taking comments from this site from other advocates of surgery as you are, and comments out of context from others and also out of context from those who have had sugery, I suggest that you show research based information that will support your claims.

Addtionally time and time again you are not direct and use generalities that indicates different than what is true, specifically surgery side effects are generally greater and happen more often than other treatments. Above you said, " Surgery and radiation treaments have different side effects" This is true but misleading.

HAVE A NICE DAY

MK1965
Posts: 162
Joined: Jun 2016

Bravo for hopeful and optimistic!

Thank you so much for your bravery for replying to Clevelandguy.

I could not say it better. He is 125 % pro surgery guy and he is blaming my mental state for my bad surgical outcome.

He put in order bad radiation SE but couldn’t do it for surgery and still blaming others for calling him out for being pro surgery.

On whole this forum, I see only 3 guys who are talking good about surgery and chocking my every post that I comment on.

RP surgery is mistake for many prostate Ca patients.

MK

Clevelandguy
Posts: 415
Joined: Jun 2015

Again Hopeful, your comments are misleading and based on your opinion.  The comments that I posted are from actual users on this forum not something I made up.  People here need to get the straight facts based on the people's experience of this forum, studies, and the actual manufactures of both surgical & radiation equipment, not opinions. People know that both radiation & surgery have similar longevity results, various online doctor studies have proved that, but it's all about the side effects, sometimes long lasting and debilitating.  I don't think surgery is better than apple pie, both surgery & radiation have side effects sometimes serious, but I do like apple pie with a small dab of vanilla ice cream on top.

Dave 3+4

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Instead of cannibalism this thread, as you and the other surgery advocates have done on others, why not start a new thread devoted to this subject. 

JJO
Posts: 10
Joined: Sep 2017

That would actually be  pretty useful thread:  discussion the evidence out there as to which treatments have more or less side effects.  When I was investigating treatment options (I eventually chose active surveillence) I was told by all the doctors that radiation and surgery have the same rates of incontinence and ED.  That, however, doesn't make it true.  

lighterwood67's picture
lighterwood67
Posts: 179
Joined: Feb 2018

It is your body, your mind, your cancer, your choice.  It is your choice, right or wrong.  If you cannot make a decision, that is a decision in itself.  This is a wonderful site with a lot of great information, but the bottom line comes down to me.  What do I want to do?  What are the specialists telling me?  Y'all be thinking about me when I go in on March 20 to try and make sure this 300lb gorilla that is trying to escape my prostate doesn't.  I am an old retired Air Force Chief Master Sergeant.  I have seen many different models of airplanes that have been made better.  But when it is all said and done you are going to have and fly that airplane eventually.  Good luck to you folks and best wishes.

 

 

 

 

Grinder
Posts: 437
Joined: Mar 2017

Pie? I like pie. You better give me some pie if you bring it up again. 

Grinder
Posts: 437
Joined: Mar 2017

Instead of promoting or disparaging one treatment over another, we have to consider the variables that make successful treatments versus perceived unsuccessful ones.

The fact that there is BOTH says the are variables in play. If CG says his surgery is successful without lasting side effects, but MK is angry that his was unsuccessful and has permanent ED as he claims.. THEN WHAT WAS DIFFERENT? 

I kept tyring to get MK to pinpoint the variable that made his unsuccessful, but he continued to react emotionally and condemn RP wholesale. This is what is irritating for us because we cannot get to the bottom of his bad results to warn others to avoid THAT PARTICULAR SITUATION rather than just condemn radical prostatectomy.

But CG and myself did not have severe permanent side effects, so that is self evident PROOF that it is a useful treatment in some cases, but maybe not in others.

If anyone wants to condemn DaVinci RP, then let them bring the variables to light that will allow a PC patient to look at those variables and decide if they apply to HIS PARTICULAR SITUATION.

I suspect the most likely variable is Davinci experience of the surgeon. If you read into the archives, for both instances of RP AND Radiation, thete is a CORRELATION between experience of the surgeon/ oncologist and the incidence of side effects.

Emotion plays no part in science. There is only variables and how they effect outcomes.

gjw54
Posts: 2
Joined: Feb 2018

Interesting discussion.  

Yes, that's what drives a person crazy about this disease: too many choices, starting with one of the most basic of all -- surgery versus radiation versus surveillance.

Personally, I went the surgery route myself, a couple months ago, and so far so good.  Except of course it hasn't been "far" at all yet.  Long way to go still.

That said, to this point the side effects with regard to continence have been minimal -- (knock on wood).  ED is a bit of an issue but there've already been signs of life, so to speak, in that department as well. 

Moreover, pathology showed the cancer was organ-confined, which was a big relief.  The major negative news: the Gleason number was upgraded to high-risk, which I guess increases the chances of biochemical recurrence.  We'll see.

Going back to the choice of treatment, I definitely wrestled with the decision.  I would have jumped on surveillance had it been remotely an option, but since the biopsy indicated Gleason 4-3, the docs took that off the table.

Radiation was tempting.  Somehow it seemed less scary and drastic than surgery.  However, because of the Gleason score, the docs wanted me to do six months of HT in addition.  The possible side effects of that, both during treatment and for several months afterward, were a major negative consideration.

In the end, I went with surgery because I'm lucky enough to live very near a top hospital with an outstanding urology department and some of the best urologic surgeons in the country.  For me, this proved the decisive factor.

So I think the issue is far from simple.  (Indeed, nothing seems to be simple with prostate cancer.)  Guys should ask themselves (and their doctors) whether there's a good chance the cancer is organ-confined.  If not, surgery may not be the best way to go, as you may well end up needing radiation in the end anyway.

Also, if radiation is the initial treatment choice, will I need HT to go with it?  If so, then add that in when weighing the package of side effects.

And critically, do I have access to a very skilled and experienced surgeon, with a demonstrated track record of success in performing this difficult operation?  If not, then you're taking a big chance with surgery.

Anyway, a lot of you guys know much more about this whole thing than I, but hopefully you won't mind me throwing my two cents in.  I've been pretty lucky so far, and I just hope my luck holds.    

 

 

 

Clevelandguy
Posts: 415
Joined: Jun 2015

Good summation gjw, sounds like you did your homework and went ahead with the best treatment for you.  Hopefully you have many undectable psa readings in your future.

Dave 3+4

 

Old Salt
Posts: 720
Joined: Aug 2014

Thoughtful post; we can always use more of those (and fewer 'extreme' ones). 

Especially for newbies, read science based (!) papers and recommendations from authorities (ACS, NCI, AUA etc.).

gjw54
Posts: 2
Joined: Feb 2018

Thanks, Cleve.  The irony is that if the docs and I knew my Gleason were 4+5, as indicated by post-op pathology, rather than the biopsy's 4+3, then the treatment calculation might have been different.  But that's water over the dam.  Anyway, so far, thank God, it's worked out OK.  (So far.)

As for follow-on PSA's, I don't know, life is pretty good -- already back to more or less "normal" -- at this point.  I wonder if I might just "forget" to get the PSA's and live happily ever after.  Haha!

But seriously, no such luck.  Because even if I "forget," it is certain that my wife will not.  Wink

 

 

 

Pontiac69
Posts: 2
Joined: Mar 2018

I WAS 58 YEARS OLD WHEN I WAS TOLD I HAVE PROSTATE CANCER!!!IT IS THE END!! NO IT IS NOT.I WENT TO A RADIATION ONG. AND HE SAID WITH MY NUMBERS OF 8.2.IF WE'RE HIM HE WOULD GO TO A THROUGH SURGERY.I DID BUT IF YOU ARE WORRIED ABOUT THE SEXUAL PART,THE PILL AND A MEDICAL VACUMN PUMP AND THOUGHT-YOU ARE ALIVE AND DO T HAVE IT INSIDE YOU AS I TYPE THIS I AM IN MY 2ND WEEK OF 9 WEEKS OF HI DOSE RADIATION.I HAD SURGERY IN 2011 BUT THE CANCER CAME BACK IN 2017.OH WELL TIME TO KICK ITS BUT AGAIN.LISTEN WHAT EVER CHOICE YOU MAKE,MAKE IT YOUR CHOICE!!!!!! HAPPY BIRTHDAY,PAT

Mike35
Posts: 10
Joined: Feb 2018

As my previous posts and the many responses indicated, I struggled to decide best course of action. Age 57 with 1 lesion 4+3 gleason (<15% confined to prostate) with 8 psa. I looked into HIFU trial, radiation and surgery options. Got kicked out of HIFU trial due to increased gleason 5+4 during required biopsy. That pushed me towards surgery...my doctor was very confident that RP surgery would have a favorable outcome due to location, size and stage. He also didn't believe it had spread outside the prostate (based on biopsy, MRI and bone scan). Overall pain was manageable and once the catheter was removed (worst part) I was able to get hard-ish within 5 days. The next week even better with and without pills. By week 3 good hardness with pills. Leakage was an issue for the first 2 weeks (but very manageable with pads) and now hardly any leakage.  I never though that within 4 weeks I'd be in this good shape and improving. I know I am lucky.  Based on everything I had read...if you decide to go with RP make sure you get a doctor that does many of these procedures and is affiliated with a top hospital.  I can't say enough good things about Memorial Sloan Kettering and Dr. Ehdaie.  Now we wait for psa levels at the end of June....wish me luck!   

MK1965
Posts: 162
Joined: Jun 2016

Mike,

I am glad you are recovering well and better then you expected. You are probably the fastest in reporting erectile function recoveryon this forum  in just short 3-4 weeks after surgery. You are extremely lucky guy.

I wish your recovery will con with upward curve.

MK

Clevelandguy
Posts: 415
Joined: Jun 2015

Great news, continue to get better.

Dave 3+4

Grinder
Posts: 437
Joined: Mar 2017

" I never though that within 4 weeks I'd be in this good shape and improving. I know I am lucky.  Based on everything I had read...if you decide to go with RP make sure you get a doctor that does many of these procedures and is affiliated with a top hospital.  "

Just my opinion... judging from yours and other very recent Prostatectomy experiennces being reported, it sounds like surgeons are getting ever more expert at narve sparing whenever possible. Recovery times are getting shorter, that seems to be trend now. If the cancer is confined to the prostate, there is no reason why every operation cannot be just this successful. 

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