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Which treatment????

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

 

I am about a week into the time to treat decision phase (even that is unsure).  I had 4 cores 3+3 and one was upgraded to 3+4, decipher test showed intermediate risk. My doc who I trust suggests it is time to treat.  

 

On these forums, I get many different opinions, which is why I am on them. I totally seek diversity of thought and experience to help sort out my next steps.  This morning I read few RALP stories and the picture got grim.  

 

The key question and I am sure this has been asked many times, is 

 

How do you sort out the best treatment, not the best docs? 

 

For now, I am assuming treatment is the right answer.  I do plan to visit with a Radiation Oncologist. 

 

Thanks in advance for your input.  Denis

airborne72's picture
airborne72
Posts: 270
Joined: Sep 2012

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

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, Jim, I am on track with your thoughts. Denis

Clevelandguy
Posts: 393
Joined: Jun 2015

Hi,

Like I have said in the past it's up to you and your support group to choose the best treatment plan.  Study all the various treatment modes and the side effects and make a choice.  I am kind of put back that you are more concerned about the various treatments and not so much the best doctor.  A great treament in the hands of a rookie doctor can have just as bad outcome as a bad treatment in the hands of an experienced doctor.  I feel both go hand in hand to get you the best outcome possible.  Study, study, study and once you know what's available you should be able to make a treament choice.  I did surgery(Davinci robot) almost 3 yrs. ago with no complications.  Other people might choose some form of radiation treaments or hormone treaments.

 

Dave 3+4

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, Dave I think I am following your path. Denis

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

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

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Max thanks your experience helps me!  Denis

Will Doran
Posts: 207
Joined: Sep 2015

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

SubDenis's picture
SubDenis
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Joined: Jul 2017

Will thanks good  Denis

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I too am T3b with 18 months Lupron and 39 radiation treatments post-op, and I had zero complications with the DaVinci prostatectomy. However, the surgeon did use a broad cut to ensure that there was no cancer left at the surgical margins or lymph nodes. Consequently my continence did not heal quickly enough in order to begin adjuvant radiation and early on I had to make the decision to have an AUS implanted (due to the lag time required for healing before starting RT).  Overall I have no regrets about choosing surgery.  I know that a doctor whom I trust was actually in there and treated what he saw before him.  I did consult with a radiologist beforehand and got the impression that he would be shooting in the dark. Also as we had a lot going on at the time it was better to get the surgery over with rather than commit to a lengthy schedule of radiation treatments.

SubDenis's picture
SubDenis
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Joined: Jul 2017

Roblee thanks for sharing,  Pretty sure I will meet Mr. Davinci.  denis

MEtoAZ
Posts: 37
Joined: Feb 2016

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!

Swingshiftworker
Posts: 1013
Joined: Mar 2010

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.

BLUEpac6
Posts: 43
Joined: Jun 2012

I will try to make this short.2009 psa 110 had prostrate removed and everything fine till 2011 and psa went up to .06 and recomended to have radiation which I did.Every thing fine till 2016 uncologist released me no cancer but I started having some blood come out my penis and finally blood backing into bladder and having to get a catheter put in.Since 2009 I had never har any trouble leaking and now 8 pads a day.The Uroligist was going to fry and install a mechanical unit to urinate but scar tissue in uretha where prostrate was needed to be removed.That did not work so a tube was put in stomache to bladder hoping to let everything heal.Now has anybody heart of this i turns out radiation had damaged my uretha and bladder topoint nothing could be removed and tied back.So only thing to do on July 10 2017 had major surgery to remove bladder and upper uretha.A pieace of small intestine removed and kidney tubes tied to it run out stomache to stoma and have to wear ostomy bat to catch urine.Pathology showed no cancer in anything and psa undedecable.The radiation burnt everything up andtook 7 years to show up.This surgery took 90days to get over and doing fine.Has anybody heard of this happening before.

airborne72's picture
airborne72
Posts: 270
Joined: Sep 2012

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

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I'm sorry to read about Airborne and Bluepac's complications following treatment.  Surgery has immediate risks and radiation has long term risks.  I suspect that the reason that the newer forms of radiation such as CK have such ardent supporters is that these treatments are so new that there are not many men out there who had these particular treatments ten years ago so they have not yet developed possible long term iatrogenic side effects. It's like buying a new car with "revolutionary" technology... anyone remember the Vega and it's aluminum engine, or the Wankel engine? 

Radiation does damage healthy tissue. That's how it works.  Healthy tissue can regenerate but cancer cells cannot.  Several doctors made the point that I should have certain procedures done BEFORE radiation rather than after.  And I know of several cases in which men experienced surgical failures after having had radation in some cases years earlier. Again, that's just the way it is.

SPT
Posts: 40
Joined: Aug 2017

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."

SubDenis's picture
SubDenis
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Joined: Jul 2017

I was at a presentation with Dr. Meyers in LA a few weeks ago. He is at the end of his career, a brilliant man. Denis

Swingshiftworker
Posts: 1013
Joined: Mar 2010

 

The following is a duplicate of one that I posted here: http://csn.cancer.org/node/305388

. . . People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of what you need to consider:

1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

Good luck!

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

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.

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

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, everyone, still confused.  Most folks advocate for what they did, no surprise.  Finding a way to distinguish the best choice for me is not evident yet.  Got to keep learning. Denis

CC52
Posts: 101
Joined: Nov 2013

As you said - no surprise here - add me to the SBRT column. Minimal risk with outstanding results. 

Best - CC

ASAdvocate
Posts: 108
Joined: Apr 2017

Denis, I'm not advocating for a treatment that I've done, because I haven't done any, as you know.

But, I have had the experience of "shopping" for treatments in case that ever becomes necessary. Eight years of researching, asking, and synthesizing the experiences of others.

After all that analysis, there is no doubt in my mind.  I would choose SBRT if treatment was necessary.  

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, ASA,  I am still on the see-saw, one day I am convinced and the nest I am not.  Here is an article by the Rad oncologist I will be seeing in a couple of weeks.  http://www.cancernetwork.com/prostate-cancer/sbrt-prostate-cancer-may-result-more-complications

Denis

ASAdvocate
Posts: 108
Joined: Apr 2017

Denis, I read the scholarly article in full.  It did find more GU toxicities for SBRT at 6 months and at 12 months.  However, there was no difference after that.

So, the question remains open, as no treatment is 100 perfect. But, my bet is still on SBRT.

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

No GU SE's for me, but the GI SE's - diarrhea, gas, frequent urgency and loose bowels - have been near debilitating. This is from the traditional 39 Tx hyperfractionated IMRT using RapidArc, a fairly modern piece of equipment which from what I've read can also be used to administer SBRT.  I can't imagine having those 7000 rads delivered over a mere five treatments. I suspect my gut would have been burned up. 

Thank goodness tomorrow is my final treatment.

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Roblee hope you find relief soon Denis

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

As you probably realize, you are receiving all kinds of opinions from those who post at this board, and all the other boards that you frequent. Some of these poster seem more convincing to you than others. All of these, including mine are non medical profession opinions. None of us are doctors. You need to do your OWN HARD RESEARCH based on what YOUR, and your WIFE's priorities are from treatment. You will have to live with the results, not hopeful or anyone else at these boards.

CC52
Posts: 101
Joined: Nov 2013

In 100% agreement with hopeful on this.  

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, hopeful and that is what I think I am doing.  I take in all thoughts and opinions, which informs our decision.  Clearly, there are guys these forums who are well informed and some who are biased. I suspect that is true of docs also. I fired my first doc.  My intent is to look under as many rocks as possible so that I can enter the decision feeling I have done all I can do.  Denis

Clevelandguy
Posts: 393
Joined: Jun 2015

Hi,

Sounds like your on the right track SubDenis, once you have all the info you will make the right decision on YOUR best course of treatment.  There is no one treatment that will get rid of the cancer and leave you with no side effects. All treaments have some kind of negative results, hopefully through knowledge & common sense you will pick the best choice.

Dave 3+4

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks Dave the journey continues

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