3 Month Post CyberKnife Update Results

Kongo
Kongo Member Posts: 1,166 Member
edited March 2014 in Prostate Cancer #1
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.
«13

Comments

  • Robert1941
    Robert1941 Member Posts: 27
    question
    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
  • mrspjd
    mrspjd Member Posts: 694 Member
    kongo
    Great news, & thanks for the thorough update. Wishing you all the best for continued success!
    mrs pjd
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    Good News!
    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.
  • Kongo
    Kongo Member Posts: 1,166 Member

    question
    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

    Welcome
    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.
  • Kongo
    Kongo Member Posts: 1,166 Member

    Good News!
    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.

    Mexico
    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
    Swingshiftworker Member Posts: 1,013 Member
    Kongo said:

    Mexico
    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.

    Flomax & PSA
    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!
  • Kongo
    Kongo Member Posts: 1,166 Member

    Flomax & PSA
    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!

    I hear you
    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
    BRONX52 Member Posts: 156
    Kongo said:

    I hear you
    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.

    KONGO
    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
  • Kongo
    Kongo Member Posts: 1,166 Member
    BRONX52 said:

    KONGO
    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

    Thanks, Bronx
    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.
  • lewvino
    lewvino Member Posts: 1,010
    Kongo said:

    Thanks, Bronx
    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.

    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 optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Kongo said:

    Thanks, Bronx
    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.

    going in New Jersey in Nov to visit with family
    will also be in NYC
  • mrshisname
    mrshisname Member Posts: 186
    very exciting
    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
    dasto Member Posts: 11
    CyberKnife
    Kongo,
    I'm new to this site and PCa. My profile is similar to yours. How did you decide between Proton Therapy and CyberKnife?
  • Kongo
    Kongo Member Posts: 1,166 Member
    dasto said:

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

    Ck Vs. Proton
    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.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    dasto said:

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

    Chose CK for Same Reasons
    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
    dasto Member Posts: 11

    Chose CK for Same Reasons
    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.

    Thanks Kongo and Swingshiftworker
    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.
  • Kongo
    Kongo Member Posts: 1,166 Member
    dasto said:

    Thanks Kongo and Swingshiftworker
    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.

    Dasto
    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 optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    dasto said:

    Thanks Kongo and Swingshiftworker
    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.

    As Kongo wrote,
    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
    Swingshiftworker Member Posts: 1,013 Member
    dasto said:

    Thanks Kongo and Swingshiftworker
    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.

    Have a Happy Thanksgiving!
    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
    Beau2 Member Posts: 261
    Insurance
    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.