Choosing Cyberkife, awaiting insurance OK

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Comments

  • You Made The Best Choice!
    IMHO, you made the best choice for the treatment of low risk PCa. It is, as you have said, really a "no brainer." CK is the most precise method of treating CK currently available and is definitely not TOO aggressive, given its effectiveness and the lower risk of significant side effects associated w/its use.

    I had CK in Sept 2010 at UCSF (but made the decision to go w/CK in April 2010 only 3 months after I was diagnosed w/PCa). Had to wait until July 2010 in order to switch from Kaiser to Blue Shield on order to get CK and then had to wait 3 months to get a place in the machine.

    No urinary or bladder irritation and no ED. The reason my PCa was discovered in the first place because of my complaints about of urinary frequency which I thought were just due to BPH (an enlarged prostate). The frequency was not increased or decreased by the treatment and I still have to pee with some frequency. So, there's really been no change in that regard.

    The only noticeable effect of the treatment has been reduced ejaculate volume, which is to be expected with all forms of radiation treatment. Still have some but very little ejaculate. Don't know if there's still any fertile sperm in it, but the limited ejaculate makes impregnating anyone extremely unlikely. So, if you want to have an more kids of your own, you should bank your sperm before treatment.

    I was rated at Stage T1c and Gleason 6 (3+3). Only 1 core (less of 0.6 mm involved). My PSA was only at 4.5 before the biopsy in Jan 2010, spiked to 29.7 after the biopsy and fell to 5.9 in June 2010 before the treatment. Didn't take (but should have taken) another PSA test just before the treatment to get a more accurate baseline. My PSA has continued to vacillate following treatment from a high of 12.30 in Dec 2010 to a low of 3.03 in Mar 2011 then back to 5.07 in June 2011 then back down to 3.56 in Sept 2011. Needless to say the variability and relatively high continuing level of my PSA scores is disconcerting.

    There are studies that indicate that a reassessment to determine if the treatment has failed is mandated if the PSA level does not drop to between 1-1.5 two years following treatment. That'll be in Sept 2012 for me and, if my PSA level does not drop to that level by then, I'll be asking for an endorectal MRI and a MRSI (magnetic resonance spectroscopic imaging screening to determine the then current status (and location, if any) of the PCa.

    Others, like Kongo, have had much better success w/their PSA testing and have achieved PSA scores below 1 within 3-6 months following treatment. Hopefully, you'll have the same experience as they have but don't be surprised if you don't.

    Good luck!

    Insurance accepted, mold on Dec.13
    Thanks for great feedback SSW and K and all others. Finally the insurance coverage was Ok'ed after three weeks.
    K says the perineum insertion of fiducials is the best. Any more feedback out there from you gentleman on that topic?
  • Kongo
    Kongo Member Posts: 1,166 Member

    Insurance accepted, mold on Dec.13
    Thanks for great feedback SSW and K and all others. Finally the insurance coverage was Ok'ed after three weeks.
    K says the perineum insertion of fiducials is the best. Any more feedback out there from you gentleman on that topic?

    Good news
    The only other thing I would suggest at this point is to have the treatment done every other day versus on consecutive days. Early studies showed that this protocol has fewer issues with temporary urgency following treatment.

    Good luck to you.

    K
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member

    Insurance accepted, mold on Dec.13
    Thanks for great feedback SSW and K and all others. Finally the insurance coverage was Ok'ed after three weeks.
    K says the perineum insertion of fiducials is the best. Any more feedback out there from you gentleman on that topic?

    That's Great!
    That's great, Jackie.

    Where are you going to have the CK done?

    I had my fiducials placed the "normal" way -- transrectally -- w/a prescrption of cipro to be taken afterward and had no problem BUT there is a least one guy here that developed a major infection following the transrectal placement of his. So, there's a risk (the same risk that exists at the time of a biopsy).

    If you're worried just ask for the perineal insertion. Not sure if it can be done in the office or whether a special surgical session has to be set up (like for a HDR BT). Just ask and see what they tell you.

    Good luck!
  • That's Great!
    That's great, Jackie.

    Where are you going to have the CK done?

    I had my fiducials placed the "normal" way -- transrectally -- w/a prescrption of cipro to be taken afterward and had no problem BUT there is a least one guy here that developed a major infection following the transrectal placement of his. So, there's a risk (the same risk that exists at the time of a biopsy).

    If you're worried just ask for the perineal insertion. Not sure if it can be done in the office or whether a special surgical session has to be set up (like for a HDR BT). Just ask and see what they tell you.

    Good luck!

    Transrectal vs perineal?
    Thanks for feedback. Mold on Tuesday, fiducials on Thursday. I am going to Dr. Haas at Winthrop Universiy Hospital in Mineola, Long Island NY

    Ok I will ask about placement method. I tend to get timid about asking questions feeling to change procedures now will inconvenience people. I know that is just me and I got to get over it regarding this serious survival issue.
  • robert1 said:

    The World of Choices
    Hello jackie:

    Given your low risk staging, you have the world of choices at your disposal. I assume you checked out PBT, IMRT and Brachytherapy also. CK is documented as a solid choice for true low risk patients. Impressive cure rate stats with relatively low side effects.

    Good luck!

    thanks
    Starting initial set up procedures this week. Winthrop university hsopital, LOng Island
  • robert1 said:

    The World of Choices
    Hello jackie:

    Given your low risk staging, you have the world of choices at your disposal. I assume you checked out PBT, IMRT and Brachytherapy also. CK is documented as a solid choice for true low risk patients. Impressive cure rate stats with relatively low side effects.

    Good luck!

    thanks
    Starting initial set up procedures this week. Winthrop university hsopital, LOng Island
  • Damage to Ejaculatory Duct?
    Other than infection, blood in the ejaculate is the most common problem following a trans-rectal prostate biopsy. The bleeding usually resolves itself, as it did in my case and fortunately didn't have any infection -- the cirpo they gave me to take before and after the procedure worked.

    Wasn't aware of this before but a quick Google search also revealed that a biopsy can also damage the ejaculatory duct thereby reducing ejaculate. Didn't have that problem myself but this may be the problem you are experiencing which "should" also resolve itself before treatment.

    See the following for a brief discussion of the issue:http://www.medicalnewstoday.com/releases/112975.php

    I did not experience any pain or discomfort following my biopsy but others have reported otherwise. So, some "strains" around the base of your penis (near where the prostate is located) would not be unusual. After all, the urologist just poked 12 holes through your rectum and into your prostate.

    However, you should not be experiencing any significant pain or bleeding; pain is often associated w/infection. Listen to your body and, if anything, unusual is happening return to the doctor (or emergency room) ASAP to get an assessment of the problem.

    Good luck!

    ejaculation cleared up and stronger
    After about 8 weeks blood in semen vanishes and ejaculation contains more fluid.
    Still feeling some minor aches around groin area and also oddly feel tired in knees and legs a lot lately. Probably my imagination.
    Treatment set up for cybe knife starts this week.
    Of course Christmas season is upon us and my company has privatization changeover on Jan 1. I may choose to retire. So much at once is a bit overwhelming.
  • Kongo
    Kongo Member Posts: 1,166 Member

    ejaculation cleared up and stronger
    After about 8 weeks blood in semen vanishes and ejaculation contains more fluid.
    Still feeling some minor aches around groin area and also oddly feel tired in knees and legs a lot lately. Probably my imagination.
    Treatment set up for cybe knife starts this week.
    Of course Christmas season is upon us and my company has privatization changeover on Jan 1. I may choose to retire. So much at once is a bit overwhelming.

    Normal
    Jackie, eight weeks is about right for hematospermia (blood in semen) to clear up after a biopsy. Enjoy it while you can. In the several months following CK you can expect that the volume of your ejaculate to decrease. My experience seems to be similar to others who have undergone this treatment. It doesn't go away it just decreases in volume. No effect on ability to achieve and maintain an erection or orgasm.
  • Active Surveilance for delayed treatment
    Based on your biopsy results, I would consider active surveillance as a treatment option. It may be that you have an indolent cancer, that is not likely to spread, so an ative treatment may not be necessary. I suggest that you see a doctor that specializes in this treatment option, preferably at a major center of excellence. I have been doing this for since, 3/09. You may click my name to see what I have done.
    As far as PSA which is an indicator only, I wonder if you have any other data points that you can provide?

    Also I wonder what the size of your prostate is? There is ratio psa/prostate size the lower the better.....0.15 or better.

    I also suggest that you have an endorectal MRI (combined with a spectroscopy) to see if there is extra capular extension, stage your cancer, see if there is an indication of cancer in one lobe or two and how much cancer.

    Did you have a second opinion from an independent expert pathologist on your biopsy slides...........this is of the upmost importance....it is CRITICAL.

    Getting closer to treatment, and missed this post.
    This post on
    Active Surveilance is actually related to my first initial post regarding Cyberknife being to aggressive an approach at this point.
    Thankks Hopeful, my initial post also contains gleason scores and amount of cancer after biopsy.
    PSA 8 relative to 51 cm prostate size is around 0.15 ratio you mentioned, I think.
    MRI scheduled for Dec. 30.
    Cyberkinfe to begin January 3, 2012.
    I am going to click on your name and see how you are progressing.
    I am nervous about if I am doing the right thing here. Uroligist says velocity of PSA is the reason to go ahead with active treatment. psa 6 in July and psa 8 in August.
  • Kongo
    Kongo Member Posts: 1,166 Member

    Transrectal vs perineal?
    Thanks for feedback. Mold on Tuesday, fiducials on Thursday. I am going to Dr. Haas at Winthrop Universiy Hospital in Mineola, Long Island NY

    Ok I will ask about placement method. I tend to get timid about asking questions feeling to change procedures now will inconvenience people. I know that is just me and I got to get over it regarding this serious survival issue.

    Placement
    Jackie,

    A transrectal placement is all about convenience for the urologist not you. Think about it...why would you insert a device in your prostate after first passing it through feces? To avoid infection you are given antibiotics and in most cases it works but some tests show that nearly 100% of men who have a transrectal biopsy or other transrectal procedure have pathogens in their bloodstream afterward. Most of the time the antibiotics take care of it but not always. One poster here who had CK treatment developed severe infections requiring hospitalization and delay in treatment.

    Not only are you paying for this procedure, you are an informed patient. Your medical team at Winthrop should be able to accommodate whatever your personal desires are.

    Good luck.

    K
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Kongo said:

    Placement
    Jackie,

    A transrectal placement is all about convenience for the urologist not you. Think about it...why would you insert a device in your prostate after first passing it through feces? To avoid infection you are given antibiotics and in most cases it works but some tests show that nearly 100% of men who have a transrectal biopsy or other transrectal procedure have pathogens in their bloodstream afterward. Most of the time the antibiotics take care of it but not always. One poster here who had CK treatment developed severe infections requiring hospitalization and delay in treatment.

    Not only are you paying for this procedure, you are an informed patient. Your medical team at Winthrop should be able to accommodate whatever your personal desires are.

    Good luck.

    K

    Amen Kongo!
    It's your life, your body, your checkbook, YOUR decision...period!

    Randy
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Getting closer to treatment, and missed this post.
    This post on
    Active Surveilance is actually related to my first initial post regarding Cyberknife being to aggressive an approach at this point.
    Thankks Hopeful, my initial post also contains gleason scores and amount of cancer after biopsy.
    PSA 8 relative to 51 cm prostate size is around 0.15 ratio you mentioned, I think.
    MRI scheduled for Dec. 30.
    Cyberkinfe to begin January 3, 2012.
    I am going to click on your name and see how you are progressing.
    I am nervous about if I am doing the right thing here. Uroligist says velocity of PSA is the reason to go ahead with active treatment. psa 6 in July and psa 8 in August.

    As a lay person
    I understand that the biopsy is the critical test. The PSA is an indicator only. It may be that you have an infection that caused the rise, or you had sex, rode a bike, had a hard stool before the PSA. Your doc can treat you for the infection and then do another psa.

    In my opinion, it may be possible that you have an indolent cancer, not likely to spread, and you do not require an active treatment.