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Treatment options: What would you have done differently if you could do over?

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Posted 4/10/2009 10:06 AM (GMT -8)

Hello all,

I'm a new member to the forum.  It's been not quite a month since I got the pathology report of my biopsy that confirmed the presence of PCa.  Like probably everyone else that's gone through this before, my head is spinning with information overload, some trustworthy, some not, and with too much advice from well-intentioned relatives and friends.

So what I'd like to find out is, of those of you that have a similar profile to myself (mid-50s and otherwise generally healthy), which treatment option did you select that in hindsight, or with the benefit of new information, you might have selected differently?  Or, what post-treatment information do you wish you had known sooner that would have helped with your recovery?

Posted 4/10/2009 10:37 AM (GMT -8)
Hi 55,
The onlything I would have done differently would have been less ignorant about the disease when I was younger. This is coming from a guy that has advanced prostate cancer in his 40's. I wished I knew at age 40 or earlier about what I know now.

You are doing a great job on your research. Whatever it is you decide to do is what should be best for your own piece of mind. Welcome to HealingWell. You will find plenty of experience to draw from here. And you are most welcome to ask anything...

Tony
Posted 4/10/2009 11:47 AM (GMT -8)
I would not have bought the hype of the Da Vinci method of surgery. It was hardly pain free, it was a substantial recovery and the continence and ED results matched exactly what open surgery offered. Don't get me wrong, I'm fine that I did it, but I would not have gone into the whole event thinking that my DaVinci was superior to an open procedure. They are both fine and they both work.

I had ED bounce - great sex at 8 weeks then the erections disappeared. I would have been FAR more aggressive in getting the help I needed. Because I had had erections, the surgeon dismissed their disappearance as in my head. I would have pursued injections, trimix gel, etc. I am doing much better now, but I think i lost time because I downplayed the disappearance of erections.

I AM Glad I am still with a PCa support group in real life. Internet is great, but take this time to build some really solid, meaningful relationships with guys - if you don't have lots of that already. I am also glad that PCa has changed my life for the better. I am a better man for having gone through this.
Paul
Posted 4/10/2009 12:16 PM (GMT -8)
I am not sure I have any regrets or that I would have done anything different. I did not do much research but I did do enough for my satisfaction. Looking back I feel that my decisions were right even though they did not agree with everyone around me. I had plenty of "I know what I would do if it were me", but the reality is, it was me not them. I placed my total faith and prayer into the wisdom and discernment from God. I am at peace with everything. No regrets.

peace and love
dale
Posted 4/10/2009 12:34 PM (GMT -8)
Hi 55,
The question you asked "what would you have done differently?" is really not valid as most individuals have a psychological vested interest in promoting the treatment decision they went through even though it may not have met their expectations. This is human nature. In marketing they call it cognitive dissonance.
The best thing you can do is your own research and come to your own conclusions as to the side affects you are willing to risk or incur since most treatment options have the same results over a 10 year period.
The PCRI.org web site has a lot of information on options and their side affects and a lot of published papers on all of the treatments.
Read Walsh's or Sardino's books on surgery, Danatoli's book on Brachatherapy and IMRT, Charles Meyer's book on Hormone therapy and Stephen Stum's Primer on Prostate Cancer.
These plus the PCRI and YANA web sites should give you a good idea of all the treatments and their affects.
The most important step is to have your cancer properly staged through imaging systems like MRIS and color doppler because it is important to know exactly where the tumors are located and the agressiveness. A prostate oncologist can help you as he can fairly evaluate you and recommend a treatment as he doesn't have a vested interest in any of the treatment options. You are off to a good start by getting opinions from doctors in different fields. Be careful and get recommendations from doctors that are not connected to one another as there is a built in conflit of interest in challanging a recommendation from the doctor that referred you.
JohnT
Posted 4/10/2009 12:36 PM (GMT -8)
Nothing thing different except maybe listen to the wife sooner. If she hadn't griped I'd be regretting a whole lot by now.

Paul
Posted 4/10/2009 12:55 PM (GMT -8)
I'm not in my fifties but in my case I think I made the right decision. I have aggressive prostate but no evidence of spreading beyond the capsule. I chose surgery (Da Vinci) because if spreading has occurred in the pathology report, I can still do radiation and hormone therapy. Doing salvage surgery after radiation is not an easy thing to do. By the way, my Da vinci was not bad at all. I was in the hospital for one day. I started walking 1 mile on the 3rd day. increased it 2 miles on the fourth. The catheter was removed after 8 days and I started walking 4-5 miles each day.
Posted 4/10/2009 1:10 PM (GMT -8)
I would not have changed anything in regard to the surgery but I would have pushed for using injections sooner. If the ED pills don't work at 3 months, you should be trying the injections. If the Caverject or Edex is absolutely painful, switch to the Trimix or Bimix as soon as possible.

I feel that I wasted time on ED recovery by not moving to the next step sooner. Needles don't bother me nor does the injecting. My partner thinks the injection and the hardness time (1 to 2 hours) is great.
Posted 4/10/2009 1:46 PM (GMT -8)
Hello and welcome here, 55:

No regrets on my treatment after I had the PCa dx last August.

I do wish I had my first biopsy earlier, instead of age 56, instead of age 50 when I started them, my PSA was high for my age to start with, and the velocity picked up speed with each passing year. Perhaps my cancer could have been caught at a lower grade instead of a more agressive 7.

David in SC

PS: I don't even blame my GP of 13 years, as he was going by the accepted standard of PSA 4.0 for a biopsy, and there was no PC in either side of my family.
Posted 4/10/2009 4:46 PM (GMT -8)
I would have done nothing different. I am extremely pleased with how things worked out and in my fantastic recovery in continence and erections !!
Posted 4/10/2009 5:30 PM (GMT -8)
My RP was in 1995 at age 55. Gleason 2+1. (Lower gleason than most others) I was continent four days after the catheter was removed. ( A real plus for me) I attribute this to good advice from my GP who said to do kegels many many years before my RP. My ED has been a problem but the injection method (Edex) has worked great over the last decade.  My PC became recurrent after a couple of years post RP so the surgery did not get it all even though I felt "outta there" was the best option. Watchful waiting , radiation and hormone therapy are still available to me. With the advice of two urologists I have chosen watchful waiting so far, as my psa has sowly risen to 0.6 over the last decade. Looking back I would have done the same thing. Best wishes, Al
Posted 4/10/2009 9:33 PM (GMT -8)

Points To Consider Here:

(1) Davinci Surgery is no better than open surgery in terms of long term outcomes for incontinence and impotency. In fact studies show that Davinci patients have a much higher dissatisfaction with outcomes than those who have open surgery or radiation but that's because the Davinci video leads you to believe everything will be *** dory and back to normal after this simple procedure. Wrong! Lots of men with bilateral nerve sparing surgeries  will still have issues with incontinence and impotency.  Still, as of 09/11/08 in my area Davinci Surgery was a faster recovery: open- 3-4 days in hospital, catheter in 2 weeks, go back to work after one month from catheter removal, DaVinci- 1 night in hospital, catheter in 8 days, I went back to work 3 days after catheter came out. If you are rich or retired this doesn't mean much to you but I am 52, wife doesn't work, I am a poor guy, can't afford to be away from work for a month, no AFLAC duck at my job, needed to get back to work ASAP.  Also, my local urologist was the "king" of the open surgery, but I really didn't trust him even though I had gone to him for yearly PSA's and DRE's for 17 years. Every year I would have to blow a half a day of work for my annual visit, he was always coming late from surgery to see his patients, appointments meant nothing to him. Whether you had a 830,930,1030 appointment he never showed up til after 1100 year after year. I felt he was in it only for the money. I mean we all want to make money but my time is valuable too.  The final deciding factor against using the local "king" versus going out of town for Davinci was the "king's" physician assistant telling me what he would do after I had my second prostate biopsy which turned out to be cancerous. And I quote "Oh I would never have a robot operate on me. Dr. "King" has done thousands of open prostatecomies. He is so good at it that he can knock one out in less than an hour." Well I am glad he can do 8 prostatectomies/day but what about trying to save my nerves so I can have some kind of normal life?

(2) The more experience with either surgery (if you choose surgery) the better. Again I am a poor guy, the best I could do was go to a town 70 miles away from my town of 500,000 (where nobody  does Davinci) and find the guy with the most Davinci experience, which was over 300 surgeries. If I had been a RICH GUY I would have gone to somebody who had done a whole lot more of these surgeries, like Randy Fagin in Austin, or maybe somebody in Houston or New York. Some of these guys have done over a thousand of these surgeries.

(3) Most guys after surgery will have incontinence and impotency, the question is for how long? My incontinence was gone in 3 months, my ED remains after 6 months out. I am still using trimix injections for sex, but things are better, I am using 1/2 the dosage I use to use for a good erection and there is some signs now of spontanteous erections. I hope to get by with the oral pills some day. Guys who go for radiation, proton therapy, HIFU, cryo seem to have much lower rates of incontinence and impotency at least initally. 3 years out the rate of impotency for surgery versus radiation seems to be about the same.

(4)If you do radiation first and your PSA starts to rise salvage prostatectomy is a real mess. There are major complications like fistulas and repeat repair surgeries. Usually you have to go on to anti-hormonal therapy and if that fails chemotherapy.

(5)For guys with low Gleason scores, 6 or less,  and low cancer volumes doing nothing (watchful waiting) and  havng repeat PSA"s and biopsies is an option since these types of cancers grow slowly and may never cause a problem. I was too paranoid for this option, both of my parents died of cancer, I had to get it out, but that is just me.  Good luck on your decision!

Posted 4/11/2009 8:04 AM (GMT -8)

Hi 55:

Per John T's excellent response, I'm sure I have cognitive dissonance re my procedure...i.e. I'm sure I made the right choice, everything is great, blah, blah, blah, etc, etc. etc.

However, having said that, there are some things that I have learned on this forum that I would do differently pre-procedure:

1.  I would insist on a more complete biopsy, e.g. color doppler or 3D Mapping.  I had a 16 core, which is more than many men who have fewer cores but certainly not an extensive as the newer biopsy methods.  I would have wanted more info about the extent of my cancer.

2.  Depending on the outcome of the more extensive biopsy, I would have seriously considered TFT (see realziggy's thread for a video).  I had never heard of that before I came to this forum but, if it turned out I was a candidate, that is something in which I would have been interested in exploring.

Hindsight is great and, all things considered, i think I did a pretty good job of researching options and am comfortable that my choice was right for me (cognitive dissonance).  Still, you and other newbies have the benefit of finding this site pre-procedure and taking advantage of new info.

Best of luck...let us know what you decide.

Tudpock

Posted 4/11/2009 8:48 AM (GMT -8)
I don't think I would have done anything differently after being diagnosed.  I did a lot of research, saw 3 leading surgeons and chose with the help of prayer, the road that I thought would give me the best chance.  I wasn't suppose to have negative margins and was told it had spread, but I would not have known that I had negative margins without the surgery.  I will never regret my choice.  I have had 2 good years after being told that I had only 5 left at the beginning.  As Dr. Fray Marshall said at Emory, I have confounded the experts.

One thing I would have done pre diagnosis, would be to keep up with my psa numbers and not rely on the "your under 4 and within normal limits" nono   I have told everyone that will listen to keep up with their numbers and an make notice of a rise from one year to the next no matter how much it is under 4.

Ron

Posted 4/11/2009 1:44 PM (GMT -8)
I agree with the posts above. John1959 is right in that if you choose surgery, keep in mind it is MAJOR surgery and there is time/pain involved in the healing process. I recently had a friend diagnosed and I told him I chose surgery because it was right for me (psychologically I wanted the prostate out of me). I don't think my mind could have been changed. Also, I think I spent way too much time on the computer and a way too many websites. I drove myself crazy with what if's. If I could do one thing over it would be pick some reputable websites (like this one) and some websites to gain access to information. Like tony said above, know the disease. I think it is important to know the disease and be able to understand and ask questions.

Good luck to you.
Posted 4/11/2009 7:10 PM (GMT -8)
Well I am happy that I chose surgery, simply because salvage radiation is a curative backup in case that surgery does not get it all (as happened in my case).  That happiness outweighs a few nits that maybe I would do differently..maybe not.

Maybe I should have been a little more aggressive in pursuing radiation after I knew my staging.

Maybe I could have had hormone therapy at the same time as radiation.

But these are relative nits.

Posted 4/12/2009 4:29 PM (GMT -8)
55:

Look at my stats. I started as a Gleason 7, afterwards discovered it was 9 and I had a pT3a tumor. Most of these guys have heard my story before. Given my situation, I'm pretty much convinced I HAD no other choice. I was apparently weeks away from the cancer breaking out of my prostate and then who knows what? Radiation MIGHT have worked, other treatments MIGHT have worked, but I wanted to start with getting that chunk of cancer out of my body.

I have no regrets about my decision. 11 months post op I still wear one pad a day, and am still trying to return to full sexual activity. Do I love it? No. Do I accept it? Yes. Does it slow me down? No. You have to do what is best for you, and move on.

I was told point blank what the side effects were, that there were no guarantees of anything, and that all men heal differently. Once the surgeon gets in there, he may have to carve out more than he expected. So I knew going in what the risks were.

Da Vinci's major promise is faster recovery and less pain. Instead of slicing thru major abdominal muscles, they make 5 small puncture entries which heal up much faster. I was told the average recovery time for Da Vinci was 4 weeks, and the average for open surgery is 6 weeks. I was told open surgery usually means about 2 pints of blood lost. Da Vinci is zero. As one who has had arthroscopic shoulder and knee surgery, I can tell you that the Da Vinci procedure was about, oh, 1,000 times less painful - AND there is no re-hab to go thru. You have not lived until you've had shoulder reconstruction re-hab.

That's just my experience.
kcragman
Posted 4/12/2009 4:39 PM (GMT -8)
All things considered, kcragman, I think you are doing just great. And I agree with your treatment course completely. With your post surgical pathology, you must have been pushing that window of containment right to the very edge, you were most fortunate.

David in SC
Posted 4/13/2009 5:21 PM (GMT -8)
I would have taken a little more time and checked out proton beam treatment more thoroughly. I had decided on two possible treatments. Proton Beam and Da Vinci. I chose Da Vinci because I wanted to know definitely that either it was all out or if not then get on we the next treatment. The prostate gland had to come out for that outcome. Waiting may have given me more confidence in the proton beam but my bet is I would still have gone with the Da Vinci.

Tamu
Posted 4/13/2009 6:25 PM (GMT -8)
Tamu, look at you, your stats are great after 2 1/2 years, I think you did fine.
Posted 4/13/2009 7:15 PM (GMT -8)
Hi 55 and healthy living in NJ,

You are asking the one question we are never supposed to ask ourselves.

Since the option we chose is life-changing, and in many cases irreversible, there can no woulda, coulda, shoulda, later on without the possibility of bitterness.

I had very good reasons for selecting my primary treatment at the time. None of us are as educated about this disease at the time of primary treatment selection as we are later.

I only wish that everyone diagnosed with prostate cancer had to take a course on treatment options and their possible side effects. They should also have to attend a support group, live or on-line, and talk to patients who had every modality of treatment. They should also have an impartial mentor to help separate the wheat from the chaff. But, this is an imperfect world.

Dave
Posted 4/14/2009 9:20 AM (GMT -8)
There is one thing I wish I would have done earlier. See a good Prostate Oncologist. I learned many more things about my cancer and tests available, such as PSA calculations, PC3 urine tests, PAP tests, Color Doppler and Combidex MRI. None of my five previous urlogists ever mentioned any of these to me. The combination of these tests gave me an accurate staging of my cancer and a much better chance of getting a favorable outcome.
JohnT
Posted 4/14/2009 3:30 PM (GMT -8)
We make our treatment decision and live with it. We do our best to investigate the options without getting bogged down and frustrated. Prostate cancer is especially hard to figure which is the best option. Some other cancers are pretty straight forward as far as treatment is concerned. Add to that the special side effects of treatment and its a crap shoot as to which is best.

We all come up with the same three priorities:
1) Live through it
2) Get dry
3) Get it up
Dry jeans and a boner do nothing for a dead man.

My personal method for handling the aftermath of treatment is to look back but don't stare...

Jim
Posted 4/14/2009 4:07 PM (GMT -8)

Perfectly said Jim.  Exactly the most important stuff pared down to its bare bones.  No fluff - just the essentials.

Regards,

Bill

P.S. I really like brevity and clarity.  Perfect.

Posted 4/15/2009 12:24 PM (GMT -8)

Thanks all for your insightful comments.  These, along with the words of wisdom contained in the "Why We Chose Our Treatment Option" and the "Choosing surgery because of salvage radiation option" threads is what I was looking for.

Greg

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