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Less than a week after diagnosis - which treatment is best???

2

Comments

  • Kongo
    Kongo Member Posts: 1,166
    dafuston said:

    I was just researching the
    I was just researching the cyberknife! It sounds like a very good option for us. Where and when did you have yours done? We are in the Atlanta, GA area, and there are not too many cyberknife locations to choose from in Georgia. We are willing to travel, however. If you don't mind sharing, did you have any side effects? I am having trouble finding statistics on incontinence or ED with the cyberknife. Thank you for your post.

    CyberKnife
    I had my treatment in Southern California. The facility is Cyberknife of Southern California at Vista, which is a town about 45 miles north of downtown San Diego.

    The attached link is a very recent study of CyberKnife that goes into great detail about how it works and what the statistics are.

    http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

    Personally, I had no side effects at all in the way of urinary or fecal irritation or continence or ED. Some men have reported a sense of urgency in needing to urinate for a few weeks afterward. Treated with Flomax or Advil. Long term side effects are described in the study.

    Not all insurance covers Cyberknife.

    You may wish to look at the patient forum sponsored by the manufacturer of the CK machine at www.cyberknife.com. The forum is moderated by a couple of different doctors from across the country who practice CK for prostate cancer and are quite quick to answer any questions you might have.

    Send me an email through this site if you want to ask any questions on the phone.

    Best to you.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013
    dafuston said:

    I was just researching the
    I was just researching the cyberknife! It sounds like a very good option for us. Where and when did you have yours done? We are in the Atlanta, GA area, and there are not too many cyberknife locations to choose from in Georgia. We are willing to travel, however. If you don't mind sharing, did you have any side effects? I am having trouble finding statistics on incontinence or ED with the cyberknife. Thank you for your post.

    CK Info
    I was treated at UCSF Medical Center in Sept 2010. I had 4 treatments every other day over 8 days (Wed/Fri/Mon/Wed).

    I was a Gleason 6 w/a PSA of 4.5 at the time of my biopsy and 5.9 three months before treatment. I have had no notable side effects following treatment -- no urinary incontinence or sexual dysfunction. My PSA level has been erratic but was 3.72 in June 2011 which was lower than it was before my biopsy in Jan 2010 and lower than before treatment in Sep 2010, but not as low as others have achieved in the same time period. My next PSA test is due at the end of Sept.

    CK was covered for me by California Blue Shield HMO, but it is NOT covered by all insurers. The out of pocket cost quoted to me at UCSF was about $56k. There are CK centers located in medical schools, hospitals and private clinics all over the United States and there are 3 CK centers located in GA listed on the manufacturer's site: http://www.accuray.com/treatment-centers/USA/GA. If you don't like these locations, you can find others by using this same link.

    You probably can't find much info about incontinence or ED w/CK because it rarely happens. The degree of precision with which the radiation is applied to the prostate is simply unparalleled. The computer program adjusts the robotic arm and the table so that it can hit the prostate at 100's of different angles w/varying degrees of radiation, which also avoids unnecssarily radiating and damaging adjoining tissue -- particularly the rectum, bladder, urethra and seminal vesicles. The program also adjusts for movement of the body and organs which is also amazing.

    The link to the study Kongo gave you will provide you with useful information about the efficacy of CK. You can also get info on the technology on the manufactuer's website at: www.accuray.com and information from providers and patients on the CK Patient Forum at: http://www.cyberknife.com/Forum.aspx?g=topics&f=2586.

    IMHO, I think that CyberKnife is absolutely the best choice for men w/early stage PCa. Of course, people will say that my opinion is biased because I chose it for myself, but my prognosis is not yet clear -- ie., we do not know whether it has been successful or not yet, particularly because of my erratic PSA scores -- and I may need some follow up treatment if it fails. Even so, I know of no other PCa treatment which offers the same probability of success, with the greatest convenience and with the least risk of side effects.

    Here is my assessment of the major PCa treatment methodologies in comparison w/CK, which formed the basis for my choice and which assumes someone like me w/early stage and low level PCa limited to within the prostate at the time of treatment. You should be able to confirm what I say below based on your own research of the topics.

    Surgery (open or robotic) has heretofor been considered the "gold standard" for PCa but this statement does not take into account recent advances in PCa treatment and IHMO it is NOT currently the "gold standard" for PCa but is a draconian "cure" that can be worse than the disease itself. Surgery is, in fact, the treatment with the greatest risk of danger to the patient (given the standard risks of surgery) and the greatest risk of side effects (ED and incontinence for as long as a year (and possibly permanently). There are also the risks of malpractice resulting in damage to the rectum, the bladder, seminal vesicles and other anatomical structures which closely adjoin the prostate. For those men who experience continued incontinence, it may be necessary to implant an artificial urinary sphincter in order to control urinary flow, which may or may not be successful. Men who also experience continued ED may need to have a penile implant, as well, in order to simulate normal intercourse. These are worst case examples but they do happen and you can simply do a search on this forum to read the frightful stories of men who have had to deal w/these problems. One thing people who recommend surgery also often fail to mention is that the penis will become visually shorter following surgery. The penis itself is not shortened but, when the prostate is removed, the penis will be drawn into the body in order to make up the void. Men have tried to use vacuum pumps in order to keep the penis extended with limited success.

    Low Dose Rate Brachytherapy (LDR BT) is probably the most common form of radiation treatment recommended for men w/PCa. As you probably already know, BT involves the manual placement of radioactive seeds or varying degrees of radiation in various locations in the prostate in order to kill the cancer. Success rates have been very good w/BT but it never appealed to me for the following reasons: 1) the seeds have a radioactive 1/2 life of about 1 year and you are continually radioactive during that this period, 2) the placement of the seeds and the amount of radiation applied to each seed is subject to "human" error -- the placement can be wrong, the radiation required can be wrong -- which can lead to inadvertent damage to adjoining organs and tissue which can lead to urinary and sexual dysfunction and other complications, 3) the seeds can move and can be expelled through the urethra which is disconcerting in itself but obviously reduces the efficacy of the original seed placement. While incontinence and ED are less prevalent w/LDR BT than w/surgery, it occurs w/greater frequency than w/CK or PBT (see below) and radiation damage to the urethra requiring a TURP (transurethral resection) in order to clear the urethra of scar tissue caused by radiation damage is not uncommon during or following LDR BT treatment.

    High Dose Rate BT is different in that the seeds are not placed in the prostate permanently but only temporarily for a specified amount of time and then removed. There is still some risk of collateral tissue damage but it is not as great as w/LDR BT. If I had to choose between the 2 methods, HDR BT would be my choice.

    Proton Beam Therapy (PBT) has been in use for over 10 years and also has a very good success rate with very low reported side effects. The main reason I chose CK over PBT was because CK was covered by my insurer and PBT was not. However, there are other reasons why CK is preferable to PBT: 1)PBT requires around 40 daily treatments over 8 weeks under the old protocol and around 28 daily treatments under the newer/higher dose rate protocol; in either case this requires you to live near (or move to) the PBT treatment center which is inconvenience and adds significant cost to the treatment, 2) in order to be treated w/PBT you have to be fitted w/a body cast so that you do not move during treatment and you have to have a water filled balloon inserted in your rectum before each treatment in order to prevent rectal damage; the reason for this is that the PBT beam is fixed and cannot be moved. CK is better because it only requires 4-5 treatments and the CK program/equipment adjust for the prostate's position so that no body cast or balloon is required.

    This should give you a starting point for comparing the other major PCa treatment methods to CK. Feel free to ask any more questions that you may have about it.

    Good luck!
  • dafuston
    dafuston Member Posts: 26

    CK Info
    I was treated at UCSF Medical Center in Sept 2010. I had 4 treatments every other day over 8 days (Wed/Fri/Mon/Wed).

    I was a Gleason 6 w/a PSA of 4.5 at the time of my biopsy and 5.9 three months before treatment. I have had no notable side effects following treatment -- no urinary incontinence or sexual dysfunction. My PSA level has been erratic but was 3.72 in June 2011 which was lower than it was before my biopsy in Jan 2010 and lower than before treatment in Sep 2010, but not as low as others have achieved in the same time period. My next PSA test is due at the end of Sept.

    CK was covered for me by California Blue Shield HMO, but it is NOT covered by all insurers. The out of pocket cost quoted to me at UCSF was about $56k. There are CK centers located in medical schools, hospitals and private clinics all over the United States and there are 3 CK centers located in GA listed on the manufacturer's site: http://www.accuray.com/treatment-centers/USA/GA. If you don't like these locations, you can find others by using this same link.

    You probably can't find much info about incontinence or ED w/CK because it rarely happens. The degree of precision with which the radiation is applied to the prostate is simply unparalleled. The computer program adjusts the robotic arm and the table so that it can hit the prostate at 100's of different angles w/varying degrees of radiation, which also avoids unnecssarily radiating and damaging adjoining tissue -- particularly the rectum, bladder, urethra and seminal vesicles. The program also adjusts for movement of the body and organs which is also amazing.

    The link to the study Kongo gave you will provide you with useful information about the efficacy of CK. You can also get info on the technology on the manufactuer's website at: www.accuray.com and information from providers and patients on the CK Patient Forum at: http://www.cyberknife.com/Forum.aspx?g=topics&f=2586.

    IMHO, I think that CyberKnife is absolutely the best choice for men w/early stage PCa. Of course, people will say that my opinion is biased because I chose it for myself, but my prognosis is not yet clear -- ie., we do not know whether it has been successful or not yet, particularly because of my erratic PSA scores -- and I may need some follow up treatment if it fails. Even so, I know of no other PCa treatment which offers the same probability of success, with the greatest convenience and with the least risk of side effects.

    Here is my assessment of the major PCa treatment methodologies in comparison w/CK, which formed the basis for my choice and which assumes someone like me w/early stage and low level PCa limited to within the prostate at the time of treatment. You should be able to confirm what I say below based on your own research of the topics.

    Surgery (open or robotic) has heretofor been considered the "gold standard" for PCa but this statement does not take into account recent advances in PCa treatment and IHMO it is NOT currently the "gold standard" for PCa but is a draconian "cure" that can be worse than the disease itself. Surgery is, in fact, the treatment with the greatest risk of danger to the patient (given the standard risks of surgery) and the greatest risk of side effects (ED and incontinence for as long as a year (and possibly permanently). There are also the risks of malpractice resulting in damage to the rectum, the bladder, seminal vesicles and other anatomical structures which closely adjoin the prostate. For those men who experience continued incontinence, it may be necessary to implant an artificial urinary sphincter in order to control urinary flow, which may or may not be successful. Men who also experience continued ED may need to have a penile implant, as well, in order to simulate normal intercourse. These are worst case examples but they do happen and you can simply do a search on this forum to read the frightful stories of men who have had to deal w/these problems. One thing people who recommend surgery also often fail to mention is that the penis will become visually shorter following surgery. The penis itself is not shortened but, when the prostate is removed, the penis will be drawn into the body in order to make up the void. Men have tried to use vacuum pumps in order to keep the penis extended with limited success.

    Low Dose Rate Brachytherapy (LDR BT) is probably the most common form of radiation treatment recommended for men w/PCa. As you probably already know, BT involves the manual placement of radioactive seeds or varying degrees of radiation in various locations in the prostate in order to kill the cancer. Success rates have been very good w/BT but it never appealed to me for the following reasons: 1) the seeds have a radioactive 1/2 life of about 1 year and you are continually radioactive during that this period, 2) the placement of the seeds and the amount of radiation applied to each seed is subject to "human" error -- the placement can be wrong, the radiation required can be wrong -- which can lead to inadvertent damage to adjoining organs and tissue which can lead to urinary and sexual dysfunction and other complications, 3) the seeds can move and can be expelled through the urethra which is disconcerting in itself but obviously reduces the efficacy of the original seed placement. While incontinence and ED are less prevalent w/LDR BT than w/surgery, it occurs w/greater frequency than w/CK or PBT (see below) and radiation damage to the urethra requiring a TURP (transurethral resection) in order to clear the urethra of scar tissue caused by radiation damage is not uncommon during or following LDR BT treatment.

    High Dose Rate BT is different in that the seeds are not placed in the prostate permanently but only temporarily for a specified amount of time and then removed. There is still some risk of collateral tissue damage but it is not as great as w/LDR BT. If I had to choose between the 2 methods, HDR BT would be my choice.

    Proton Beam Therapy (PBT) has been in use for over 10 years and also has a very good success rate with very low reported side effects. The main reason I chose CK over PBT was because CK was covered by my insurer and PBT was not. However, there are other reasons why CK is preferable to PBT: 1)PBT requires around 40 daily treatments over 8 weeks under the old protocol and around 28 daily treatments under the newer/higher dose rate protocol; in either case this requires you to live near (or move to) the PBT treatment center which is inconvenience and adds significant cost to the treatment, 2) in order to be treated w/PBT you have to be fitted w/a body cast so that you do not move during treatment and you have to have a water filled balloon inserted in your rectum before each treatment in order to prevent rectal damage; the reason for this is that the PBT beam is fixed and cannot be moved. CK is better because it only requires 4-5 treatments and the CK program/equipment adjust for the prostate's position so that no body cast or balloon is required.

    This should give you a starting point for comparing the other major PCa treatment methods to CK. Feel free to ask any more questions that you may have about it.

    Good luck!

    Thank you both for sharing
    Thank you both for sharing your experiences with Cyberknife. That treatment option has definitely shot to the top of our list. It seems to match our goals most closely...now to find a doctor and location that we are confident in to get treatment. We'll keep you all posted.
  • Kongo
    Kongo Member Posts: 1,166
    dafuston said:

    Thank you both for sharing
    Thank you both for sharing your experiences with Cyberknife. That treatment option has definitely shot to the top of our list. It seems to match our goals most closely...now to find a doctor and location that we are confident in to get treatment. We'll keep you all posted.

    Caution
    One thing I would urge you to do is to slow down a bit. I thought I was moving very fast and it took me three months to decide on a treatment. In the meantime I consulted with both open and Davinci surgeons, IMRT radiologists, two oncologists, and Loma Linda for proton treatment. In that time I read over a dozen books and reviewed hundreds of published studies.

    Your husband's diagnosis suggests that you have the luxury of taking your time and thoroughly examining ALL the potential options. Although I am not a surgery proponent (I simply think the risk of side effects are too high) most of the studies I have read indicate that young men such as your husband do very well with surgery and within several months following prostate removal most are not bothered by incontinence and have regained most of their erectile function. Other forms of radiation (such as proton an IMRT) have advantages too. There is a downside to all treatments. My objective was to minimize the downsides based on my individual priorities about quality of life following treatment. I would urge you to go through a similar process.

    Best of luck to you.

    K
  • dafuston
    dafuston Member Posts: 26
    Kongo said:

    Caution
    One thing I would urge you to do is to slow down a bit. I thought I was moving very fast and it took me three months to decide on a treatment. In the meantime I consulted with both open and Davinci surgeons, IMRT radiologists, two oncologists, and Loma Linda for proton treatment. In that time I read over a dozen books and reviewed hundreds of published studies.

    Your husband's diagnosis suggests that you have the luxury of taking your time and thoroughly examining ALL the potential options. Although I am not a surgery proponent (I simply think the risk of side effects are too high) most of the studies I have read indicate that young men such as your husband do very well with surgery and within several months following prostate removal most are not bothered by incontinence and have regained most of their erectile function. Other forms of radiation (such as proton an IMRT) have advantages too. There is a downside to all treatments. My objective was to minimize the downsides based on my individual priorities about quality of life following treatment. I would urge you to go through a similar process.

    Best of luck to you.

    K

    I hear you. We are compiling
    I hear you. We are compiling a list of questions about each of the options including RRP, Brachytherapy, Cryotherapy, Proton, and Cyberknife. Two family members had Brachytherapy, one family friend urologist recommended RRP, we have spoken to several patient advocates who had the cryotherapy with little or no side effects (although I'm sure they wouldn't give you the names and contact information for folks who were unhappy...).

    We plan to do watchful waiting for a period of time while we get a 2nd opinion, meet with a cyberknife physician and proton physician, and weigh all the information. I just meant that so far, the cyberknife option seems to be leading the pack as far as meeting our priorities with the least amount of side effects as possible. Since our current urologist does not use either cyberknife or proton therapy (although Emory is in the process of building a proton facility), I hope that he can refer us to someone who does to be better informed.

    This is definitely not a decision we will make in 2 weeks! Thank you all for helping us translate and navigate!!!
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013
    Kongo said:

    Caution
    One thing I would urge you to do is to slow down a bit. I thought I was moving very fast and it took me three months to decide on a treatment. In the meantime I consulted with both open and Davinci surgeons, IMRT radiologists, two oncologists, and Loma Linda for proton treatment. In that time I read over a dozen books and reviewed hundreds of published studies.

    Your husband's diagnosis suggests that you have the luxury of taking your time and thoroughly examining ALL the potential options. Although I am not a surgery proponent (I simply think the risk of side effects are too high) most of the studies I have read indicate that young men such as your husband do very well with surgery and within several months following prostate removal most are not bothered by incontinence and have regained most of their erectile function. Other forms of radiation (such as proton an IMRT) have advantages too. There is a downside to all treatments. My objective was to minimize the downsides based on my individual priorities about quality of life following treatment. I would urge you to go through a similar process.

    Best of luck to you.

    K

    Voice of Reason?
    Kongo: Like you, I'm no "fan" of surgery but, unlike you, I'm not reluctant to express my opinions against it. FWIW, It never made sense to me why surgery was recommended for the treatment of PCa for men of any age when less draconian alternatives existed.

    Surgery is apparently often recommended for "young" men because it is believed that they will be better able to cope w/the trauma and substantial side effects of the treatment and turns out to be largely true. However, if it is unnecessary to subject men to such risks and consequences, why bother doing so at all?

    We know that ALL men who have surgery have to wear a catheter for 2-3 weeks (and sometimes longer following surgery. We know that ALL men will have to wear diapers for at least a couple of months (and most longer) following that and will have to deal w/the embarrassment of the smell of the diapers and the shame of having to wear diapers and "wetting" oneself during that time period; those men who never regain control will also have to decide whether or not have an artificial urinary sphincter implanted and, even if they do, may still not regain control.

    We know that ALL men will have ED following surgery. Some only for a few months, some for a year or longer and some forever. Those who never recover will have do deal w/the damage to their psyche and self-image associated with their impotency and will have to decide whether to get a penile implant or not. We also know that a man's penis will be visually shorter following surgery -- no exceptions -- because the interior end of the penis that was attached to the bottom of the prostate will now be attached to the bottom of the bladder following surgery. This consequence of surgery may also have psychological consequences.

    The risk of incontinence and ED are virtually non-existent for CK and PBT and are relatively minor problems for IMRT and BT, which are the most common methods of radiation treatment for PCa currently in use. A visually shorter penis is not an issue for radiation treatment, because this problem only occurs because of the physical removal of the prostate. The use of a vacuum tube is prescribed in order to try to lengthen the penis and improve sexual performance following surgery but the effectiveness of this technique is unproven.

    So, again I ask, if surgery is NOT necessary, why even recommend it? Just because it has been traditionally used to treat PCa or because most men who receive surgery are ultimately able to overcome the trauma? That makes no sense to me.

    Granted there may be some men for whom surgery is the ONLY option but there are far many more men who subject themselves to surgery than need to do so. IMHO, the sooner fewer men choose surgery, the sooner there will be fewer men w/PCa who also have to unnecessarily suffer from incontinence, ED and the other humiliating and emasculating effects of surgery.
  • lewvino
    lewvino Member Posts: 1,010

    Voice of Reason?
    Kongo: Like you, I'm no "fan" of surgery but, unlike you, I'm not reluctant to express my opinions against it. FWIW, It never made sense to me why surgery was recommended for the treatment of PCa for men of any age when less draconian alternatives existed.

    Surgery is apparently often recommended for "young" men because it is believed that they will be better able to cope w/the trauma and substantial side effects of the treatment and turns out to be largely true. However, if it is unnecessary to subject men to such risks and consequences, why bother doing so at all?

    We know that ALL men who have surgery have to wear a catheter for 2-3 weeks (and sometimes longer following surgery. We know that ALL men will have to wear diapers for at least a couple of months (and most longer) following that and will have to deal w/the embarrassment of the smell of the diapers and the shame of having to wear diapers and "wetting" oneself during that time period; those men who never regain control will also have to decide whether or not have an artificial urinary sphincter implanted and, even if they do, may still not regain control.

    We know that ALL men will have ED following surgery. Some only for a few months, some for a year or longer and some forever. Those who never recover will have do deal w/the damage to their psyche and self-image associated with their impotency and will have to decide whether to get a penile implant or not. We also know that a man's penis will be visually shorter following surgery -- no exceptions -- because the interior end of the penis that was attached to the bottom of the prostate will now be attached to the bottom of the bladder following surgery. This consequence of surgery may also have psychological consequences.

    The risk of incontinence and ED are virtually non-existent for CK and PBT and are relatively minor problems for IMRT and BT, which are the most common methods of radiation treatment for PCa currently in use. A visually shorter penis is not an issue for radiation treatment, because this problem only occurs because of the physical removal of the prostate. The use of a vacuum tube is prescribed in order to try to lengthen the penis and improve sexual performance following surgery but the effectiveness of this technique is unproven.

    So, again I ask, if surgery is NOT necessary, why even recommend it? Just because it has been traditionally used to treat PCa or because most men who receive surgery are ultimately able to overcome the trauma? That makes no sense to me.

    Granted there may be some men for whom surgery is the ONLY option but there are far many more men who subject themselves to surgery than need to do so. IMHO, the sooner fewer men choose surgery, the sooner there will be fewer men w/PCa who also have to unnecessarily suffer from incontinence, ED and the other humiliating and emasculating effects of surgery.

    Swingshiftworker:
    I

    Swingshiftworker:
    I appreciate how we can openly discuss different treatment options on this forum. I can understand that many have a fear of surgery. I thought I would mention a few comments you made in regard to surgery and my experience. Of course there is a difference between DaVinci and Traditional surgery for Prostate cancer which may be some of the differences noted between my experience and your comments.


    1. I don't beleive that the catheter is standard for 2-3 weeks of use after surgery (at least davinci). I had my cath for about 10 days. I dreaded it and the thought at first but it wasn't as bad as I feared it would be. Some Doctors are removing the cath following davinci around 5 days. I even asked my Doctor about this and his response was that in his opinion that the ideal time was around the 8-10 days for optimium healing. Since my 8th day fell on a Saturday I had to wait till a Monday for the office to be open.

    2. I don't believe that All men have to wear diapers. This was a 'fear' of mine also. Myself and several other men that I know never wore a diaper following Davinci. Many will use a 'pad' for a time but not an adult diaper. I had excellent success and used 1 pad the day the cath came out. When I discussed 'my fear of adult diapers' with my wife (A RN Nurse) She mentioned that many who use 'support forums' such as cancer survivor network post 'worse case stories' since they need additional support. Many times the ones with excellent results are on the forum for a short time and then drop off for various reasons such as excellent results or not feeling they need support anymore.

    I know several men that had various forms of radiation for their primary treatment and are having severe side effects from treatment. Radiation scaring etc. One man that goes to church where I do had Proton for his treatment and then less then one year following treatment developed Bladder cancer. He is fighting a different battle with a different plan than I am or the neighbor across the street from where I live that had Davinci.

    I would agree with you that if surgery is NOT necessary, why recommend it? I beleive that unfortunately falls back to the doctor pushing what their speciality area is. My own local urologist is an open surgeon. He carefully discussed ALL options with me laying out the risks and side effects of each. He even went so far to tell me that no matter which option I chose he would still provide me my primary care for PSA testing. He even gave me names in the different areas of doctors that he thought would do the best for me. I ended up as I have mentioned choosing a Davinci Doctor to treat Gleason 7 and have not regretted my decision at all. Yes I still see my local urologist for my follow up PSA testing.

    My daughter has just started Med school at Loma Linda University which is known for their Proton Therapy. This week is her second week of med school training. She told me yesterday on the phone that several doctors came in from various fields and discussed their various specialities with the new students. She thought it was extremelly interesting that a Doctor showed them a video on the Davinci Prostate cancer treatment rather then a video on Proton treatment. Perhaps the Proton video will be shown this week but I believe that different treatments are needed for the various stages of this cancer.

    In my 'early days' on the forum I believe that I might have not been as open to other treatments. I think we tend to be overly enthusiatic about what 'worked for me'. I continue to try and educate myself on this cancer and various treatments and then try to point out and answer question on the various offerings to others facing this cancer.

    Thanks for your thoughts and support that you do offer others. I don't recall what your primary treatment was and your Gleason level and would be interested if you care to share again.

    Wishing you much success in your journey with prostate cancer.

    Lewvino
  • robert1
    robert1 Member Posts: 82
    dafuston said:

    I hear you. We are compiling
    I hear you. We are compiling a list of questions about each of the options including RRP, Brachytherapy, Cryotherapy, Proton, and Cyberknife. Two family members had Brachytherapy, one family friend urologist recommended RRP, we have spoken to several patient advocates who had the cryotherapy with little or no side effects (although I'm sure they wouldn't give you the names and contact information for folks who were unhappy...).

    We plan to do watchful waiting for a period of time while we get a 2nd opinion, meet with a cyberknife physician and proton physician, and weigh all the information. I just meant that so far, the cyberknife option seems to be leading the pack as far as meeting our priorities with the least amount of side effects as possible. Since our current urologist does not use either cyberknife or proton therapy (although Emory is in the process of building a proton facility), I hope that he can refer us to someone who does to be better informed.

    This is definitely not a decision we will make in 2 weeks! Thank you all for helping us translate and navigate!!!

    Take Tim to Evaluate the Options
    Hello dafuston:

    When I was first diagnosed with PCa, someone told me that researching my options would be like drinking water through a fire hose. It was.

    I tend to think out a few years, so proven longer-term results were a must. You should demand documented and published evidence that any specific treatmnet option is effective for both the short-term and long-term (5-10-15 years).

    There is only one chance to beat this disease the first time, and fighting recurrnace is not something anyone wants to deal with.

    The more homework you do, the more obvious the treatment decision will become.

    God Bless You both!

    robert1
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013
    lewvino said:

    Swingshiftworker:
    I

    Swingshiftworker:
    I appreciate how we can openly discuss different treatment options on this forum. I can understand that many have a fear of surgery. I thought I would mention a few comments you made in regard to surgery and my experience. Of course there is a difference between DaVinci and Traditional surgery for Prostate cancer which may be some of the differences noted between my experience and your comments.


    1. I don't beleive that the catheter is standard for 2-3 weeks of use after surgery (at least davinci). I had my cath for about 10 days. I dreaded it and the thought at first but it wasn't as bad as I feared it would be. Some Doctors are removing the cath following davinci around 5 days. I even asked my Doctor about this and his response was that in his opinion that the ideal time was around the 8-10 days for optimium healing. Since my 8th day fell on a Saturday I had to wait till a Monday for the office to be open.

    2. I don't believe that All men have to wear diapers. This was a 'fear' of mine also. Myself and several other men that I know never wore a diaper following Davinci. Many will use a 'pad' for a time but not an adult diaper. I had excellent success and used 1 pad the day the cath came out. When I discussed 'my fear of adult diapers' with my wife (A RN Nurse) She mentioned that many who use 'support forums' such as cancer survivor network post 'worse case stories' since they need additional support. Many times the ones with excellent results are on the forum for a short time and then drop off for various reasons such as excellent results or not feeling they need support anymore.

    I know several men that had various forms of radiation for their primary treatment and are having severe side effects from treatment. Radiation scaring etc. One man that goes to church where I do had Proton for his treatment and then less then one year following treatment developed Bladder cancer. He is fighting a different battle with a different plan than I am or the neighbor across the street from where I live that had Davinci.

    I would agree with you that if surgery is NOT necessary, why recommend it? I beleive that unfortunately falls back to the doctor pushing what their speciality area is. My own local urologist is an open surgeon. He carefully discussed ALL options with me laying out the risks and side effects of each. He even went so far to tell me that no matter which option I chose he would still provide me my primary care for PSA testing. He even gave me names in the different areas of doctors that he thought would do the best for me. I ended up as I have mentioned choosing a Davinci Doctor to treat Gleason 7 and have not regretted my decision at all. Yes I still see my local urologist for my follow up PSA testing.

    My daughter has just started Med school at Loma Linda University which is known for their Proton Therapy. This week is her second week of med school training. She told me yesterday on the phone that several doctors came in from various fields and discussed their various specialities with the new students. She thought it was extremelly interesting that a Doctor showed them a video on the Davinci Prostate cancer treatment rather then a video on Proton treatment. Perhaps the Proton video will be shown this week but I believe that different treatments are needed for the various stages of this cancer.

    In my 'early days' on the forum I believe that I might have not been as open to other treatments. I think we tend to be overly enthusiatic about what 'worked for me'. I continue to try and educate myself on this cancer and various treatments and then try to point out and answer question on the various offerings to others facing this cancer.

    Thanks for your thoughts and support that you do offer others. I don't recall what your primary treatment was and your Gleason level and would be interested if you care to share again.

    Wishing you much success in your journey with prostate cancer.

    Lewvino

    See Above
    Lewvino:

    You will find a detailed message above dated August 12th from me to dafuston regarding my PCa history and an explanation of why I chose CK over surgery, BT and PBT.

    I'm happy and relieved that surgery was successful for you (as it has been for others) but my concern is for all of those men (like Trew here) who have had horrible experiences following surgery which, if you read this and other PCa forums, are all too common.

    If I had my way, surgery would be eliminated entirely as an option for PCa treatment, unless no other treatment option is available or appropriate. Obviously, this won't happen because there are too many urologist/surgeons who have a vested interest in continuing to cut open men in order to remove the prostate, even though other equally effective and less damaging and risky methods are available to treat PCa.

    Of course, even radiation treatments as precise as CK and PBT can cause problems in specific instances but, based on what I've read and heard to date, the worst of such problems are minimal and pale in comparison with scope and severity of the problems caused by surgery.

    Although I may have overstated my position in a few instances, I remain unapologetic in proselytizing on this topic because the conventional "wisdom" in the medical literature, profession and community still promotes surgery over other equally effective, cheaper and less damaging and risky alternatives.

    In fact, I recall this forum having a definite surgical bias when I first joined over a year & 1/2 ago. This has changed a bit since I, Kongo and others began voicing our opinions and reported our experiences with CK and other alternative methods of treatment but, even so, the view of surgery as a preferred method of treatment still persists here.

    Also, as far as I know, I am the only one on this forum to consistently make the case against surgery. Even Kongo, who is "no fan of surgery," will not come out as strongly against it as I do. As a result, I feel a duty to make the case against surgery here for the benefit of those who have been newly diagnosed and are unfamiliar with the various options available for treatment, but who have been commonly offered only a choice between surgery and BT for treatment before finding out about other options here.

    So, whenever someone new to this forum (like dafuston) asks "which treatment is best?", I will continue to express my unequivocal opinion that surgery is not the "gold standard" but is, in fact, the WORST choice that a man w/early stage PCa could make for treatment and that there are several clearly better choices available.
  • lewvino
    lewvino Member Posts: 1,010

    See Above
    Lewvino:

    You will find a detailed message above dated August 12th from me to dafuston regarding my PCa history and an explanation of why I chose CK over surgery, BT and PBT.

    I'm happy and relieved that surgery was successful for you (as it has been for others) but my concern is for all of those men (like Trew here) who have had horrible experiences following surgery which, if you read this and other PCa forums, are all too common.

    If I had my way, surgery would be eliminated entirely as an option for PCa treatment, unless no other treatment option is available or appropriate. Obviously, this won't happen because there are too many urologist/surgeons who have a vested interest in continuing to cut open men in order to remove the prostate, even though other equally effective and less damaging and risky methods are available to treat PCa.

    Of course, even radiation treatments as precise as CK and PBT can cause problems in specific instances but, based on what I've read and heard to date, the worst of such problems are minimal and pale in comparison with scope and severity of the problems caused by surgery.

    Although I may have overstated my position in a few instances, I remain unapologetic in proselytizing on this topic because the conventional "wisdom" in the medical literature, profession and community still promotes surgery over other equally effective, cheaper and less damaging and risky alternatives.

    In fact, I recall this forum having a definite surgical bias when I first joined over a year & 1/2 ago. This has changed a bit since I, Kongo and others began voicing our opinions and reported our experiences with CK and other alternative methods of treatment but, even so, the view of surgery as a preferred method of treatment still persists here.

    Also, as far as I know, I am the only one on this forum to consistently make the case against surgery. Even Kongo, who is "no fan of surgery," will not come out as strongly against it as I do. As a result, I feel a duty to make the case against surgery here for the benefit of those who have been newly diagnosed and are unfamiliar with the various options available for treatment, but who have been commonly offered only a choice between surgery and BT for treatment before finding out about other options here.

    So, whenever someone new to this forum (like dafuston) asks "which treatment is best?", I will continue to express my unequivocal opinion that surgery is not the "gold standard" but is, in fact, the WORST choice that a man w/early stage PCa could make for treatment and that there are several clearly better choices available.

    Swingshitworker...Thank you
    Swingshitworker...Thank you for clarifying your position. I would agree with you that in the past I also believe the forum tended to be 'pro' surgery. Most likely since that was the treatment choice of majority of the posters on the forum at that time.

    Two years ago I was surprised to learn about Cyperknife shortly before my surgery date. I did specifically call the closest center to me which at that time was Knoxville Tn. I spoke to a patient coordinator about my case and advised against cyperknife for my case.

    I would also agree with you that surgery should NOT Be the gold standard for all cases. Especially with some of the newer technologies for low grade prostate cancer.

    Also I believe it is a shame that more doctors do not truly give the patient an education as to the various treatment options. Instead they push their particular speciality.

    lewvino (larry)
  • dafuston
    dafuston Member Posts: 26
    lewvino said:

    Swingshitworker...Thank you
    Swingshitworker...Thank you for clarifying your position. I would agree with you that in the past I also believe the forum tended to be 'pro' surgery. Most likely since that was the treatment choice of majority of the posters on the forum at that time.

    Two years ago I was surprised to learn about Cyperknife shortly before my surgery date. I did specifically call the closest center to me which at that time was Knoxville Tn. I spoke to a patient coordinator about my case and advised against cyperknife for my case.

    I would also agree with you that surgery should NOT Be the gold standard for all cases. Especially with some of the newer technologies for low grade prostate cancer.

    Also I believe it is a shame that more doctors do not truly give the patient an education as to the various treatment options. Instead they push their particular speciality.

    lewvino (larry)

    I am so thankful for finding
    I am so thankful for finding this forum. Thanks to all of you who generously share your experiences, newly diagnosed can see the wider variety of options that are available to us for treatment. My husband read all of your posts and we were both overwhelmed by the willingness to share your knowledge, research, and personal stories. We really can't thank you all enough. We have our 2nd appointment with the urologist on Friday and an appointment on Monday with a Cyberknife radiology oncologist to discuss that treatment option. Depending on the information we get at those appointments, we may set up an appointment with a Proton physician. Since Emory is in the process of opening a Proton facility, the urologist may be able to answer those questions as he is with Emory.

    Again, thank you all for your candor, advice, and help with this overwhelming decision. God bless each of you.
  • lewvino
    lewvino Member Posts: 1,010
    dafuston said:

    I am so thankful for finding
    I am so thankful for finding this forum. Thanks to all of you who generously share your experiences, newly diagnosed can see the wider variety of options that are available to us for treatment. My husband read all of your posts and we were both overwhelmed by the willingness to share your knowledge, research, and personal stories. We really can't thank you all enough. We have our 2nd appointment with the urologist on Friday and an appointment on Monday with a Cyberknife radiology oncologist to discuss that treatment option. Depending on the information we get at those appointments, we may set up an appointment with a Proton physician. Since Emory is in the process of opening a Proton facility, the urologist may be able to answer those questions as he is with Emory.

    Again, thank you all for your candor, advice, and help with this overwhelming decision. God bless each of you.

    dafuston:
    You may have this

    dafuston:

    You may have this on your list but you might want to run a pre-approval against your insurance company for the treatment options you decide on.

    Actually two years ago my first choice was going to be Proton since my father had such good success with Proton for his prostate cancer treatment. However on the insurance pre-approval process proton was denied. I did talk with the patient coordinator at the Hospital (Loma Linda, CA) and she advised against the appeal. Her reason was they had filed 3 appeals for other individuals from Tn with the same insurance carrier and they were all denied. I looked at paying out of pocket and then decided on the Davinci. I was even told by the proton center that my individual case was borderline for an excellent proton experience.
  • dafuston
    dafuston Member Posts: 26
    lewvino said:

    dafuston:
    You may have this

    dafuston:

    You may have this on your list but you might want to run a pre-approval against your insurance company for the treatment options you decide on.

    Actually two years ago my first choice was going to be Proton since my father had such good success with Proton for his prostate cancer treatment. However on the insurance pre-approval process proton was denied. I did talk with the patient coordinator at the Hospital (Loma Linda, CA) and she advised against the appeal. Her reason was they had filed 3 appeals for other individuals from Tn with the same insurance carrier and they were all denied. I looked at paying out of pocket and then decided on the Davinci. I was even told by the proton center that my individual case was borderline for an excellent proton experience.

    The Cyberknife is covered by
    The Cyberknife is covered by our insurance. I'm not sure about Proton yet. Thanks for the reminder.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013
    dafuston said:

    I am so thankful for finding
    I am so thankful for finding this forum. Thanks to all of you who generously share your experiences, newly diagnosed can see the wider variety of options that are available to us for treatment. My husband read all of your posts and we were both overwhelmed by the willingness to share your knowledge, research, and personal stories. We really can't thank you all enough. We have our 2nd appointment with the urologist on Friday and an appointment on Monday with a Cyberknife radiology oncologist to discuss that treatment option. Depending on the information we get at those appointments, we may set up an appointment with a Proton physician. Since Emory is in the process of opening a Proton facility, the urologist may be able to answer those questions as he is with Emory.

    Again, thank you all for your candor, advice, and help with this overwhelming decision. God bless each of you.

    You're Welcome!
    You're welcome, dafuston

    I wish you and your husband the best. Please keep us posted on which treatment method you choose and the results of that treatment.

    Regards,
    SSW
  • dgospel
    dgospel Member Posts: 3
    EARLY DETECTION EARLY CURE
    If it is positive treat aggressively! Ever here early detection early cure? Now the latest buzz in prostate cancer is 'oh, it is slow growing, you can adopt the wait and watch with tests every 6 months". Most men die with cancer not of it" DON’T LISTEN
    My biopsy showed 2 small 'slow growth' "spots" my PSA was 4.5- I made and appointment at MD Anderson and they did another biopsy only to see if it was near the edge- it was not according to the biopsy.
    I was given the choice of watching and waiting- Radiation- or radical removal. I am a Pharmacist and had already studied the choices. Radiation, if effective burns the surrounding tissue- thus if you have radiation fist they USUALLY can not do a surgery to follow it up. Watching and waiting is dangerous. I had the Robotic surgery 2 months later and when they did the biopsy post surgery there were 4 cancers, not 2, and one had just escaped the capsule. The doctor was able to get it all we think- another month waiting and you would not be getting the info. Later the doctor told me that the only accurate biopsy was the post surgery one. The gold standard in the treatment of cancer is surgery. Please don’t put it off.
    The side effects have been mild stress incontinence. Not bad just different. And Impotence. The use of Cialis and a Vacuum devise takes care of that and there are corrective surgeries for both when I make up my mind to do it.
    May God bless you both in the years ahead
  • sixsixblue
    sixsixblue Member Posts: 3
    dafuston said:

    Thank you for sharing your
    Thank you for sharing your experience. You have been more helpful than you know! I'm still researching everything, and plan to check into both cyberknife and proton radiation over the next couple of days. My list of questions for the urologist is growing exponentially. Very happy for you and your excellent recovery. I hope to be reporting the same thing for my husband's case soon.

    Your choice
    I too, was recently diagnosed. And like one of the others responding to your post, chose Dr. Smith at the Vanderbilt Medical Center. Your husband's diagnosis mirrors almost exactly what mine was. I am also 50, had 1 out of 10 samples being positive, and Gleason of 3+3. Although that's a minimal amount of detection if there is such a thing, I elected for removal via the robotic method. I chose not to treat my cancer instead hoping for the cure. I cannot say enough positive about Dr. Smith and his staff. I'm six weeks out of surgery and doing fine. I returned to work only six days after surgery even though I still had the catheter. Regarding bladder control, I wore pads the day my catheter was removed and have been dry ever since. As you know, until you've been diagnosed, you can't grasp the amount of questions you'll have. Educate yourself as much as possible and make the best choice you can. If there's anything specific I can help you with please don't hesitate to ask.
  • dafuston
    dafuston Member Posts: 26
    dgospel said:

    EARLY DETECTION EARLY CURE
    If it is positive treat aggressively! Ever here early detection early cure? Now the latest buzz in prostate cancer is 'oh, it is slow growing, you can adopt the wait and watch with tests every 6 months". Most men die with cancer not of it" DON’T LISTEN
    My biopsy showed 2 small 'slow growth' "spots" my PSA was 4.5- I made and appointment at MD Anderson and they did another biopsy only to see if it was near the edge- it was not according to the biopsy.
    I was given the choice of watching and waiting- Radiation- or radical removal. I am a Pharmacist and had already studied the choices. Radiation, if effective burns the surrounding tissue- thus if you have radiation fist they USUALLY can not do a surgery to follow it up. Watching and waiting is dangerous. I had the Robotic surgery 2 months later and when they did the biopsy post surgery there were 4 cancers, not 2, and one had just escaped the capsule. The doctor was able to get it all we think- another month waiting and you would not be getting the info. Later the doctor told me that the only accurate biopsy was the post surgery one. The gold standard in the treatment of cancer is surgery. Please don’t put it off.
    The side effects have been mild stress incontinence. Not bad just different. And Impotence. The use of Cialis and a Vacuum devise takes care of that and there are corrective surgeries for both when I make up my mind to do it.
    May God bless you both in the years ahead

    I agree with early
    I agree with early detection, early cure. We met with the urologist from Emory on Friday and a CK radiation oncologist today. We were less than impressed with Friday's appointment...although we did get more information on Proton therapy and a referral to a facility at U of FL in Jacksonville. The CK appointment was much more helpful and informative. We may be biased, but CK is still the front runner for us. I guess we are of the same mindset as SwingShift, and radical removal just seems extreme and unnecessary at this point. Thanks to everyone else's research and help with websites, etc. I believe we can make an informed decision much more quickly than some of you pioneers who paved the way for us!
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013
    dgospel said:

    EARLY DETECTION EARLY CURE
    If it is positive treat aggressively! Ever here early detection early cure? Now the latest buzz in prostate cancer is 'oh, it is slow growing, you can adopt the wait and watch with tests every 6 months". Most men die with cancer not of it" DON’T LISTEN
    My biopsy showed 2 small 'slow growth' "spots" my PSA was 4.5- I made and appointment at MD Anderson and they did another biopsy only to see if it was near the edge- it was not according to the biopsy.
    I was given the choice of watching and waiting- Radiation- or radical removal. I am a Pharmacist and had already studied the choices. Radiation, if effective burns the surrounding tissue- thus if you have radiation fist they USUALLY can not do a surgery to follow it up. Watching and waiting is dangerous. I had the Robotic surgery 2 months later and when they did the biopsy post surgery there were 4 cancers, not 2, and one had just escaped the capsule. The doctor was able to get it all we think- another month waiting and you would not be getting the info. Later the doctor told me that the only accurate biopsy was the post surgery one. The gold standard in the treatment of cancer is surgery. Please don’t put it off.
    The side effects have been mild stress incontinence. Not bad just different. And Impotence. The use of Cialis and a Vacuum devise takes care of that and there are corrective surgeries for both when I make up my mind to do it.
    May God bless you both in the years ahead

    Ok, I'll Bite!
    I disagree strongly that surgery should still be considered the "gold standard" for PCa treatment based on my extensive comments previously posted in this thread. I also disagree that surgery is NOT possible following radiation treatment. Just read Sophiamia's recent thread (captioned "Salvage Prostatectomy") on his salvage surgery 8 years following brachytherapy treatment.

    However, I do agree that one should not unnecessarily delay PCa treatment. Biopsy results and PSA tests are just "guesstimates" of your condition and doing nothing could have fatal or irreversible consequences.

    The only question is which treatment to pursue. That choice has to be made by each man based on his individual needs/wishes and circumstances but no decision should be made without considering ALL of the options available. Surgery is just one of those options and IMHO is the worst one for those w/early stage and low grade PCa.

    Ciao!
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 **

    Ok, I'll Bite!
    I disagree strongly that surgery should still be considered the "gold standard" for PCa treatment based on my extensive comments previously posted in this thread. I also disagree that surgery is NOT possible following radiation treatment. Just read Sophiamia's recent thread (captioned "Salvage Prostatectomy") on his salvage surgery 8 years following brachytherapy treatment.

    However, I do agree that one should not unnecessarily delay PCa treatment. Biopsy results and PSA tests are just "guesstimates" of your condition and doing nothing could have fatal or irreversible consequences.

    The only question is which treatment to pursue. That choice has to be made by each man based on his individual needs/wishes and circumstances but no decision should be made without considering ALL of the options available. Surgery is just one of those options and IMHO is the worst one for those w/early stage and low grade PCa.

    Ciao!

    some information, see the sentence in quotes

    Active Surveilance for delayed treatment is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. "The pathologic stage of patients who are closely monitored, is similar to initally treated patients with LRPC, so the treatment decisions will be very similar." I've been doing Active Surveilance for the past two and a half years . I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment
  • dafuston
    dafuston Member Posts: 26

    some information, see the sentence in quotes

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

    Decision made
    We met with both the urologist at Emory and the radiation oncologist at Kennestone where the CK facility is. We chose CK, hands down. The marker seeds were implanted this week...the ct scan and MRI are next week, and the 1st of 5 treatments start 2 days later. We have chosen to spread the treatments out over 2 weeks after reading that even 1 day between treatments reduces the chances of rectal bleeding from 38% to 0%. So we are feeling very positive about our choice and prognosis. Again, thank you all for your encouragement and experience.