Which treatment????

My Experience

Denis:

This is an anecdotal response to your question; it is my experience.  Hopefully, you will receive several.  I sought both - the best technology and the best surgeon (in my opinion).  That turned out to be a mistake in my situation.

My diagnosis and treatment occurred in 2009.  At that time RALP had not yet spread throughout the medical community.  Not all surgeons were trained on it nor did all medical treatment centers own the device.  That, coupled with its reputation as being the best because it was the technological breakthrough, caused many to advise me to incorporate the DaVinci into my radical prostatectomy procedure.  I was gullable and ignorant.  That was the first time that I had ever had prostate cancer.

First I sought a facility that owned the device.  Then I sought a surgeon with experience.  I went to three surgeons at three different hospitals seeking advice.  I selected the chief of urology at a prestigious educational/research hospital.  At that time he had already performed over 1,000 RALP's.  One of the other surgeons that I consulted had only performed 12, while the third one did not use the robot.

My surgical outcome was successful in that I have never had any recurrence of PCa and my PSA has been undetectable since the surgery.  However, I suffered dearly from surgical complications (thank you DaVinci robot for leaving a piece of plastic inside my bladder) and then from post surgery rebuff from the "busy" surgeon at the prestigious educational/research hospital.  I was so discouraged by the experience that I entertained legal action, only to be told by several law firms that one must die on the table in this state to be successful in a medical tort law suit.

If I could do it over I would select an experienced surgeon who does not use the robot.  I know for a fact that the plastic C clip was discharged into my bladder by the robot, but I am also convinced that Mr. DaVinci also caused me to be completely and totally impotent because it was too aggressive during the procedure.  That could have been the machine or it could have been the man.  Either way, the outcome for me was not positive in terms of quality of life and I attribute that to the robot. 

May the Lord be with you in your decision making process.

Jim

 

Choices

Sub,

I have read most of what airborne has written here over the last few years and find it all to be thoughtful and well-informed.  As he mentined, his tragic "clip" accident during DaVinci is ancedotal -- his one experience.  I have never heard of it before.  It has got to be one of those one-in-a-million occurences.  DaVinci today is the most common form of RP, and what I had.  Usually it is like the old Holiday Inn commercials, "No surprises."   Even Cyberknife, one of the most convenient forms of cancer treatment, has had a few guys write about terrible problems afterward.  Extremely rare, but they happen.   You will never find any form of PCa treatment, whether surgercial or radiation based, that someone did not suffer a personal catastrophy from.  The best you can do is look at usual, ordinary results.

I was told DaVinci would be "less painful," but recall waking up in the post-op and thinking "Less painful than WHAT ! Being eaten by a lion ?"  It did hurt badly, but only for about 2 days.  Cutting a man open and stretching his abdomen wide enough to do all of that stuff is going to hurt, regardless of technique. "Medical mistakes" is one of the leading causes of death in the US. They just happen.  They can never be worried away.

I do not advocate for or against any form of PCa treatment.  I share that my DaVinci went well, and that I began urinary control within a few days after cath removal, and was having sex in under a year.  But it did impaire me, hell yes.  The fact is that for cure of early stage PCa's contained in the gland, surgery and radiation are equal in cure rates, virtually identical.  Beyond that,  it is side-effects to discuss.

Whatever you do, there will be consequences later, there will be second-guessing. That cannot ever by analyzed away.  No amount of "data" on earth will prevent it.   I wish you the best treatment experience ever,

max

No Problems.

Denis,

I also had robotic surgery and had no porblems.  Complications from an abdominal hernia repair (mesh and staples), and extreme muscle developemnt in my thighs from road cycling made my surgery take 5 1/2 hours.  It took my surgeon a long time to find the lymph nodes in my right groin.  Then he had the robot do mirror image and went directly to the lymph nodes on the left side.  I will say that my surgeon warned me at 10:30 the night of the surgery that I would probably develop a hernia in my right groin, because he was in that area so long.  That Hernia did develop as did a benign fatty tumor.  Those were both taken care of 3 1/2 years post surgery after the Hernia started causing problems.  I went home from the hospital late afternoon, the day following the robotic surgery and was on a treadmill two days later. Back on a Spinner Bike 6 weeks later.  Had slight incontinence for the first two years, but now, at 4 years post diagnosis That has stopped.  My surgeon insisted that I also talk to a Radiation Oncologist about implanted seeds and those treatments.  I did and decided I wanted the cancer removed.  I had to have Hormone Therapy for two full years and 40 Radiation treatments as clean up to the prostate cavity.  My GP, my Chemo Oncologist, My Radiation Oncologist  all agree that the surgery was rigth for me.  I started with a PSA of 69, Gleason 3+4-7 when diagnosed.  I had had no symptoms.  The cancer was found by accident.  Post surgery showed 40% involvment of the prostate and one very tiny spot in one lymph node.  It was so small that it hadn't shown up in my pre surgery MRI's.  I am/was a Stage pT3bN1.  That's about one "tick" from a Stage 4.  Since my PSA is now back up in the normal range My PSA is still below 0.5. That is 4 years post diagnosis.  My PSA was holding at <0.010. Then after I've been off the Lupron for almost 2 years, My PSA has come up a bit, but the last tests have shown that the rate of increase has slowed to half of what it was.  This is what my doctors were hoping would happen.  My doctors are now talking future plans for 2022, and even as far as 2030. 

I can not and will not tell you what to do.  We are not doctors.  I can share my experiences with you .  I will tell you to study all the options and try and decide what is best for your situation.  We all all different and our situatiosn are all different.  

These are hard decisions and this is a hard fight.  But hang in there and fight this beast with all your might.

Best of luck

Love, Peace and God Bless

Will

I chose Cyberknife treatment
I don't know your age so that could be a factor in your decision process. I was diagnosed at 52 with 2 cores positive of 12, 3+3 and 3+4 so intermediate risk. My urologist immediately had me scheduled for surgery which I was going down the path to perform. I found this forum and also had a PCP who gave me lots of options, never rendered an opinion, but the range of 4 -5 alternatives was useful and he gave me contacts for each option. In my due diligence, I checked out two other urologists (2) and 2 radiation oncologists. The Urologists all recommended surgery and the radiation guys explained their treatment but also indicated that surgery would likely work at my younger age.

I then contacted Cyberknife as it was on the list as more of an afterthought than anything else. I did some research and met with the radiation oncologist and was surprised to learn that the success rate for CK was equivalent to RALP. The other specialist were pretty negative about CK. I found the “dark side” of the PC industry and medicine in general, whoever you see is on a team and will as a rule, they will root for their team! It makes sense, you just have to realize, the person in charge of your health care, is you. Everyone else has a vested interest in their approach and how you will fit into their approach.

Swingshift is not spoken yet about the benefits of CK, which is somewhat surprising but I am likewise a fan of CK. My PSA, 17 months post treatment is down to .3 so appears to be working at this point. Why did I choose CK over RALP, the incidence of negative side effects with CK is far lower than with RALP. As you can see in this forum, there are potential for LOTS of complications with RALP. Doesn’t happen to everyone, but sucks if your number does come up as you will see as you read in this forum of the several men who are having to deal with the unintended and “limited” side effects. Understand that with Cyberknife, there are generally no immediate side effects to deal with.

My side effects have been limited to a “kidney-stone-like” episode 4 months post treatment that required steroids to clean up. I say kidney-stone-like cause I never have had kidney stones but whenever I urinated, it hurt, a ton. The steroids cleared that problem within a day and after the 6 day regimen, all has been well. I do not know if that was the result of CK but it happened 4 months post treatment.

If SBRT (there are other brands besides Cyberknife) is available in your area, you should check it out. Regular radiation is not the same, SBRT involves only 4-5 treatments of 45 minutes over a week, not 8 weeks of treatment with conventional radiation and you do not have a post-op recovery period (unless you consider eating real food after treatment recovery!). You have time, your numbers are low enough that you do not have to act immediately and Active Surveillance could also be an option for you. If I had better understanding, I likely would have pursued that course myself but, like you said, never had PC before so figured I needed to “fix it” immediately!

God Bless!

Not as Severe

BLUEpac6:

I had my cancerous prostate removed in 2009, followed by two weeks of incontinence and a lifetime of impotence.  Post surgery complications were due to a piece of plastic dropped into my bladder by Mr. DaVinci.  Significant scar tissue subsequently developed inside my urethra that required two corrective surgeries (2009 and 2011).  So far no scar tissue has returned.

In May of this year I was diagnosed with rectal cancer.  I completed radiation/chemo in mid August.  That radiation has affected my urinary system, but only mildly compared to your situation.  I have painful urination, frequent urination and yellow urine.  Regardless of how hydrated I become, my urine remains yellow.  To me this indicates that the tissue is still recovering from the radiation.

I am scheduled for a resection surgery (the cancerous portion of my rectum is cut out and the two good ends are stapled together) next week.  I have strong apprehension that my pelvic region is filled with scar tissue from the radical prostatectomy, the two corrective surgeries and a previous bilateral inguinal hernia repair (mesh inserted).  My fear is that I will wake up in recovery to the fate of having two bags - one for my intestines and one for my urinary system.

We each have our burdens and our blessings.  I wish you luck.

Jim

 

See the snippet from

See the snippet from urologists Snuffy Myers and Matthew Cooperberg.  "Prostate cancer is never an emergency."

Get a second and third opinion before making any life-altering decisions.  Give yourself months to decide.  This stuff is important.

" It’s very uncommon that prostate cancer needs to be treated within days, weeks, or even months."

MEtoAZ said:

I chose Cyberknife treatment
I don't know your age so that could be a factor in your decision process. I was diagnosed at 52 with 2 cores positive of 12, 3+3 and 3+4 so intermediate risk. My urologist immediately had me scheduled for surgery which I was going down the path to perform. I found this forum and also had a PCP who gave me lots of options, never rendered an opinion, but the range of 4 -5 alternatives was useful and he gave me contacts for each option. In my due diligence, I checked out two other urologists (2) and 2 radiation oncologists. The Urologists all recommended surgery and the radiation guys explained their treatment but also indicated that surgery would likely work at my younger age.

I then contacted Cyberknife as it was on the list as more of an afterthought than anything else. I did some research and met with the radiation oncologist and was surprised to learn that the success rate for CK was equivalent to RALP. The other specialist were pretty negative about CK. I found the “dark side” of the PC industry and medicine in general, whoever you see is on a team and will as a rule, they will root for their team! It makes sense, you just have to realize, the person in charge of your health care, is you. Everyone else has a vested interest in their approach and how you will fit into their approach.

Swingshift is not spoken yet about the benefits of CK, which is somewhat surprising but I am likewise a fan of CK. My PSA, 17 months post treatment is down to .3 so appears to be working at this point. Why did I choose CK over RALP, the incidence of negative side effects with CK is far lower than with RALP. As you can see in this forum, there are potential for LOTS of complications with RALP. Doesn’t happen to everyone, but sucks if your number does come up as you will see as you read in this forum of the several men who are having to deal with the unintended and “limited” side effects. Understand that with Cyberknife, there are generally no immediate side effects to deal with.

My side effects have been limited to a “kidney-stone-like” episode 4 months post treatment that required steroids to clean up. I say kidney-stone-like cause I never have had kidney stones but whenever I urinated, it hurt, a ton. The steroids cleared that problem within a day and after the 6 day regimen, all has been well. I do not know if that was the result of CK but it happened 4 months post treatment.

If SBRT (there are other brands besides Cyberknife) is available in your area, you should check it out. Regular radiation is not the same, SBRT involves only 4-5 treatments of 45 minutes over a week, not 8 weeks of treatment with conventional radiation and you do not have a post-op recovery period (unless you consider eating real food after treatment recovery!). You have time, your numbers are low enough that you do not have to act immediately and Active Surveillance could also be an option for you. If I had better understanding, I likely would have pursued that course myself but, like you said, never had PC before so figured I needed to “fix it” immediately!

God Bless!

Take the lead!

Haven't been around much lately MEtoAZ.   Feel free to take the lead for promoting CK as an alternative to surgery and other treatments.  I'll post my "Choices to Consider" message for the OP below.

As far as Active Treatment...SBRT is the way to go

Swingshift and Me to Az are right on. Surgery can have severe side effects, and these side effects happen more frequently than radiation. Also the results of surgery are age related; the older you are the worse the outcome...one is more likely to have incontinence and erectile dysfuntion.

If I were to have an active treatment, I would choose a form of SBRT. The success rate is similar to surgery, for the most part with very limited side effects, either short or long term.

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