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Cyberknife update

mrdezzy
Posts: 23
Joined: Mar 2012

I am early stage, 3+3 2 positive cores out of 16 so do have some time to thoughly explore all the treatment options. I continue to be very impressed with the treatment plan for the Cyberknife compared to other radiation treatments and continue to be apprehensive about the Robotic surgery for the potential side effects. In exploring the topics there does not appear to be many knew comments about the CK. If there are any members who have direct experience with this therapy I would be very much appreciative of your insight. It does seem to be focused, very quick and few side effects. From what I can tell there appears to be only one major disadvantage and that being there is not yet data on long term stats beyond 5 years..thanks

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mrdezzy,

I was diagnosed in March 2010 with a Gleason 3+3, 1 of 12 positive cores at 15% involvement. Pre biopsy PSA was 4.2 and there were no physical symptoms or a family history of prostate cancer.

After my diagnosis I consulted with DaVinci surgeons, open surgery urologists, an oncologist with a prostate cancer specialty, Loma Linda Medical Center (proton therapy), an SBRT specialist that used the Varian equipment and the CyberKnife radiologist I eventually chose. I also did a telephone consult with a urologist who wrote one of the books I read (The Big Scare—The Business of Prostate Cancer by Dr. Anthony Horan who urged active surveillance). I read about a dozen books on prostate cancer then (a lot more since) and reviewed bushels of studies and Internet information, prostate cancer forums, and online resource sites.

Everyone I met with assured me that I stood an excellent chance of recovery regardless of the method of treatment. Eventually I based my treatment decision on efficacy of treatment and quality of life issues. Like you I was extremely nervous about the potential risks associated with surgery, particularly as my research led me to the realization that almost all of the treatments for low risk prostate cancer have nearly identical positive outcomes.

CyberKnife is a newer technology but it’s been around for a long time and has been used to treat prostate cancer since 2004. Given the pace of advancements today I would not be surprised when it is surpassed by some newer technology that may show even more promise. I took the time to research the physics behind CyberKnife, understand its real time tracking system, accuracy, how they build radiation plans, and the advantages of using high dosage for prostate cancer given its characteristics which made it superior, in my opinion, to other forms of radiation treatment. I even had them show me how they did daily maintenance in the equipment and how they would handle emergencies such as a power outage (back up generators), earthquakes that are common in Southern California (motion sensing shutdown devices) and so forth. A Dr. Alan Katz out of New York has written some excellent papers on these subjects and I recommend you take the time to read them: http://prostatecancerinfolink.net/2008/05/29/guidelines-on-psa-doubling-time/. I don’t think there is any substitute for learning and understanding these topics personally instead of taking the word of someone else.

My pre-treatment events that included fiducial insertion, various CT and body scans to build a 3-D image of my prostate, and other events were without incident or bother. I did have my fiducials implanted via the perineum that minimizes potential infection risk. Others I know of have contracted sepsis when fiducials were implanted by the more common trans-rectal method. After reading some studies out of Stanford I also asked that my five treatments be given every other day instead of daily and that was not an issue.

My radiation treatments each lasted about 45 minutes. I never experienced any discomfort, tiredness, or other issues. I went to work each day following my sessions. After my last session I did sense a bit of urinary urgency but took some Advil and the issue went away overnight. I was given a Flomax prescription but never used it.

I did experience a small PSA “bounce” at about the 12-month point that is not uncommon. This is a situation where after declining PSA rises a bit, and then heads downward again. My PSAs have dropped from 4.2 to 0.9 and are continuing to decline and my radiologist indicates they should continue to decline for another year or so. I have had zero issues with sexual function although radiation to the prostate will reduce (but not eliminate) the amount of ejaculate at orgasm. I have experienced no urinary issues, rectal inflammation, or other side effects that a small majority of men undergoing radiation sometimes experience. With CyberKnife when these conditions do occur they almost always pass within a few weeks of treatment although there was recently a post on this forum by a man who experienced discomfort and other issues about six months following CyberKnife treatment. It was unclear to me from the description (it was actually his wife who was describing the symptoms) whether or not it was a direct result of CK or some other pre-existing condition but it seemed likely that CK treatment may have played a role. The Katz papers referenced above detail the side effect rate men of CK versus other treatments and in just about every case are superior.

It is important to keep in mind that any treatment to prostate cancer carries a risk and the glowing reports of one patient may not apply to you. Each of us has a different cancer, different body, different gene pool, and different sensitivities to various protocols.

I certainly have no regrets about choosing CyberKnife. I know more now than I knew then and am dismayed about many aspects of my initial diagnosis and recommendations by everyone from the family doctor to my urologist. Having said that, you can’t rewind history, and I would probably have ended up making the same decision regardless of how I got to the decision making point.

I do have one question for you: Was your Gleason score really a 3+2 as you wrote in your post? If it is a 5 and not a 6 I think you should seriously consider active surveillance.

Best to you.

K

mrdezzy
Posts: 23
Joined: Mar 2012

thank you for your response. I have been doing extensive research but not as complete as yours so your input is extremely beneficial. My scores were 3+3 total gleason 6 with 16 biospy samples, 2 of which were positive, My PSA had been rising over the last 5-6 years to a high of 7.3 when my internist turned me over to a Urologist. I really struggle with what appears to be a very low "acceptance" rate of the CK over surgery or the more traditional radiation therapies particularly other members of this Forum when you consider the factors you mentioned such as 5 days verus 8 weeks, etc. I would think the CK centers would be turning potential patients away but I have not seen many like yourself on this forum. I hear a lot about the HIFU and as the next great treatment but not about CK. I have also heard that insurance coverage is somewhat problematic but again I wonder why insurance companies would not be more receptive to a therapy of 5 treatments versus ones of 40 treatments. I am happy to hear from an obviously intelligent gentleman like yourself express your satisfaction. While I have not yet totally decided I am strongly leaning to CK. I have seen some posts from Dr. Katz and plan to visit his website as well. Did you do any research on the "quality" of the Ongologist in developing the protocol or do these guys have it done to a "basic science" with few judgmental varibles? thanks again

Swingshiftworker
Posts: 609
Joined: Mar 2010

I've posted extensively here about my choice and experience with CK. You can simply do a search for "CK" or "CyberKnife" to find the messages posted by me and others on the topic.

Kongo has pretty much covered the topic here and there's no need for me to elaborate further at this time. Suffice it to say, I think that CK is the best treatment currently available for early stage PCa because it provides the most precise delivery of radiation with the least possible side effects.

It is equal to surgery in terms of results but far surpasses it in reducing the risk of ED and incontinence, as well eliminating the other risks associated unique to surgery. It is also IMHO better than Brachytherapy (LDR and HDR), Proton Beam Therapy and other radiation methods. I've explained my opinion about this previously (which you should be able to find in a search) but can elaborate again later if you request it. Insurance coverage can be a problem because it is still considered "experimental" by some insurers. However, if you live in CA, Blue Shield will cover it.

I was diagnosed w/Stage T1c, Gleason 6 (3,3) and PSA less than 5 went I had my biopsy in Jan 2010. Treatment was received in Sept 2010. My last PSA test result in March 2012 was 1.55; still not below 1 (which is an indicator of success) but headed that way after some very erratic and somewhat frightening readings. No side effects after treatment whatsoever.

I highly recommend that you go w/CK if you are eligible for it and can pay for it w/insurance and/or out of pocket. If not, HDR BT would be my 2nd choice.

Good luck!

mrdezzy
Posts: 23
Joined: Mar 2012

thanks for the input, I am still learning the "lingo" what is HDR BT? Is it high density radiation with Brachytherapy? If so, is there much differience in these processes based on the faciltiy and/or Doc. I live in Atlanta and they have the several centers doing radiation and very difficult to determine what the differiences are..thanks again..glad it went well for you!

Swingshiftworker
Posts: 609
Joined: Mar 2010

There are 2 forms of brachytherapy: Low Dose Rate (LDR) and High Dose Rate(HDR).

The low dose rate is in the form of seeds placed permanently in your prostate. The high dose rate is in the forms of "strings" of seeds that are placed in your prostate the same way the loose seeds are but that are then removed. Both methods require insertion of the seeds or strings through the perineum and both require a radiologist to plan the pattern for insertion in terms of "seed" placement and radiation dosage.

What I don't like about LDR BT is that:1) the seeds are placed permanently in your body, 2) you are radioactive for at least a year (the 1/2 life of the seeds) which means you shouldn't be in close proximity to pregnant women or children during that time, 3) the radioactivity can trigger bomb sensors and the seeds can trigger metal detectors, 4) the seeds can move and cause unintended damage to the urethra, bladder, rectum and other tissue and 5) even if the seeds don't move, the placement of the seeds could be faulty due to human error.

HDR BT has the same risks of planning and placement error that LDR BT does but there is no risk of "movement" of the radiation seeds (since they are all removed after the treatment is completed (usually w/in 24 hours). The dosage is around 12 Grays in one treatment vs about 9.5 Grays per treatment over 4-5 treatments (or a total of around 38 Grays) for CK. BTW, CK is actually designed to emulate treatment with HDR BT.

Here's some info regarding treatment planning for CK and it's comparison w/HDR BT offered by Accuray the manufacturer of CK:

http://www.cyberknife.com/uploadedFiles/For_Your_Doctor/500345%20B%20HDR%20Whitepaper.pdf

Here's also a video of a seminar given by a Dr. Fuller who administers CK in San Diego:

http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

Dr. Fuller is a long time supporter and user of CK and is very active in providing information on CK's Patient Forum which you can find here:

http://www.cyberknife.com/Forum.aspx?g=topics&f=2586

Lastly, here's a study written by a Dr. Katz in 2010 that summarizes the results of prior studies on the effectiveness of CK over the prior 5-7 year period:

http://www.cyberknifeofli.com/images/stories/content/PDF/ckprostatetcrtak.pdf

This is the best paper on the effectiveness of CK that is currently available. I think there may be another paper that was published recently but I can't find the link for it. Perhaps Kongo knows where it is.

Hope you find this info helpful.

There are always qualitative differences in the treatment provided depending on the experience of the provider. Doesn't matter if it's surgery (open or robotic), LDR or HDR BT, PBT or CK that we're talking about. Whatever treatment you choose, you need to pick the specialists that have the greatest amount of experience doing what it is you want done and in whom you have the greatest faith that they can carry out the work on you competently.

It's hard to judge the quality of any physician except by the number of procedures that s/he's successfully performed. So, it's best to ask for a personal and/or institutional history using the specific procedure, if available, as well as referrals to past patients.

I for one just relied mainly on the reputation of the institution that was offering the treatment -- the University of San Francisco Medical Center -- and assumed that the association of my RO -- Dr. Alexander Gottschalk, who is also the Director of CK and a teacher there -- w/the medical center was sufficient evidence of adequate ability. However, I also requested info on past treatment "success" (which was limited because of the short time that CK has been in use) and the names of past patients who I spoke with via email and were all happy with the results.

Good luck!!!

smithgem
Posts: 2
Joined: May 2012

Hi: Found this board doing my research for a my brand new Dx of PC. Very good info and advice, thanks for any help and advice anyone can give. My Dx is 3 + 3 = 6. Two areas out of 12 involved one is 1 to 2mm the other less than 1mm and T1c. I am 57 years old and have already survived two cancers (non Hodgkin’s lymphoma and basel cell carcinoma) What are the odds I would get a third cancer, guess I should start playing the Lottery!

Saw your post that Kaiser No. California does not have CyberKnife and will not pay for it, do you know if that still true?

hopeful and opt...
Posts: 1268
Joined: Apr 2009

I believe that cyberknife is an excellent active treatment, however in my opinion active surveilance with delayed treatment is a better choice for a man who has been diagnosed with low risk prostate cancer; that is gleason 3+3=6,less than 3 cores positive, less than 50 percent involvement in any one core, and with a PSA less than 10, and a PSA/size of prostate less than 0.15.

Although many men when diagnosed are simply scared since they now have the big "C", want to take action and get the cancer out of their body, even though there is a risk of suffering side effects, AS, today is considered the wiser alternative by many since 70-75 percent of the cancers in these patients will never progress, and of the appr.25- 30 percent that will progress,close monitoring of the cancer will provide the patient with amply opportunty for treatment.

Active Surveilance for delayed treatment is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. The pathologic stage of patients who are closely monitored, is similar to initally treated patients with LRPC, so the treatment decisions will be very similar. I've been doing Active Surveilance for the past three years . I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment

PS By the way, it is critical for any patient who has been diagnosed with P Cancer to have a second opinion of the biopsy by an independent expert pathologist who specialized in prostate cancer so that he will not be under or over treated

dcirrotti
Posts: 33
Joined: Aug 2012

Who do you recommend for a second opinion of the biopsy.

Swingshiftworker
Posts: 609
Joined: Mar 2010

Kaiser NorCal does have CK but (the last I heard) it does NOT use it for PCa -- only cancers that it considers "inoperable" or otherwise suitable for treatment by other radiation methods (particularly LDR BT).

Don't know if this policy has changed or not but doubt that it has since Kaiser NorCal has a huge investment in equipment and personnel promoting LDR BT in Roseville and surgery generally.

If you want to find out for yourself, just call the Norcal CyberKnife center in South San Francisco here: http://www.permanente.net/homepage/kaiser/pages/d17226-top.html

BTW, my diagnosis was very similar to yours. I was 59 at the time and had only 1 of 12 cores (less than 1/2 mm involved).

IMHO, it is not "critical" to get a 2nd opinion on your biopsy but it is certainly "advisable." I got my 2nd opinion done by Dr. Jonathan Epstein (who is considered one of the expert in PCa assessment) at Johns Hopkins. It only cost me $170 and you can find the information their 2nd opinion service here:

http://www.hopkinsmedicine.org/international/patients/second_opinions.html

Here's also an article about Dr. Epstein and his expertise in rendering 2nd opinions; you can ask that specifically for him to assess your slides for the 2nd opinion:

http://www.hopkinsmedicine.org/hmn/F02/feature2.html

FYI, my biospy at Kaiser was confirmed by Dr. Epstein.

Good luck!

bobbird
Posts: 1
Joined: Aug 2012

My treatment was in Naples, Florida, May 08. I found CK for prostate to be convenient (5-90 minute treatments on consecutive days), painless (hop off the table and go to work or whatever), no side effects, cancer gone (0.02 psa last check up 4 years after treatment). CK should be considered as a treatment option to consider by all those diagnosed and evaluating various possibilities.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Welcome to the forum! It's great to see another CyberKnife patient. It's interesting to see that your treatments in 2008 were each about twice as long as mine were in 2010. I am assuming that was because you were one of the early ones (pioneers)and that the machines and procedures have evolved or was it something else?

Glad to see you have had a hassle free recovery.

K

alb1208
Posts: 6
Joined: Jan 2012

I am 44 years old and was diagnosed about a year ago. My original biopsy showed 1 of 12 with only 2% and a Gleason of 6. My PSA was 3. I was told by a few docs to do active surveillance. I did several PSA tests over the next six months and it bounced around from 3 to 6 and then 9 and then down to 6 again. What do you conclude from that? After consulting several urologists and surgeons , oncologists, family docs to discuss options from surgery (open and robotic), external beam, brachy, cryo, HIFU, etc., the consensus was surgery due to my age. Surgery never felt right to me and I was really considering going to Sarasota, FL (Datoli)for a combo of brachy and external beam treatments. After thinking that would be too much of a strain on my family (I'm divorced with 3 little kids), I decided maybe I should listen to the majority and scheduled a visit to Orlando, FL to talk with Dr. Patel about robotic surgery. Getting cold feet again, I contacted the University of Miami Sylvester Cancer Center (I live in South Florida) and met with Dr. Alan Pollack, an oncologist. Dr. Pollack felt I would be a good candidate for surgery, external beam, brachy and even active surveillance and he was really the only doc that wasn't trying to sell me on his services.
Long story short, Dr. Pollack was conducting a study at the Cancer Center using the CK. Instead of 5 heavy dose treatments over 2 weeks, it pretty much used the standard 8 weeks (technically 39 treatments) of daily lower dose treatments, but using the CK.
To me this was the best course of action as I would gain the benefit of the CK's accuracy and not be exposed to heavy doses (even though over the course of 8 weeks, it was about the same total grays). The first dose was 12 grays and the other 38 were 2. The study also required a surgical balloon inserted in the rectum before each treatment. This was done to seperate the prostate from the rectum and bladder.
After agonizing over this, I volunteered to be in the study which was done to evaluate the effectiveness of the CK using one initial heavy dose of radiation followed by 38 small doses. The balloon was no fun and going every day for 8 weeks was certainly a disruption in my work day, but fortunately the cancer center was only 20 minutes from my office and it went by pretty quickly. Throughtout my treatment, I continued going to the gym, working, playing with my kids, having sex, and living my life exactly as before.
I have been done with my CK treatments now for about 9 weeks and feel good. I did have some urgency and frequency issues during the last few weeks and for about 4 after. Some gas and soft stools too, but nothing too bad and nothing you would likely notice if you weren't paying so much attention to all your bodily functions. No incontinence and my ED condition which I had prior to treatment, has not gotten worse. I was using Cialis before treatments and it still works fine.
I go in for a PSA test and an MRI in about 3 weeks and will keep you all posted. I had A PSA test about 3 weeks ago and it has already come down to 3. Doc says not to read too much into it as my PSA bounces around so much. However, the fact that is down to level when I was initially diagnosed is likely a good sign. When the fiducials (gold marker implants that are used to line up the radiation beams) were inserted before the treatments started, I also had a biopsy done. This biopsy showed cancer in an area totally different than the biopsy I had about 7 mos prior. It was also more aggressive (Gleason 7, 15%). That was kinda scary. No way could I have continued active surveillance.
Like all of us, making the decision was more than half the battle. Several urologists and even a oncologist (let alone some family) think I made the wrong decision. I know I didn't but what is right for me may not be right for you. No matter the pressure you feel from others, keeping plugging away until something feels right (as long as you aren't in jeopardy of spreading outside the prostate). I am happy to talk to anyone privately about my experience. All my best. ALB

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Alb,

Thanks for sharing your CK experience. I knew that they were using the CK machine to basically deliver an IMRT-like radiation dose and take advantage of the inherent accuracy of the equipment but I had never actually heard from anyone who had done it.

I hope you continue to post your progress and best wishes for a prompt and successful recovery.

K

Swingshiftworker
Posts: 609
Joined: Mar 2010

Unlike Kongo, I wasn't aware that anyone was doing such a study of the use of CK involving such low doses and high number of treatments.

I avoided surgery for pretty much the same reasons you did but got the 1 wk/every other day/4 high dose treatment instead. Interesting that they inserted a balloon in your rectum before each treatment (as is done w/proton beam therapy) considering the lose dosage you received.

FWIW, I think you received much more radiation in the study over 8 weeks than most of us received in a week. I received around 38 Gy (9.7 each) over 4 treatments and, if your #'s are correct, you received 88 Gy over 39 treatments. Guess the purpose of the study is to compare the difference between the standard high dose/low frequency treatments vs low dose/high frequency treatment plans and protection of the rectum was probably warranted considering the high total dosage you received.

Like you, I had no major side effects and everything still works fine. My PSA has also bounced around (even more than yours) and I'm still not below 1 two years after treatment. My RO says "not to worry" but it's hard not to do so when I've read so many reports from other men who have received CK treatment with PSA scores below 1 only 3-6 months.

Looking forward to further reports from you as time goes on. Good luck!

hopeful and opt...
Posts: 1268
Joined: Apr 2009

Apparently there are studies that show that hormome therapy along with radiation improve outcome. Is this appropriate for cyberknife as well?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Hopeful and Optimistic,

I know hormone therapy is sometimes used in conjunction with CyberKnife. I think the criteria is the initial staging and Gleason score. Men with low risk Gleason 6 who choose CyberKnife probably would not gain additional benefit that is with the side effects. Men with a Gleason 7 who choose CK may have a different view,

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