Choosing Cyberknife

JJPhare
JJPhare Member Posts: 34
in Prostate Cancer #1
Diagnosed in March, 2011, this site was a wonderful complement to my individual study as to which course to take. Much appreciation to Kongo, Swingshiftworker, Silverfox and others who have consolidated their data and efforts in helping to make a complex decision slightly less difficult.
I am 62, Gleason 6, 2/12 cores positive, 10% volume, PSA 14.2. PSA has been 6 -8 since 1996 when 2 biopsies were negative. Kaiser/Colorado Doctors thought that PSA of 6 was my norm so they were not alarmed. When it spiked to 11, 13 and then 14 in 8 months, another biopsy was suggested with the aforementioned results.
DaVinci surgery was not recommended by the urologist because of my being on coumadin for thrombophlebitis since 1993. Radiologists favored external beam but I did not like the potential side effects and number of trips for treatment. CK was discouraged by Kaiser due to lack of data plus it was not covered.
Outside urologists & radiologists consulted for independent thought which eventually led me to Cyberknife. 3 CK machines in Denver area with costs ranging from $20K- $27K. I found one that offered me a substantial self pay discount. Their radiologist is first rate and has worked with Dr. Fuller. Very possible that PCa has been present since 1996 but was missed in the biopsies. Perhaps I've been doing active surveillance unintentionally.
Fiducials were placed by a local urologist 3 days ago who was doing it for the first time but the CK radiologist was in attendance. It hurt a lot even with local anesthetic! MRI / CT in 2 weeks due to my travel schedule and then CK during mid June. Thanks to Kongo, I will get treatment every other day. Will post again in June.

Comments

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #2
    Good luck!
    Good luck and keep us posted on your progress!!!
  • Kongo
    Kongo Member Posts: 1,166 Member
    #3
    Good Luck
    JJ

    Best of luck to you as you go forward, JJ. Hoping that your procedure goes smoothly, is complication free, and that the result is successful. I am still doing great with no side effects.

    K
  • JJPhare
    JJPhare Member Posts: 34
    #4
    Kongo said:

    Good Luck
    JJ

    Best of luck to you as you go forward, JJ. Hoping that your procedure goes smoothly, is complication free, and that the result is successful. I am still doing great with no side effects.

    K

    CK and PSA
    Kongo,

    Thanks for the good wishes.
    One additional point of confusion for me is the
    "acceptable" PSA level after the CK procedure. I am aware that
    the PSA will still be there for months after CK eventually reaching a nadir
    after 18 or more months. Specialists (surgeons, radiologists and urologists) all tell me that PSA level is theoretically gone after RP but there is a difference of opinion post
    CK. What has your (and others reading this) been regarding the PSA? My PSA of 14 went "down" to 10.1 after eliminating dairy so the CK folk are a little more optimistic that I can have promising results.
  • silverfox1
    silverfox1 Member Posts: 36
    #5
    Keep the Faith
    JJ

    I just received my first post CK treatment PSA reading and it dropped from a 4.4 to a 1.2 The oncologist indicated that I had a good response to the CK treatment as I am confident you will also. It took three weeks for the side effects to go away after my last CK treatment. The side effects were minor and managed with Ibeprofen. Today I am feeling great. My bladder function is better today than it was pre-treatment. I would do it all over again if I had to!
  • JJPhare
    JJPhare Member Posts: 34
    #6
    silverfox1 said:

    Keep the Faith
    JJ

    I just received my first post CK treatment PSA reading and it dropped from a 4.4 to a 1.2 The oncologist indicated that I had a good response to the CK treatment as I am confident you will also. It took three weeks for the side effects to go away after my last CK treatment. The side effects were minor and managed with Ibeprofen. Today I am feeling great. My bladder function is better today than it was pre-treatment. I would do it all over again if I had to!

    Keeping the faith
    Congratulations and Huzzah! on your lower PSA after CK. I had the fiducials implanted last week but will not get around to CK until mid June as I will be traveling out of the country.
    You and the other CK patients have been a real encouragement to me with your updates. I do not regret making the decision. I have had some bowel problems after fiducial implants and hope that infection will subside. It was a pretty painful procedure for me conducted by a urologist (chosen by the CK radiologist) who was implanting for the first time. I also seem to have lost ability to have erections and I hope that will also subside.
    I'll get my MRI / CT scan on 6/17 with the CK procedure the following week choosing the every other day option. Will let you know how things go and please keep us informed on your progress.
  • Kongo
    Kongo Member Posts: 1,166 Member
    #7
    JJPhare said:

    Keeping the faith
    Congratulations and Huzzah! on your lower PSA after CK. I had the fiducials implanted last week but will not get around to CK until mid June as I will be traveling out of the country.
    You and the other CK patients have been a real encouragement to me with your updates. I do not regret making the decision. I have had some bowel problems after fiducial implants and hope that infection will subside. It was a pretty painful procedure for me conducted by a urologist (chosen by the CK radiologist) who was implanting for the first time. I also seem to have lost ability to have erections and I hope that will also subside.
    I'll get my MRI / CT scan on 6/17 with the CK procedure the following week choosing the every other day option. Will let you know how things go and please keep us informed on your progress.

    Fiducials and Sepsis
    JJ, so sorry you encountered sepsis on the way to CyberKnife. On the recommendation of my radiologist I had my fiducials placed via the perineum and not by the more common transrectal method. While complications from any prostate penetration via transrectal methods may be low, the number of complications is rising (there have been frequent posts here recently from men who have had problems) and the new bugs are much more resistant to conventioal antibiotics than ever before.

    It is also possible to do a biopsy via the perineum but most doctos continue to prefer the transrectal method because it can be done in the office. I'm just basically leery of anything that penetrates the prostate gland for any reason as it carries unnecessary risks on a variety of issues.

    I hope you see a swift recovery and can continue your treatments soon.

    Best,

    K
  • JJPhare
    JJPhare Member Posts: 34
    #8
    Kongo said:

    Fiducials and Sepsis
    JJ, so sorry you encountered sepsis on the way to CyberKnife. On the recommendation of my radiologist I had my fiducials placed via the perineum and not by the more common transrectal method. While complications from any prostate penetration via transrectal methods may be low, the number of complications is rising (there have been frequent posts here recently from men who have had problems) and the new bugs are much more resistant to conventioal antibiotics than ever before.

    It is also possible to do a biopsy via the perineum but most doctos continue to prefer the transrectal method because it can be done in the office. I'm just basically leery of anything that penetrates the prostate gland for any reason as it carries unnecessary risks on a variety of issues.

    I hope you see a swift recovery and can continue your treatments soon.

    Best,

    K

    Procedure by Perineum
    Thanks for your informed advice Kongo. Although I had read that your procedures were conducted via perineum, things don't truly register until they happen to self. Similarly, one does not know what treatment he will take until he actually is given the news about his PCa. I will advise the CK people about my recent episodes and the experiences of others on this site. Whether they do anything about it is up to them but I am now a huge advocate of biopsy and fiducial placement via perineum. I was placed on 7 days Cephalexin 4/day and started feeling better although I suspect the Internal Medicine doc will want to extend the time of dosage. I will also advocate that they do not recommend urologists who have never done the placement of fiducials, even if he has been practicing nearly 50 years. With over 40 years experience between the radiologists, I find it hard to believe that they never known of infection after a fiduciual placement.
    BTW, as standard procedure with my radiologist, CK is now conducted every other day unless the patient truly wants it done 5 days in a row. It is 120 miles RT for me so I will enjoy the break when we reach that point.

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