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3 Month Post CyberKnife Update Results

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Kongo
Posts: 1167
Joined: Mar 2010

BACKGROUND: Diagnosed in March 2010 at age 59 after a PSA from a routine physical had increased to 4.3. DRE normal, no physical symptoms, prostate was not enlarged, no history of PCa in family. Biopsy revealed 1 of 12 cores graded at Gleason 3+3=6. Second biopsy confirmed initial pathology. Staged at T1c. Bone scan, chest x-ray, and blood panel were normal.

Primary physician, urologist, and oncologist recommended surgery. Additional consultations were taken at Loma Linda Medical Center for proton treatment, IMRT treatment using the Varian RapicArc machine, and SBRT using CyberKnife. I also researched and consulted about Active Surveillance (AS) as an option, and investigated Cyrosurgery, High Intensity Focused Ultrasound (HIFU), and brachytherapy (seeds).

I elected to be treated with SBRT using CyberKnife.

TREATMENT: After work ups which included another PSA test, yet another biopsy opinion, MRI and CT scans, I had four gold prostate fiducials placed via the perineum so that CyberKnife could track the movement of my prostate in real time during treatment. After another CT scan verified the fiducials were stable, I began treatment in June 2010, which consisted of 5 sessions, each 45 minutes in length, conducted every other day. I received 5 fractions of radiation at 7.25 Gy per session for a total heterogeneous dose of 36.25 Gy. The biological equivalent dose (BED) was 91 Gy.

EFFECTS AND FOLLOW UP: Following my morning sessions I went to work and resumed a full work and travel schedule without any limitations or effects. One month follow up had zero clinical symptoms with no effects of tiredness, urinary issues, nocturia, pain, burning, blood in urine or stool, and no erectile issues.

At three months (yesterday) my PSA had dropped to 1.35 which is on the expected glide slope for post CyberKnife PSA decline. PSA nadir is typically reached between 18 and 30 months. I still have had no side effects with either urinary or rectal toxicity and have had no decrease in sexual performance.

Robert1941
Posts: 27
Joined: Oct 2010

would this work for me? my doctors told me I was to young for radiation. i am 61 yrs young and in good shape. i don't know what a lot of what you wrote means but it looked like it worked for you and you are younger then me

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

Robert, welcome to the forum and I'm sorry you find yourself dealing with prostate cancer but there is a lot of good information on this site that can help you make the tough decisions ahead.

In regards to your question, I suggest that you investigate whether or not this procedure is for you by talking directly to a doctor that specializes in CyberKnife. Your earlier post indicated you live in Northern Virginia and Georgetown University has a CyberKnife center that I am sure would be happy to answer your questions about elibibility. From your previous posts the conditions you describe would seem to make you a good candidate for any number of treatment options.

Regarding your age vis a vis radiation, I suggest that you ask your urologist to clarify his meaning about being too young for radiation as thousands of men each year routinely receive radiation treatment for prostate cancer that are as young or younger than yourself.

Best of luck to you.

mrspjd
Posts: 688
Joined: Apr 2010

Great news, & thanks for the thorough update. Wishing you all the best for continued success!
mrs pjd

Swingshiftworker
Posts: 623
Joined: Mar 2010

That's good news, Kongo!

For purposes of comparison, I only had 3 markers placed after an MRI and CT but no follow up CT was done to confirm placement. The CK machine verifies marker location prior to each treatment, so I assume UCSF felt that it was unnecessary to do a 2nd CT before the 1st treatment.

It's been just a week & 1/2 since my last treatment on 9/22. Received 4 heterogenous treatments of 9.5Gy each for a total of 38. Was not told the BED equivalent, but based on the article you referred me to previously, BED should be 96Gy, assuming an a/b ratio equal to 3Gy. So, most likely received a slightly higher dosage than you.

Urination frequency is about the same as before, but when I have to "go", I really have to "go" -- difficult to impossible to hold it. Guess you'd call that "increased urgency." Stools were a little runny afterward, but I had that problem before. So, not sure if that's entirely due to the treatments or not. Imodium fixes it. Also saw a little blood during one BM, but none since.

Sexual sensitivity and performance actually has INCREASED!! Don't ask me why or how. I'm definitely not questioning (or unhappy) about it. Still have seminal fluid and ejaculate. Read somewhere that some men do not lose seminal fluid after CK treatment. I'm hoping that I'm one of them, but won't be surprised if it goes away in time.

Like you, I felt no noticeable effects and had no physical limitations following any of the four treatments. I am leaving for a 2 week vacation to Mexico tomorrow. Only worry is about urgency but, since I'm a guy (why else would I have this problem?), if I have to go, I should be able to find a place to "go" (legal or not) and, if I'm driving, I'll just use a bottle. LOL!

First PSA test following treatment scheduled for December 17th.

OBTW, I haven't eliminated dairy or red meat from my diet as you have, but I don't eat much dairy (no milk and only a little cheese) anyway. However, cut out caffeine and alcohol pretty much out of my diet and that has dropped my blood pressure over 20pts. Use to be borderline hypertensive and am now "normal."

Had a weird blip in my PSA following the biopsy in Jan 2010. It shot up to 29.7 in March then fell back to 8.6 in April and 5.9 in June. The PSA prior to the biopsy was 4.5. No baseline PSA taken before treatment. Hopefully, the test result in December will be substantially below all of those numbers.

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Kongo
Posts: 1167
Joined: Mar 2010

Swing, I hope you have a great time in Mexico. If you should run into any urgency issues there (and from what you describe I wouldn't think that is going to be an issue) you can always pick up some Flomax. I was given a standby perscription when I finished my treatment but ended up not needing it. Sometimes the urgency is just a function of the normal inflammation around the urethrea caused by the radiation and OTC ibuprofen works great for that.

I would agree with your estimate about BED based on the discussion I had with my doctor about it yesterday. The high BED is really a good thing as it takes about 61 Gy to be lethal to the cancer but before IMRT and CK they were having difficulty getting doses above that range without causing significant toxicity that made the whole thing moot. Being able to achieve such a high BED without damaging surrounding organs is really one of the keys that makes the whole thing work so well with minimal side effects and lower risk of long term complications common with earlier forms of radiation.

It will be interesting to compare PSA drops and nadir with our different dosage levels and fraction variations.

Regarding the PSA spike you mentioned, I would think it was most likely an effect of the biopsy. Did your doctors ever indicate to you what might have caused it?

and to mrspjd: Thanks so much for your support and I hope Mr. pjd's treatment is going well for you both.

Swingshiftworker
Posts: 623
Joined: Mar 2010

The urgency "problem" is a new one for me, which I attribute to treatment. I was given some Flomax BEFORE treatment in an attempt to control frequency (not urgency) and stopped using it after it dried up my ejaculate. They didn't tell me that that was a side effect of the drug. I might have kept taking it if it actually helped to control the frequency problem, but it didn't. Started using saw palmetto instead, which seemed to work better and I got my ejaculate back too, which was (and still is) important to me.

I had a couple of "dry" orgasms while using Flomax and I found it really unsatisfactory. So, I'm not going to take Flomax in order to try to control urgency, unless it becomes a bigger problem thanit currently is. I stopped taking saw palmetto after treatment and am only taking cranberry extract currently. May start taking saw palmetto again, if the urgency problem doesn't go away. In the meantime, I'll just have to find the nearest bush or carry a pee bottle w/me. :-)

As for my PSA blimp, no one at Kaiser or UCSF could explain it. Scared the sh*t out of me - 29.7! -- thought I was going to have to have surgery ASAP! Led me to try low dose naltrexone in addition to the saw plametto as well as pomegranate and cranberry extract in order to control it. Don't know if any of those things helped, but fortunately by June (six months after the biopsy) the PSA reading dropped almost back to where it was before the biopsy. All I want now is for the PSA reading in Dec to be even lower.

Keep your fingers crossed!

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Kongo
Posts: 1167
Joined: Mar 2010

Swing, since there have been zero failures so far in the low risk group...I'm pretty sure your PSA is heading south. Try the Advil. I really hope you enjoy yourself in Mexico. You've earned it. I'll be taking a week off in NYC next week and plan to see some shows. We both have much to celebrate.

BRONX52
Posts: 156
Joined: Apr 2010

Great news on your recovery.Sounds like everything is on track. Enjoy your trip to NYC---It's a great city and I'm sure you'll have a nice time.--Dan

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Kongo
Posts: 1167
Joined: Mar 2010

Dan, thanks for your encouragement. NYC is one of our favorite places and we have spent a lot of time there over the years. We're very much looking forward to spending some relaxing time there again.

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lewvino
Posts: 1004
Joined: May 2009

Relaxing time in NYC? Is that possible with all the hustle and bustle of the City? LOL.

I also enjoy NYC and am going up the end of Oct to visit my Oldest son. I always enjoy going up there but after a few days in the big apple I'm ready to get back to our place in the country on the river!

Enjoy your time.

Larry

hopeful and opt...
Posts: 1290
Joined: Apr 2009

will also be in NYC

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mrshisname
Posts: 186
Joined: Feb 2010

I think the cyberknife procedure sounds very exciting and I'm so glad you are having great results. Had hubby been willing to wait a little longer for treatment (he wasn't), I wanted him to consider this. But its good to know these details should (god forbid) any other members of our family have to make this decision. Please keep updating guys!!

dasto
Posts: 11
Joined: Nov 2010

Kongo,
I'm new to this site and PCa. My profile is similar to yours. How did you decide between Proton Therapy and CyberKnife?

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Kongo
Posts: 1167
Joined: Mar 2010

Hi, dasto, and welcome to the forum. I’m sorry that you too have to sort through all the options in dealing with prostate cancer.

In my own case I looked at several potential treatment options including surgery, brachytherapy, active surveillance, proton treatment, IMRT, and SBRT with both the Varian and CyberKnife systems. After reading several books on prostate cancer, looking at a lot of studies, and meeting with six specialists I ended up building a matrix that highlighted the advantages and disadvantages of each treatment option according to my individual priorities and ended up ranking them.

For me, quality of life was the most important factor in seeking a treatment. I wanted to pursue an option that had a high likelihood of successfully treating the cancer while affording me the best potential of maintaining a quality of life closest to what I enjoyed before diagnosis. In the end, I felt SBRT was best for me. I ranked proton treatment as my second choice.

I was very impressed with the staff at Loma Linda where I consulted for proton therapy. I particularly liked their philosophy of treating the whole man and not just the cancer. In the end it came down to two things that led me to CK over proton.

Proton therapy uses protons instead of photon x-rays to address the cancer. In doing this there is a phenomenon known as the Bragg peak where the proton system adjusts the proton beam to concentrate its energy precisely where they want it on the prostate. When I looked closely at the various fall off points of the Bragg peak I could see that there was a small area of transition in the dosage curve (peak) that represented the possibility of delivering protons to surrounding tissue where it wasn’t wanted. Proton also does not take into account the dynamic movement of the prostate. Instead they attempt to immobilize the prostate via a saline filled balloon inserted in the rectum. After looking at this methodology compared to CK, it seemed to me that CK had the ability to more accurately control the delivery of the radiation and account for prostate movement in real time. There is a slightly higher percentage of side effects from proton therapy versus CK which, in my opinion, could be attributed to the accuracy of the delivery system.

The other issue with proton treatment was the time it would take for treatment. Eight weeks (or more depending on schedules and potential cancellations due to equipment glitches) was a lot of time for me to be out of the office and it involved some extra expense in moving to the treatment facility during treatment.

Finally, there are some recent studies that show that proton treatment offers no advantage in long term mortality or rates of recurrence over IMRT, brachy, or SBRT.

In the end, I think it comes down to your individual comfort level with the treatment protocol, the medical team you interact with, and how long you want to be treatment.

Best wishes for finding the best decision for you while sorting through all the data and opinions that are out there.

BRONX52
Posts: 156
Joined: Apr 2010

I just saw a local(Hawaii) prostate cancer discussion which included urologists and radiation/medical oncologists. It was very interesting to see how they freely acknowledged the competition for patients and the costs of the various treatments. One thing that really caught my attention is when they discussed the various radiation treatments and associated costs. In particular, imrt/sbrt vs. proton was discussed. You were spot on about the accuracy of the imrt/sbrt as compared to proton. They showed some slides which indicated that proton could not deliver as accurately as imrt/sbrt. Several photos showed proton affected adjacent areas to the targeted site thereby increasing the possibilty of side effects in the future. Although the cancer eradication rates were about the same for both treatments, the accuracy of imrt/sbrt over proton was something I was not aware of.Something good to know when you think about possible long term side effects. Cost wise, they claimed that proton was about three times more expensive. Don't know how true that is but I do know the cost of my adjuvant imrt treatment. I had 38 treatments over the course of 8 weeks and it cost $63,000. A nice piece of change to say the least. Just thought I would share that info in case it helps anyone who is struggling (as we did) with which treatment option is best for them--- I can't vouch for the accuracy of this info(except for my costs)but I thought it was interesting enough to share---Dan

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Kongo
Posts: 1167
Joined: Mar 2010

Dan,

Thanks for the feedback. One aspect of treatment options that you touch on yet we seldom address (at least in this forum) is cost of treatment. I was a bit surprised at your bill for $63K for IMRT as I thought that treatment was more in the $50K range (Perhaps there is a sunshine tax for treatment in Hawaii). CyberKnife is about $25K give or take. Proton is in the $100K range. I have read that surgery is in the $25-30K range. There are some other costs, obviously, such as biopsy (my biopsy cost was about $5500), fiducial placement was another $5K. Each of my consultant fees were about $800. I am sure these costs vary considerably across the country based on what insurance pay outs are or whether or not someone is self-paying.

I was never quoted a price for any treatment I considered in advance, only whether or not my insurance covered it.

Given the large number of men seeking treatment each year and the enormous cost of the potential treatments, it's easy to see why there is so much competition among the manufacturers and doctors in this area and why competing claims of efficacy are so difficult for the average lay person to sort out.

It's also easy to see why our nation's health care costs are soaring at such a fast rate. From a national perspective, I appreciate the challenge in addressing Medicare coverage for several treatment options for low risk prostate cancer when all of the treatments present similar long term survival rates. Of course, those of us faced with the decisions weigh much more than just long term survival but the luxury of being able to choose between so many options carries a significant cost to our system. I certainly don't have a better answer and I don't want to have my choices restricted by an arbitrary system. I also appreciate that without a financial incentive there is little chance that investments will be made to find newer treatment options. It just seems that it costs way, way too much money.

BRONX52
Posts: 156
Joined: Apr 2010

Everything is a little more expensive here in Hawaii and I believe medical is no exception. I carried my federal gov't medical into retirement so it took care of the lions share of the cost.I could have gone the VA route but I chose the civilian route instead after considering the skill and experience of the doctors. Like you, I just made sure that insurance covered my procedures and wasn't quoted any prices. One thing to note however, imrt is considered outpatient treatment and they hit me with a co-pay of about $1900 from the total cost of 63K. A small price to pay considering whats at stake. The surgery was completely covered as it was inpatient treatment. I'm thankful to have insurance. Some others are not as fortunate and I hate to think that someone with a life threatening disease would be denied treatment due to the inability to pay !!! Dan

Swingshiftworker
Posts: 623
Joined: Mar 2010

Your question was directed to Kongo and felt it was best for him to answer before I did.

I chose CK over PBT for basically the same quality of life reasons (but without the level of critical analysis) as Kongo did. However, I never created a formal decision matrix nor did I analyze the relative effectiveness of PBT based on an analysis of the Bragg theory (even though I learned of it during my research).

Based on my research, I simply determined that: 1) CK provided the most accurate method of radiation delivery, 2) had at least the same prospects for success (or failure) as PBT (as well as BT, IMRT, EBRT and surgery), 3) required less time for treatment (1 wk vs 8-9 weeks) than PBT, 4) presented the probability of fewer side effects than any other treatment method (either radiological or surgical) and 5) medical insurance coverage for CK (but not PBT) was available to me.

Given these determinations, CK for me was a "no brainer" and I have no regrets (yet) deciding to go w/CK over all over available treatment methods. Like Kongo, I have not had any significant side effects -- urinary, sexual or otherwise -- since being treated over a month ago and my quality of life has (so far) been entirely unchanged by the treatment.

That said, the worst part about any treatment (radiological or surgical) is waiting for the subsequent PSA test results. My 1st followup test is in a little over a month and, while there is always some doubt, I am reasonably confident that it will be lower than before treatment and that it will continue to drop (as it has for others) over time. Hopefully, that will come to pass.

dasto
Posts: 11
Joined: Nov 2010

Thanks to Kongo and Swingshiftworker! Your responses are very much appreciated. I am so happy to find this forum. I put some information in my profile. Seems like I started out like many, getting only the surgery or radiation option from the Urologist. I'm a bit farther down the road now with my research and now understand that I have options. However, the decision isn't easy as those on this forum must know firsthand.

I'm getting a lot of information that points to little difference in outcome specific to the cancer, regardless of the modality of treatment. The differences noted seem to be in convenience, side-effects, as well as personal preferences. I'm also starting to conclude (maybe incorrectly) that recurrence of cancer may have more to do with physiology of the individual and not so much with the chosen modality.

I am also tempted to start with watchful waiting, but we (wife and I) just can't get comfortable with that option. One reason is that althought the DRE was negative and I am T1c, all those that have conducted the DRE seem to think the prostate feels more firm on one side.

We visited a Proton facility in Bloomington, Indiana that would be about 1.5 hours from my office. I would approach that option by driving back and forth each day, but don't know how practical that would be in the end. The CK option would be 30 minutes away from my office in Indianapolis. The surgery option or EBRT would each be just 5 minutes away from my office.

I've had three different consultations and my fourth and last will be with Dr. Michel Koch of the IU School of Medicine. Then I want to reach a decision before Thanksgiving.

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Kongo
Posts: 1167
Joined: Mar 2010

Daniel,

Except for the fact that none of those who probed my prostate DRE thought one side was any different than the other, our initial symptoms are very similar. Given your pathology, there really isn't a rush for treatment. I know that's easy for me to say now, but at the time I was consumed with trying to outsmart the cancer diagnosis and find a treatment that would be perfect for me. In your case, the odds strongly suggest that you will likely find success in just about any treatment option.

There are several good threads over the last several months in this forum where the various pros and cons of potential treatment options have been discussed, sometimes with a great deal of passion. At the end of the day, after you have slogged through all the advice, studies, consults, testimonials, opinions, myths, legends, and folklore surrounding this disease you alone have to come up with a choice that conforms to your priorities, acceptable lifestyle, risk, and so forth.

If you haven't done it already, I would suggest you get a second opinion on your biopsy. Your urologist can help you with that. Something else you can do, given that you seem to have a PSA history, is calculate your PSA density and doubling time. Those factors are critical in determining whether or not AS might be a good option for you after all. Even then you may still decide to seek treatment. In my case for example, I had a very low prostate density and a very long doubling time...both strong indicators that AS may have been an appropriate choice, yet I sought treatment anyway on the belief that the sooner a newly discovered cancer is treated, the better the long term odds of avoiding further complications. Those who follow AS would argue that studies show that delaying initial treatment with the type of pathology that I (and you) exhibit could be safely done without risking the effiacy of future treatment. As I said, there's no real right or wrong ansewer here, it's what is best for you.

There are also a couple of books that I would commend to your reading: Invasion of the Prostate Snatchers, The Big Scare, and Jane Plant's book on the impact of diet (in particular dairy products) on prostate cancer. Others I am sure will recommend Dr. Walsh's book but personally, I didn't care that much for it but it is still one you should read and make your own decision about whether or not you agree with many of his conclusions.

One thing that should be obvious if you lean toward the surgical option, whether it be robotic or open, is to find the best surgeon possible as experience here appears to be directly correlated to the amount and severity of post-surgical side effects.

I would also make sure I really understand all of the side effects of every treatment option you are considering.

Good luck.

hopeful and opt...
Posts: 1290
Joined: Apr 2009

you are a candidate for virtually every treatment option....there is absolutely no rush to make a decision since prostate cancer is very slow growing...do your research...

you mentioned that you have one core that is positive...what is the involvement of the core....that is what percent is cancerous....also what are your PSA numbers...what is the rate of your PSA increase?...these may affect your treatment decision.

Kongo gave excellent advice to you.

I have been doing active surveillance for the last year and half...feel free to click my name for more information about my experience.

Swingshiftworker
Posts: 623
Joined: Mar 2010

Dasto: Looks like you've got everything covered. Let us know what you decide.

After I made my "decision" to go/w CK, a HUGE weight was lifted off my shoulders. Even though I had not received any treatment yet, I felt that I had "done" something about the problem and the uncertainty about what I was going to do had passed. The only thing left to do was just getting it done.

So, your desire to make your decision (whatever it is) before Thanksgiving is a good idea. You'll have a much more enjoyable holiday if you do.

Good luck and have a VERY Happy Thanksgiving!!!

Beau2
Posts: 229
Joined: Sep 2010

Kongo,

At one time you said you were on Tricare. Would that be Tricare Standard with a supplement?

I'm looking at doing some insurance switching, and am considering going back on Tricare. Where I once lived it was hard to find doctors who would take Tricare. I'm getting closer to retirement and being Medicare eligible, so Tricare for life (or whatever its called) is beginning to look more attractive.

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Kongo
Posts: 1167
Joined: Mar 2010

Beau,

I use Tricare Standard. I haven't had any difficulty at all getting any doctor, specialist, or facility to accept Tricare and everything I did with respect to prostate cancer was covered. Of course, I am in the San Diego area with a large population of retired military in the area so it's kind of a no-brainer here. I used to have a supplement but my employer no longer carries that as an option based upon a nuance of the 2007 defense authorization bill. I just pay the difference, it's not that much for me and I can go anywhere.

BTW, if you are a Vietnam era vet and did time in-country or on certain ships that made regular port calls in Vietnam the VA will pick up the tab for everything as well as up reclassify your disability percentages. I was on a carrier in Yankee Station during that war so I don't qualify but if you are in that age group, you should check it out.

Beau2
Posts: 229
Joined: Sep 2010

Kongo,

Thanks.

I was not in-country. My neighbor was and as you said his PCa was covered by the VA. I'm not sure of the percentage of the diability he received.

I was looking at Tricare prime (HMO like) but I think I'll go with Tricare standard and add on a MOAA supplement. Thanks again.

dasto
Posts: 11
Joined: Nov 2010

I called CyberKnife of Indianapolis today. This particular practice does not treat prostrate cancer via CyberKnife. They referred me to a CyberKnife facility in Fort Wayne, Indiana. Something about not having the protocol to do prostrate treatment? I think it may be more of a business decision by the Urology group and network(s) that comprise CyberKnife of Indiana. Anyway, Fort Wayne is two hours away.

I asked CyberKnife of Indianapolis about other SBRT practices in Indianapolis. They indicated that St. Vincents Hospital has the Norvalis system. So I called St. Vincents and scheduled a consultation for November 11th, the same date as my consultation with Dr. Koch of the I.U. School of Medicine.

Seems like there is more to learn everyday.

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

Daniel,

As I understand it, you need a prostate cancer specialist in radiology for CK to treat PCa. As you know by now, CK was initially developed to treat brain tumors and then was expanded to treat other soft tumor tissues in other parts of the body. It wasn't until about 2005 that the technology was developed that enables CK to track the movement of organs like the prostate in real time. Given the proximity of the prostate to other organs such as the bladder and colon, the dosage protocols require specialists in radiation planning and some exotic software that enables the machine to compensate for prostate movement in real time using implanted fiducials as a reference point.

Not all centers have the specialists needed to perform this type of planning or they do not have the upgraded equipment necessary to do the prostate protocol. I think this is what they were telling you.

I consulted with a Novalis specialist when I was doing my research. Although I was impressed with the technology, the hospital that was using it had only treated a handful of men in a SBRT scenario. Mostly it was used to deliver dosage in an IMRT protocol. I opted to go with CK locally as they had more experience in my particular cancer.

When you consult with the Novalis people, I would ask them to be very specific in explaining how their approach is similar to and different. My understanding of Novalis is that it does not track prostate movement in real time with the same accuracy as CK and relies more on a body form to hold the pelvic region as still as possible.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Dasto, I just jumped back in here breifly and saw your appointment schedule with Dr. Koch and have to comment. I also interviewed him in my case (I'll post my history below so you can see) He's one of the best Docs in Indy for Prostate from my research and I would have gone with him but just couldn't put myself in the teaching environment vs. a non-teaching environment of a private practice and so I chose Dr Hollensbe and Scott of Urology of Indiana. Hollensbe's coment to me was if you are going to have this done here in Indy either Koch or myself should remove your prostate. You might want to interview Hollensbe and Scott as another surgeon team to consider. I had very good results. Knowing what I know about cybernife through Kongo's all encompassing log about it I may have considered but would have had to travel. You can see my situation is much different than both your's and Kongo's with regard to involvement and is partly why I wanted it physically removed.

If you would like to get in touch and talk just email me to Randy_in_indy@sbcglobal.net

52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores

11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%

Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined

Da Vinci performed 12/29/09 - Dr. Hollensbee & Scott
Sling installed at time of Da Vinci – not sure what name of it is but not the 800 that is causing all the problems. Attached to Coopers Ligament.

Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries

FIRST PSA TEST 2-11-10 <0.1 NON-DETECTABLE

Virtually Pad free 2-20-10

SECOND PSA TEST 5-26-10 <0.1 NON-DETECTABLE

THIRD PSA TEST 9-??-10 < 0.1 NON-DETECTABLE

Notes on Recovery: Was at my desk working (from home office – sales) 6 days following my surgery. No pain to speak of (very lucky as many have some pain) I think because I took the Tramadol they gave religiously and found it to be the best drug in the world. BM’s where the trickiest part and most uncomfortable in the early stages but improved with time – follow the diet they give you!...I strayed off and the next BM helped to get me back on track – I like food very hot and spicy - don’t recommend that for at least a month following surgery. Cream soups, mushroom, celery, and chicken worked great the first week following surgery. Mashed Potatoes…Ah the first time following surgery it was heaven!...the first really solid food I ate…..you will learn to appreciate food all over again as you add back your favorites following surgery when the time is right. Take all the help from everyone around you…it might be a while you get that opportunity again to be waited on hand and foot. Liquids are a concern but some affect people differently it seems reading through the discussion board…I found anything carbonated would cause much leaking…alcohol was not good either…but I justified doing it thinking It’s my training method to work on my bladder control!...lol I love homebrewed beers too much! And am an admitted hop head.

ED path:
Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.
Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery (cannot remember but probably posted on CSN somewhere) had usable erections.

Currently only need ¼ pill to get usable . Day 150 am starting to get semi hard without any drug.

Day 163 had usable erection without any drug!!!

Not finding I can go drugless permanently yet day 169 post surgery.

Still hit or miss on going drugless on day 194 since surgery - July 11, 2010

Still hit or miss on going drugless on day 315 since surgery – Nov 9, 2010

dasto
Posts: 11
Joined: Nov 2010

Thanks for the continued information and support. I shudder at the thought of what would have happened if I had not stumbled onto this forum and all the helpful information.

Randy, thanks for the comments on Dr. Koch. It's good to learn of someone else here locally that can be a source of information. I'll keep your offer in mind and will likely contact you sometime on this journey.

I'll update after our appointments on Thursday.

BRONX52
Posts: 156
Joined: Apr 2010

Just out of curiousity which carrier were you on. I was stationed on the Bon Homme Richard during Vietnam which was homeported in San Diego ( North Island)-- Dan

mrspjd
Posts: 688
Joined: Apr 2010

Dan,
PJD was on the Bon Homme Richard and a few years later he was on the Constellation in Vietnam . Go Navy!

BRONX52
Posts: 156
Joined: Apr 2010

what a small world !!! I was on the "BONNIE DICK", as it was affectionately called by its crew, a little later than pjd. It was 68,69. I also remember the Constellation being over there on North Island with the Bon Homme Richard. Later I moved to destroyers!! Oh the memories. They didn't have the bridge to North Island at the time so we had to catch a boat to get across the bay! Thanks for sharing---Dan

mrspjd
Posts: 688
Joined: Apr 2010

Dan,
Of course, I was just a baby back then (really!...O.K., well, sort of...) and didn't know him when he was in the service...but I've heard the stories! We celebrate our 38th Wedding Anniversary this December!

bdhilton
Posts: 752
Joined: Jan 2010

Yes I remember driving around to get to Coronado from San Deigo before the bridge was put up…I spent a lot of time in Coronado. My Uncle was the Chief of Staff during your period on North Island… His name was Grant Donnelly

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

Dan, Enterprise was my home away from home during that period...72-74. Was in one of the F-14 squadrons out of Miramar. After the war the navy sent me to Purdue for a commission and I served on CRUDES ships with a few carriers sprinkled in: Merrill, Ranger, Fife, WH Standley, Bronstein, Kinkaid, Clark, and finally DESRON 26 (embarked on George Washington) before I hung up the uniform.

We would need another forum to go into all the West Pac stories....Olongapo, Subic City, Pattya, Perth, Yoko, ...

Swingshiftworker
Posts: 623
Joined: Mar 2010

If I didn't know better, based on this off-topic discussion, I'd think that PCa was just caused by exposure to big boats and/or sea water. Funny . . . !!!!

hlimor
Posts: 2
Joined: Jul 2011

Is Tricare Standard a Humana product, or administered by Humana? Was Cyberknife coverage standard?

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

hlimor,

Tricare Standard is not part of the Humana insurance coverage plan, at least as far as I know. Tricare is for military members (both retired and active duty) and their families. With Tricare Standard I am able to go to any doctor I choose that accepts the coverage, pay a small co-pay, and has a cap on total out-of-pocket expenses. Tricare paid for all of my Cyberknife treatment.

As an aside, I am now 13 months post CK treatment. PSA levels are below 1 at 0.8 which is in the middle of the median range for this time after treatment. I have had no side effects associated with ED, urninary function, bowel toxicity, tiredness. Nothing whatsoever.

More and more studies are appearing that support CK as an excellent treatment option for men with cancer detected early, have a Gleason score of <7, and a PSA of <10. According to my radiologist (I saw him last week) The King 5-year study now shows cancer-free rates at 94%, which I believe, exceeds all other treatments for the 5-year point. The protocol I underwent (part of another larger, multi-site study) used a slightly stronger dosage level and I took my treatments every other day instead of consecutively. At the two year point candidates in this study have had zero failures so far.

If you're considering CK there are several threads in the forum which discuss more technical details of this treatment option for many men and I would urge you to read them as part of the general research you will do while you sort through the treatment options.

Good luck to you.

K

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Very impressive stats. Wish my Gleason would have ben <7 but I am very well pleased with my Davinci Experience so far.

lewvino

Swingshiftworker
Posts: 623
Joined: Mar 2010

Looks like CK has worked well for you.

I'm still at a PSA over 3 after 9 months and my RO says I may have to wait up to 4 years to get below 1 where you are already. Oh well . . .

BRONX52
Posts: 156
Joined: Apr 2010

Hey shipmate
Great to hear of your treatment success!! Your results so far seem to indicate that you are on a path to defeat this beast. BRAVO ZULU----Dan

YTW's picture
YTW
Posts: 63
Joined: Apr 2010

Hello all; Frequent reader, non-frequent poster. I envey you youngsters serving on those big ships. I was on an APD (converted destroyer escourt) for 2 years. Carried Navy seal(Frogmen in those days) and Marine recon. Last ship was an AKA (cargo) that re-supplied the Antartic bases. McMurdo and Hallet Station. My trip there was in 1961. Discharged upon arrival at end of that cruise. Served four years as a radio-op. As far as CK goes. Recieved my treatment here in Cleveland at University hospital. My RO (PHD) is also a URO and has been using CK since its beginning. Just about 3 months post treatment and am still having a slight urinary (urgency) problem but had that prior to discovering Pca. Am able to obtain a useable errection (not quite like the old days) but useable. Age 71

Swingshiftworker
Posts: 623
Joined: Mar 2010

What's up w/all you guys from the Navy? An odd coincidence, but welcome and thanks for uncloaking!!!

Great to find another CK patient -- that makes 4 that I know of: ViperFred, Kongo, me and you. Looks like you got CK about the same time as Kongo. I had my CK treatment about 1 1/2 months ago and like you had the same urinary urgency problem after treatment as I did before. Was taking 2 tabs of 160mg Saw Palmetto extract a day for awhile w/o any noticeable effect, then increased the dosage to 4-6 a day (2 morning, 2 afternoon and 2 evening) and the urgency has gone away. Have missed the afternoon dose a couple of times and doesn't seem to make a difference, so 4 a day may be enough. As for ED, your situation is probably due primarily to your age than to the treatment, as they tell you is likely to happen regardless of the treatment.

Try it to see if the Saw Palmetto works for you or not AND please keep in touch to let us know how your CK recovery is progressing. Good luck!!!

YTW's picture
YTW
Posts: 63
Joined: Apr 2010

I read this site almost every day but have been remiss in my postings.
My first follow up with the RO/UOR is in January and I will post the results.

Jimmy/Cleveland

mrspjd
Posts: 688
Joined: Apr 2010

Just thought it would be appropriate on this day, Nov 11, with the posts about military service sprinkled amongst the PCa posts in this thread and others, to say thanks to all of you have served or are serving. Thank you.

YTW,
Glad to see you have posted again recently, especially with an update. I had read your older posts, knew you were the 4th CK, and had often wondered how you were doing. I even asked Kongo (he can confirm my inquiry) a while back if he knew how you were doing, but if he did, his lips were sealed and he maintained confidentiality!

PJD is originally from the Cleveland area, but ultimately the Navy brought him to California. Small world indeed!

All the best in your recovery and PCa journey,
mrs pjd

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

Mrs PJD

Thanks so much for your best wishes on Veterans Day. While this thread seemed to highlight the number of navy veterans, I am sure there are plenty of army, marine, and air force veterans out there too.

Vietnam veterans who served in-country have a special relationship to prostate cancer as several studies have now correlated a link between exposure to Agent Organge and higher rates of prostate cancer and several other chronic diseases. Fortunately veterans who served in Vietnam or aboard ships that made frequent port calls to Vietnamese ports and who later develop prostate cancer are now compensated with disability and treatment costs as their cancer is presumed to be caused by exposure to Agent Orange. All that needs to be proven is service in country or aboard certain ships and this information should be documented in the DD 214 form given at discharge. I would strongly encourage any veteran who served in Vietnam to contact their local Veterans Administration office for more details and procedures for receiving compensation.

Swingshiftworker
Posts: 623
Joined: Mar 2010

I thought there might be a connection to Agent Orange, but didn't associate it w/Navy service -- just the Army/Marines. Pretty astounding that any service in VietNam is now considered presumptive of cause for PCa. Just another sad consequence of that war.

BRONX52
Posts: 156
Joined: Apr 2010

Although I was in the Navy on a carrier and then destroyers I was deployed inland on several occasions so I didn't have a problem validating the boots on the ground. The va advises that you submit any paperwork that will help support your claim because without the paperwork your claim goes nowhere. They'll send you informational packets on what you need. Just give them a call. I have heard claims taking years to approve/disapprove only because one document was missing !! It is a pain getting all of the paperwork in order but it is worth it. For prostate cancer your disability rating will be 100%. It is not forever though. After a certain period of time, depending on your situation, they will schedule you for a va physical exam. If the results show a psa within acceptable limits they will drop your rating from 100%.whereit goes from there is very subjective and is dependent on good old prostate cancer side effects such as urination frequency, leakage, etc; They also take into account what type of treatment regimen you may be on ie; hormone, chemo, etc. Bottom line is if you don't file you'll never get anything. So if you're a vietnam era vet and believe you qualify, get that paperwork going!! good luck

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

Dan, excellent advice for anyone who served in Vietnam.

Swingshiftworker
Posts: 623
Joined: Mar 2010

I don't read every thread or know the background of every member. So, if you know of any other CK patients on this forum, please share that information. Thanks!

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