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Cyberknife v. RP

FrankKT
Posts: 2
Joined: Jun 2017

Would value input from those who may have chosen "cyberknife" over radical prostatectomy. I was 2 of 12 cores positive (5% and 15%) and Gleason of 6 (3+3). So...the good docs suggested I think about which treatment plan to follow but to do something in next 90 days. I realize RP removes and could eliminate the worry for good---but what have others experienced with SRBT/CK? Thanks!

Old Salt
Posts: 720
Joined: Aug 2014

I am sorry to be abrupt, but considering the numbers you posted, the decision should be Radiation, RP or AS

Radiation could be IMRT or SBRT (Stereotactic Body Radiation Therapy) or brachytherapy. CyberKnife is just one instrument to perform SBRT (and has greater market share). Varian makes another one that appears to be faster. SBRT requires far fewer sessions than IMRT (Intensity Modulated Radiation Therapy) and the results compare favorably to those obtained with IMRT. Brachytherapy ('seeds') can be done two ways. Conventional (permanent seeds that decay over time) and HD (High Dose); usually two treatments.

RP = prostate removal (robotic or open)

AS= Active Surveillance. Protocols for AS vary at different institutions, but with two (Gleason 6) cores positive you may qualify. 

There are several of us who have 'experienced' CyberKnife radiation therapy (including me), and there are others who have had their prostate removed. In addition, there is at least one person contributing to this Forum who has choosen AS.

Swingshiftworker has a long 'sticky' on the various options for low-grade prostate cancer that he might post once again. For the time being, I just wanted to expand on your original question. An important point, already made by your urologist, is that you have time to study ALL the options. 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

No sticky need in this case because Frank just asked for a comparison between CK and surgery (not a list of options) which I have given below.

However, Frank, in case you want to consider other options, you can find my "sticky" on the topic in this thread:  https://csn.cancer.org/node/307947

FrankKT
Posts: 2
Joined: Jun 2017

Most helpful and thank you. Three of four consults suggested AS as long as I don't mind the repeated intrusions (such as repeat biopsies). And I had meant SBRT (bad typist!). Would love to avoid surgery/removal and all that can go with it if SBRT has favorable outcomes. Thanks again.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Frank,

PCa differs in the range of choices commonly available, something most other cancers lack.

Most of the arguments about treatment choice go back to side-effects.  As regards curing the cancer, surgery, Cyberknife, and conventional Radiation (IMRT/IGRT) are all statistically identical.   Cyberknife is no more or less curative than IGRT, but it is more convenient -- fewer trips to the Radiation Center. 

Your particulars are about identical to what mine were: Gleason 6, and I had one Core at 5%.  Negative DRE.  But after surgery, the pathologist learned that I was actually more involved, and a Stage II.  So no one ever really knows.  The one time that Radiation is to be clinically preferred is when escape from the gland is probable; in those cases, surgery is foolhearty.  Surgery is also a bad choice for older guys, or guys with serious comorbidities.

But otherwise, it is about likely side-effects. Because if there is not metastasis they all have favorable outcomes regarding cure.

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

As I discuss at length below, CK is not just "more convenient" than surgery and, while the "cure" rates of both CK and surgery are about the same, CK by far exceeds surgery in terms of miniizing side effects and maximizing the patient's quality of life following treatment when compared with surgery which can have undeniably awful life altering effects following treatment.  Not so following treatment w/CK.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

As you sometiomes do, my friend SSW, you cocked and fired prior to aiming....

I never said or even implied Radiation was "just more convenient" than surgery.  In fact, my comment then was not referring to surgery in any way:  Clearly, if you will re-read the sentence, I said that Cyberknife was more convenient than IGRT radiation ! (based upon number of trips to the Radiation Center),    Geeze !

While your overpowering bias against surgery is well-lknown and massively documented, reserve it for times when surgery itself is being discussed, if you will.

I have never spoken ill of Cyberknife or any form of radiation, and will continue to attempt at being balanced and clinically sound in my assertions. Quite to the contrary, I have often recommended newcomers to radiation rather than surgery, given their diagnostic particulars.

 

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

AS is always an option for men with low grade prostate cancer (Gleason 6 or 7).  Hopeful is the best source of info on this forum for that approach.

While I was a candidate for AS, I did not choose it for myself because I did not want to be bothered w/the need for regular testing with the knowledge that the cancer was still there and could require treatment some time later.  Better to treat it and be done w/it in my opinion. 

Some men resort to surgery because they think (as you apparently do) that cutting it out will get rid of it "for good" but then learn that that isn't so.  That all of the cancer wasn't removed and that they latter require follow up radiation and/or hormone deprivation treatment as well. 

As I discuss below, I chose CK as my form of treatment and have not regretted that decision.

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

I was diagnosed in March 2009, nine years ago with two cores of Gleason 6, very similar to you. I am in an active surveillance program at a major institution. I have not had any side effects that can occur with active treatments such as radiation or surgery. 

I am confident that I will die with, not because of prostate cancer; however, if my numbers increase where I need to be treated, I will be able to be treated with an active treatment that I might have had when I was diagnosed. At this point with nine years of active surveillance without treatment and side effects, mine has been successful.

I strongly recommend that you ask for a 3T MRI that can indicate if there is extra capsular extension...which is unlikely, find a qualified organization that can manage your case for active surveillance, and go on with your life.

About 30 percent of patients with low risk disease (not likely to progress) as you appear to have, will need treatment; the rest do not. Also be aware that technology is improving, so if you need treatment in the future, the treatment will be more effective.

If you click my name to the left, you can see exactly what my numbers are and what I have done, as well as information about Active Surveillance in general.

Please feel free to ask any questions

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Frank:  I'm one of the few active members here who actually had CK. 

I was diagnosed in Jan 2010 and was treated in Sep 2010.  I am cancer free and have had absolutely NO side effects after treatment.  My PSA readings were erratic after treatment causing concern but they proved to be due to irritation of the prostate following treatment and, after a MRI/MRSI 3T scan about 2 years later,  it was determined that I was cancer free and my PSA level has dropped consistenlty ever since down to 0.137 level in Aug 2016.   After 5 years, I was deemed "cured" and am back on an annual testing schedule.  Next test is due in Aug/Sep 2017.

When I was diagnosed, CK had been around for about 5 years and was still considered an "experimental" treatment and was not covered by most medical insurers at that time.  Fortunately for me, Blue Shield changed it's assessment of the treatment just before my diagnosis and, I was able to switch from Kaiser to BS to recieve medical coverage for the treatment.  The delay between my diagnosis and treatment was due to the need to switch between Kaiser and Blue Shield.

My research at the time (and to this day) convinced me that CK was a far better approach to take for the treatment of my low level (Gleason 6) prostate cancer.  The main reason was the high level of precision used in the delivery of the radiation (far suprioer to any other treatment then and since) which provides for delivery of radiation to the sub-mm level in all directions (360 degrees) using a rotating arm and movable treatment table. 

The scanning equipment used also allows the operator to "see" any movement of the body or internal organs during treatment and to suspend treatment if such movement would cause delivery to occur outside the prescribed parameters.  My treatment was actually stopped temporarily on one occasion because the operator saw gas passing through my intestine which would disrupt the treatment.  No other method of radiation delivery can do this.

Treatment with CK is also the most convenient because it only requires 3-4 treatments over a week.  IMRT, the most common method of radiation treatment for prostate cancer, use to require at least 40 treatments (5 a week for 8 weeks) but I believe the number of treatments as dropped to around 25 because they are now using a higher radiation dosage level then b4.

My research at the time (and to this day) convinced me that there was NO WAY that I was going to subject myself to surgery of any kind.  The risks were simply too great.  Yes, many men "survive" prostate cancer surgery without any lasting negative effects BUT there are many men who have suffered greatly following prostate cancer surgery.  

Almost without exception, men suffer some form of incontienence and ED following prostate surgery and some men experience these "side effects" PERMANENTLY. 

Just troll this forum (and other prostate cancer forums) for threads about the need to use an AUS and/or penile implant following surgery.  Also, even if they survive surgery w/o permanent injury, men still have to wait at least 6 months to a year before there regain urinary control and sexual function following surgery.

These side effects of are REAL and there was no way that I was going to risk experiencing any of them.

There is also a little talked about "side effect" of surgery which results in the shortening of the "appearance" of the penis following the surgery which results in about a 1" retraction of the penis into the body cavity.  The reason for this is obvious.  The prostate gland is situated between the bladder and the top of the unexposed penis inside the abdomen.  The prostate is always described as about the size of a walnut -- call it about 1" in diameter.  When you remove the prostate, the top of the internal body of the penis is attached to the bottom of the bladder which retracts about 1" of the external body of the penis into the body.  Hence, the extenal penis will "look" shorter by that amount.

Men are told to use pumps and other devices to try to regain their erections and to "lengthen" the penis but pumping has not been proven to be effective for either.  Since I am not greatly endowed to begin with, that was just another reason NOT to choose surgery for me.

BTW, the reason men almost always experience incontience after surgery is because one or both of the urinary sphincters attached to the penis and/or the bladder is damaged in the process.  There is actually a sphincter at the top of the interal end of the penis which is normally attached to the bottom of the prostate.  This sphincter is normally sacrificed during the surgery and the only sphincter left to do the job is the sphincter at the bottom of the bladder.  That sphincter needs to heal and "learn" to take control of urination entirely and, if it is permanently damaged in some way, the later implantation of an AUS is the only recourse.

Most men who choose CK for treatment experience NO side effects whatsoever -- no ED and no incontinence.  The reason for this is that because of the precision of radiation delivery there is no or very little collateral tissue damange to the surrounding tissue (including but not limited to the urertha, bladder, rectum and seminal vesicles) which can cause such side effects.  Some men experience rectal and/or urinary irritation following the treatment but these effects are not normally long lasting.  

There are now 10+ year studies of the effectiveness of CK vs surgery all of these studies point out that while the "cure" rates of CK and surgery are essentially the same, CK is far superior than surgery in terms of minimizing side effects and maximizing the patient's quality of life follwing treatment.

So, the choice was a no brainer for me.  CK all the way and I have never regretted that choice.

 PS: Your are DEAD WRONG if you think that removing the prostate eliminates the "worry for good."  It doesn't. 

I cannot count the number of men who have reported that they suffered from a FAILED surgery and had to have followup radiation treatment to kill cancer that was not removed during the surgery.  Not only that but most men who require following radiation are also put on hormone deprivation therapy (HDT) as well. 

I have almost NEVER heard of any men treated with radiation at the outset who had to later be treated w/radiation and/or HDT later.  Doesn't mean it hasn't occured but the reports of such occurances by men is extremely rare when compared with such reports by men who have suffered a FAILED SURGERY. 

So, don't think that if you have surgery that that will be the end of it.  I could be the end of it but experience has show that it very well may not.

 

Clevelandguy
Posts: 470
Joined: Jun 2015

Hi,

I see swingshift is still spewing the one sided incorrect facts about how bad surgery is which is not true.  Not everyone who has surgery HAS to use an AUS or not everyone who has surgery is incontinent for 6 months, look at the facts from people on this forum. I don't like it when people state in-correct information to try and steer you away from a certain treatment.  Do your own homework and look at other users on this form.  If you want to do CK that's fine, just make a educated choice.  Sure cure rates between RP & radiation are about the same, it's up to the individual to determine their own path.  Some people like to spout about how one treatment is better than the other for side effects but if you look at the personal accounts on this website you will find all forums of cancer treatment genrally have side effects wether it's drugs, radiation or surgery.  The choice is yours after you study all the info and make your choice that fits your ideal of "the cure".    Studing all the treatment plans is a good education that will tell you in the end, I did study this and this is the path I want to take with my life.  Good luck.....................

Dave 3+4

GeorgeG
Posts: 127
Joined: May 2017

If I were a candidate for AS, I would want a 3 Tesla Endo Rectal Coil MRI with contrast and then a fusion biopsy. This improves the information about the extent of the disease as well as improving the likely hood of sampling all of the key areas during the biopsy . This way you improve your odds of a comete and accurate diagnosis to confirm that AS is appropriate. I would also want to be at a bigger facility with a good reputation. 

I am going to agree that radiation and RP have similar outcomes. If anything, some studies show surgery producing slightly better outcomes.  That said, be careful with averages because you are not the average. There is no exactly average guy. A guy with a bad ticker does not have superior odds picking surgery. Your choice should be guided by getting high quality advice from rigorous professionals, merging that with your goals and needs. Remember that the skill of the provider is very important. Pick experience with a good track record. I talked to 4 surgeons and went with the guy who has done 4,000 of them and has excellent results. I am 62 and was 99% continent in about 3 weeks and 100% at night starting the day that the catheter came out.

Grinder
Posts: 442
Joined: Mar 2017

Just to add my 2 cents. By now everybody is tired of hearing me brag about my massive 250cc prostate. But I have to reiterate, RP is not for anyone with active or metastasized PC. But if there is a history of severe BPH, chronic or recurring prostatitis, along with inactive PC, RP is the way to go. I have recovered about 95% continence, and am not far behind on the ED. It is true you lose up to 2" , and it's not just appearance, you really do lose it. I often kid around that I am no longer circumcised, but its true. If you are not well endowed to begin with, RP will not be your friend in the locker room, or with the ladies in the bedroom. So you should consider that as a permanent side effect. But I have to say this, when I was struggling just to keep the pipes open, taking Flomax and Cialis daily, heading to the emergency room when my urinary tract was shut down completely, wearing Foley catheters often till they get infected and bleeding, trying to self catheter the worst, just to get the pressure off, DaVinci RP was a great blessing. I knew afterwards that even if I had to wear a diaper the rest of my life, it was better than what I went through before RP. Better to change my own Depends than self catheterize. So keep in mind that RP has the advantage of losing a potentially infected, enlarged prostate, and determine if you have enough "wiggle room" to lose up to 2" . Family history of severe BPH or chronic prostatitis should also be a consideration. If there is no family history, and no personal history and no extra inch to spare, it may not be necessary. But for me it was... And btw don't be afraid to find the best. I had been through five different urologists until I found the most competent urologist and the most competent surgeon available. I don't mind hurting someone's feelings if my life is on the line. It helped having a GP who goes to the same church as I do. She wasn't afraid to keep scheduling referrals until we found the best available.

MK1965
Posts: 179
Joined: Jun 2016

Frank,

From my own experience with RARP I can say: ANYTHING IS BETTER THEN SURGERY especially if you are young guy. At 7+ months post op, nothing works for my ED except TRIMIX and who likes to stick your own penis with the needle? Adding to ED loss of lenght of 2+ inches, I am screwed up for the rest of my life. 

Morning of November 2nd when I went to OR for my RP, I am realizing now, I said GOODBYE to my sex life.

I wish I stayed on AS even against medical advice. Now, it is to late, but never is to late to decide on more aggressive treatment when it becomes necessary.

I WOULD NOT RECOMMEND RP SURGERY EVEN TO MY WORST ENEMY.

MK

Swingshiftworker
Posts: 1013
Joined: Mar 2010

MK:  You have my sincere regrets.

While some here seem intent on falsely advising newbies that surgery is no less risky in terms of quality of life concerns than radiation, your story (and those of many other men) is proof to the contrary.

My "mission" on this forum has been to warn newbies of the very serious risks of surgery and to make them aware of other options, particularly CK, not only because I received the treatment but also because (at least early on) very few people knew enough to make others aware of it.

I continue to speak out against surgery -- 6 (going on 7) years following my treatment --  because I find that there are still men who think or are advised that surgery is the better and/or necessary choice and are NOT made fully aware of the potentially life altering negative side effects of the treatment by their doctors and also because there are still people here who seem intent on downplaying those risks despite the repeatedly reported "truth" to the contrary.

So, I'll continue to post my sticky on the available "options" for treatment and my personal opinions about them and will give my candid opinion about the benefits of any other method of treatment over surgery, despite push back that I am currently getting here for doing so.

I just sorry that my message did not reach you before you made the choice you did.  It has reached others who have thanked me for the information that I provided and made other choices (not just CK) and so avoided the problems that you did.  

This success in warning men off of surgery is what motivates me to remain on this forum and I will continue to do so until I'm no longer the only person willing to do so w/o equivocation.

 

Grinder
Posts: 442
Joined: Mar 2017

As much as I might disagree with MK on the pros and cons of RP, he makes a very important point. As long as you are on AS, you have options. Once you have an RP, you are committed and you no longer have the option. There is no going back. You can't get a prostate transplant.

GeorgeG
Posts: 127
Joined: May 2017

Any intervention into the body carries risk. You can even die of liver failure from acetaminophen never mind RP etc. Infection risks, toxic reactions, etc. That said, there is a place for serious treatment choices when the result of no action is far worse than the risk of side effects, or at leasy that should be one of the criteria. 

One thing to keep in mind is that RP has immediate side effects in the area of erection function that has the possibility of improving if nerve sparing was done and the work is done by a skilled surgeon. It can take up to 4 years to gain the maximum possible erectile function and baseline function helps determine your probable outcome. Radiation on the other hand also carries erectile dysfunction risk but it is delayed. It can take months or years before the full extent of the results have occured. Why wouls anyone want to do something to their body that can cause them to lose erectile function? To survive. This among others are the reasons not to go into this lightly, but there is a point where the disease is dangerous enough where alive with a vacuum pump is better than the alternative at least for many of us. If a given patient doesn't see it that way, then by all means do not pursue treatment, that's a choice we can't make for you. We don't know your priorities. Some may chose to live or die by the sword, so to speak. Believe me, I had those thoughts. Waiting can be a very good choice  -  I am conservative myself and don't pull the trigger easily on major medical proceedures. We are in watchful wait mode for my wife's recurrent thyroid cancer. However, in the case of prostate cancer it is a two headed beast. If low risk is confirmed - low gleason score, small slow growing tumor confined to the prostate ... then no action may be the perfect choice but if you have a disease that is progressing, it may eventually transition your status from 90+% cure potential to something approaching incurable if you wait too long. Make sure that you are being honest with yourself about your priorities. Some just want it out of there or want radiation now because the thought of a living cancer is intolerable and they don't put much emphasis on erections or even leakage. Others might suffer as much if they get the symptoms and wish that they had just taken their chances. I suspect though that many would have a different view of erectile function if they were then faced with the prospect of losing the battle.

Tough choices for sure but there is a right answer for you. Just be honest with yourself and let that help guide you on which way to lean. Do your reading, the side effect rates are well documented. Then ask your doctor about their experience and numbers to see if they are better or worse than those averages (look elsewhere if they are evasive or show no interest). A skilled surgeon doing double nerve sparing (not possible for many after disease progression) RP on a young man with good baseline function has a very good chance of full recovery of continence and erections, but not 100% and the numbers are worse for advanced cases. 

leamon
Posts: 39
Joined: Jan 2012

 

One thing we don't know about you is your age. The older you are, the more advisable AS becomes. I was 79 when diagnosed and did nothing but regular PSA and digital exam for 5 years. By then the PSA was 14 and the Gleason was 8 or 9 so we decided to treat. SBRT was not available for a Gleason that high so I went with IGRT. The machine was the same as used for SBRT. Cyberknife is a brand name. It may or may not be close to you where as a machine for SBRT may be. Be cautious of whom you choose. My Urologist and his associate oncologist suggested 45 sessions of IGRT and 2 to 3 years of Hormone Treatment. Two oncologist that I saw for 2nd opinions did not want the HT unless necessary because of possible effect on the heart, something the 1st oncologist had not mentioned nor had he checked with my cardioligist (I had bypass surgery 5 years before and my cardiologist was not in favor of HT unless needed). I chose 39 sessions of IGRT. I have posted the latest follow up on my treatment in my posting chain. The gist of this is, choose well and don't be in a hurry. It's your choice so don't let us influence you too much. Take what is posted as suggestions to explore.

One other thing; the oncologist I chose showed me the Sloan Kettering chart that shows your chances of dying from the cancer.  At my age, about 94 out of 100 would die from something else even if I did nothing.

 

leamon

 

GeorgeG
Posts: 127
Joined: May 2017

leamon brings up a good point. He is refering to the Memorial Sloan Kettering nomograms (charts) that predict your outcome. They can also tell you how it changes as (if) your numbers get worse which helps you decide what to do. Even high end institutions like Hopkins use these so if your doctor cannot offer this information to you, you might want to consider how rigorous they are. You can find these online as well.

jc7908
Posts: 5
Joined: Mar 2017

Swingshiftworker,

I read on another post that you had your CK procedure at UCSF.  Would you mind sharing the name of your doctor?  I am in the Bay Area and I was recently diagnosed with low risk PCa, as explained in another post.   I am conisdering SBRT and would like to speak with a local specialist.  Thanks.

Old Salt
Posts: 720
Joined: Aug 2014

You should really start a new thread, but in the meantime, Dr Chris King is one of the best for SBRT and other modes of radiation. But he is at UCLA and to my knowledge, uses the Varian instrument (not CyberKnife).

UCSF and Stanford should have great docs as well. I hope that Swingshiftworker will follow up.  And, as an aside, SBRT was 'invented' at Stanford.

ASAdvocate
Posts: 117
Joined: Apr 2017

Why is treatment being discussed for a man with two cores of low percentage Gleason 3+3?

The NCCN guidelines state that active surveillance is the default course for such a case. I recently attended a support group and heard a urologist who does a lot of prostatectomies say that he doesn't want to do any more on men with small amounts of G6. It is simply overtreatment.

Instead of debating Cyberknife versus surgery (I would take Cyberknife without hesitation if it came to that), his direction should be advised towards the least damaging but still safe action, which would be a formal AS progran with all its mandatory follow-up testing.

 

 

 

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Well said!

Time and time again, men choose a treatment when active surveillance is appropriate. This is true of newly diagnosed who ask questions at this forum, and of men who regularly post here, who over treated when they were diagnosed, and incorrectly recomend to others the treatment of their choice when AS, as you have stated, is the default course.

Grinder
Posts: 442
Joined: Mar 2017

AS, in my opinion, is the wisest course whenever available. That leaves your options open to adapt to your changing profile. As your condition evolves, you can choose the procedure commensurate with your evolving condition.

I keep stressing that I am not an evangelist for RP. I am an evangelist for the procedure that best matches your profile. Earlier, MK noted that he had a TURP procedure six months prior to his RP. Was RP the best procedure for his profile six months after a TURP? Read his account for the answer to that.

We tend to forget other factors may evolve involving your prostate. You may have to switch gears with these changing conditions. AS will allow you to adapt to the changes.

CC52
Posts: 103
Joined: Nov 2013

It's been a while since I've posted, and it's not surprising that the "debate" continues. As my Dad would say - ain't that why they make chocolate and vanilla? And strawberry, etc, etc?

With those numbers, it seems like the OP would be a posterchild for AS. Any other option would be off the table. But that's just me. 

 

MEtoAZ
Posts: 37
Joined: Feb 2016

As a CK patient myself (15 months post treatment, PSA under .6), I would also recommend AS be considered IF it is determined that the cancer is contained in the prostate and not along the periphery as it was in my case.  Because of the location of the cancer I did not want to risk it spreading outside the prostate and also knew that IF the cancer was outside the prostate, I would still have to deal with radiation post RP which was one of the primary reasons I did not seriously consider RP.  I am happy with my decision and I hope that you are able to find doctors who can fairly represent the options to you in a manner that allows you to make a decision you are most comfortable with.  I recommend Cyberknife is asked.  I appreciate my PCP who gave me a list of options to consider including CK AND SSW who's tireless pitch for CK encouraged me to check it out.  Indeed, the Uroligists and regular radiation oncologists tried to steer me away from CK and somewhat bashed that option even though it is in fact on line with RP in terms of cure when it is an appropriate option.  It is not always appropriate as those with larger prostates or cancer that is wide spread can attest.

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