New diagnosis, looking at options

wboaz
wboaz Member Posts: 48
edited March 2014 in Prostate Cancer #1
Hello,

I'm returning to the CSN after a bit of an absence. I am a 52 yo and a survivor of stage 4 SCC of the tonsil. Now I have a new diagnosis of stage T1c with a Gleason of 3+3. As a "young" man I have read enough to know that I probably should do something, the question is what. I am leaning towards the seeds (I went through IMRT with head and neck and it was the toughest thing I've done in my life)but I'm interested in what others with a similar diagnosis have done, what their outcomes were and how much they are being affected by side effects.

Thanks,
Wayne
«1

Comments

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

    Welcome to the forum although I'm sorry you have to be here. You've found a good place and there are many men who post here regularly who have faced or are a facing a similar situation and will be happy to share their experiences and offer suggestions.

    First, it would be helpful if you could share a bit more about your prostate cancer statistics such as your PSA, DRE results, how many of your biopsy cores were positive and what perecent involvement they showed, a family history (or not), any other health issues that might affect treatment options, and what your doctors are recommending. You probably know by now that you're on the young side of the diagnosis curve for prostate cancer and the choices you make could have a dramatic impact on the rest of what most likely will be a long life.

    A 3+3 Gleason is a (relatively) good thing as far as prostate cancer goes but knowing the other statistics can help you put in in perspective.

    Certainly brachytherapy is one option but there are many, many others as well for someone with a Stage 1 diagnosis, including IMRT which you already know about.

    One of the first things I would do in addition studying about options and potential side effects is get a second opinion on the biopsy from a different pathology lab. Johns Hopkins is one that is frequently used. Your doctor can explain how to do this.

    ==============================
    Age at Dx: 59, diagnosed in March 2010. PSA 4.3 which dropped to 2.8 after eliminating dairy. Gleason 3+3=6. 1 of 12 cores positive with 15% involvement. DRE normal. No physical symptoms or family history. Prostate size: 47 ml. Stage T1c.

    Treatment: SBRT via CyberKnife. 5 fractions each lasting about 45 minutes over 10 days. Side effects: None.
  • wboaz
    wboaz Member Posts: 48
    Kongo said:

    Welcome
    Wayne,

    Welcome to the forum although I'm sorry you have to be here. You've found a good place and there are many men who post here regularly who have faced or are a facing a similar situation and will be happy to share their experiences and offer suggestions.

    First, it would be helpful if you could share a bit more about your prostate cancer statistics such as your PSA, DRE results, how many of your biopsy cores were positive and what perecent involvement they showed, a family history (or not), any other health issues that might affect treatment options, and what your doctors are recommending. You probably know by now that you're on the young side of the diagnosis curve for prostate cancer and the choices you make could have a dramatic impact on the rest of what most likely will be a long life.

    A 3+3 Gleason is a (relatively) good thing as far as prostate cancer goes but knowing the other statistics can help you put in in perspective.

    Certainly brachytherapy is one option but there are many, many others as well for someone with a Stage 1 diagnosis, including IMRT which you already know about.

    One of the first things I would do in addition studying about options and potential side effects is get a second opinion on the biopsy from a different pathology lab. Johns Hopkins is one that is frequently used. Your doctor can explain how to do this.

    ==============================
    Age at Dx: 59, diagnosed in March 2010. PSA 4.3 which dropped to 2.8 after eliminating dairy. Gleason 3+3=6. 1 of 12 cores positive with 15% involvement. DRE normal. No physical symptoms or family history. Prostate size: 47 ml. Stage T1c.

    Treatment: SBRT via CyberKnife. 5 fractions each lasting about 45 minutes over 10 days. Side effects: None.

    A bit more info
    According to my doc I am one of the "overdiagnosed". My cancer was found only because my PSA went from a 1.8 to a 4. My first set of cores only came up with High Grade PIN. Second set came up with 1 core (out of 12) testing positive and it was less than 20%.

    My doctor said if it was him he would probably just just to the watchful waiting thing but he understood my nervousnessness as I have been through stage 4 hell before. I have some concerns about any radiation and don't much like the nember of side effects with the surgery. I'm interested in hearing what radiation methods had the least bad side effects and also if maybe I should wait for some new drugs to either get a longer track record or be approved.

    Also, if anyone has an opinion on who I should get a second opinion from in the Portland Oregon area I would appreciate it.
  • bdhilton
    bdhilton Member Posts: 803 Member
    wboaz said:

    A bit more info
    According to my doc I am one of the "overdiagnosed". My cancer was found only because my PSA went from a 1.8 to a 4. My first set of cores only came up with High Grade PIN. Second set came up with 1 core (out of 12) testing positive and it was less than 20%.

    My doctor said if it was him he would probably just just to the watchful waiting thing but he understood my nervousnessness as I have been through stage 4 hell before. I have some concerns about any radiation and don't much like the nember of side effects with the surgery. I'm interested in hearing what radiation methods had the least bad side effects and also if maybe I should wait for some new drugs to either get a longer track record or be approved.

    Also, if anyone has an opinion on who I should get a second opinion from in the Portland Oregon area I would appreciate it.

    Have your results read by
    Have your results read by John Hopkins or Northwestern… both have undisputed world renowned pathology departments I had my second read by Northwestern and ended up have Dr Catalona performing surgery at Northwestern (Chicago) and I live in Atlanta… I was 55 at surgery this year and diagnosed at 54…

    Best to you in your journey with PCA...
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    wboaz said:

    A bit more info
    According to my doc I am one of the "overdiagnosed". My cancer was found only because my PSA went from a 1.8 to a 4. My first set of cores only came up with High Grade PIN. Second set came up with 1 core (out of 12) testing positive and it was less than 20%.

    My doctor said if it was him he would probably just just to the watchful waiting thing but he understood my nervousnessness as I have been through stage 4 hell before. I have some concerns about any radiation and don't much like the nember of side effects with the surgery. I'm interested in hearing what radiation methods had the least bad side effects and also if maybe I should wait for some new drugs to either get a longer track record or be approved.

    Also, if anyone has an opinion on who I should get a second opinion from in the Portland Oregon area I would appreciate it.

    CyberKnife Has The Fewest Side Effects
    IMHO CyberKnife is currently the best method of radiation treatment with the fewest side effects -- virtually none -- for early stage PCa patients (Gleason 6; Stage T1c; PSA less than 10 or so).

    Kongo, ViperFred and I (who are all members of this forum) have received this treatment. ViperFred received his treatment over 2 years ago (May 2008)and reports a PSA nadir of 0.034 as of August 5, 2010 and no ED or urinary side effects. That's incredible! Kongo had his treatment about 3 months ago and reports no side effects since then. I just had my last CK treatment (out of 4) at UCSF Medical Center yesterday and have had no side effects since the 1st treatment on 9/15. Reports I received from other CK patients who were treated 2-3 years ago at UCSF were similar to those reported by ViperFred. However, one of the UCSF patients that I spoke w/by email had some urinary irritation about 18 months after treatment, which is not uncommon with radiation treatment, that resolved itself and did not require any medical intervention.

    If you're not familiar w/CK, you can find information about it on the manufacturer's site where there is a open forum supported by CK physicians who actively respond to messages from patients about CK. Here's a direct link to the forum: http://cyberknife.com/Forum.aspx?g=topics&f=2586.

    You can also find some interesting pro-CK info on the following site as well: http://www.iprostatecancer.com. The CBS newsclip on thid site reporting that Blue Shield CA refused payment for CK is now dated, because BS CA is paying for my CK treatment and has issued a recent policy statement approving CK for treating prostate and other cancers. There are also a number of abstracts of medical studies posted on this site that speak to the limited side effects of CK.

    Kongo can give the the technical details better than I, but basically treatment w/CK involves only 4 (9.5 grays each; total 38 grays) or 5 treatments (7 or 7.25 grays for a total of 35 or 37.5 grays) -- either daily or every other day -- using a computerized SBRT (stereotactic body radiation therapy) robotic device that can deliver externallly applied radiation in a very precise pattern that takes into account body and organ movement w/o the need for protective devices or body casts as are used by other methods.

    The total amount of radiation used w/CK is much less than used in other radiation methods (eg., IMRT or EBRT) due to the precision of radiation delivery and the amount of radiation delivered can be varied depending upon the direction of delivery in order to minimize collateral tissue damage (including but not limited) to the rectum, urethra and vascular bulb which (if not properly controlled) can cause rectal bleeding and damage, urinary strictures and incontinence and/or ED (respectively) so commonly experienced with other treatments.

    FYI, you can wear your street clothes and listen to your iPod while receiving treatment on the CK table. The only thing they do is wrap your elbows loosely w/a velcro strap to keep your arms from moving into the path of the radiation beam BUT you can still lift your arms and scratch your nose if you need to. How cool is that?

    You should also look into Proton Beam Therapy, which also has reportedly few side effects, but I think that CK trumps PBT because it requires 40-45 treatments over 8-9 weeks (as opposed to only 4-5 treatments over 1-2 weeks for CK), which requires you to live near the PBT treatment site for a least 2 months, requires the fitting of a body cast so that you don't move during the treatment (since PBT does not adjust for body movement) and the insertion of an air filled balloon in your rectum prior to each treatment (not required for CK).

    BTW, I got a 2nd opinion on my biopsy by Dr. Jonathan I. Epstein at Johns Hopkins University, who is considered one of the foremost experts in prostate biopsy analysis in this country. Cost was $225 and turn around was less than a week.

    Good luck in your search for the treatment method that works best for you!
  • bdhilton
    bdhilton Member Posts: 803 Member

    CyberKnife Has The Fewest Side Effects
    IMHO CyberKnife is currently the best method of radiation treatment with the fewest side effects -- virtually none -- for early stage PCa patients (Gleason 6; Stage T1c; PSA less than 10 or so).

    Kongo, ViperFred and I (who are all members of this forum) have received this treatment. ViperFred received his treatment over 2 years ago (May 2008)and reports a PSA nadir of 0.034 as of August 5, 2010 and no ED or urinary side effects. That's incredible! Kongo had his treatment about 3 months ago and reports no side effects since then. I just had my last CK treatment (out of 4) at UCSF Medical Center yesterday and have had no side effects since the 1st treatment on 9/15. Reports I received from other CK patients who were treated 2-3 years ago at UCSF were similar to those reported by ViperFred. However, one of the UCSF patients that I spoke w/by email had some urinary irritation about 18 months after treatment, which is not uncommon with radiation treatment, that resolved itself and did not require any medical intervention.

    If you're not familiar w/CK, you can find information about it on the manufacturer's site where there is a open forum supported by CK physicians who actively respond to messages from patients about CK. Here's a direct link to the forum: http://cyberknife.com/Forum.aspx?g=topics&f=2586.

    You can also find some interesting pro-CK info on the following site as well: http://www.iprostatecancer.com. The CBS newsclip on thid site reporting that Blue Shield CA refused payment for CK is now dated, because BS CA is paying for my CK treatment and has issued a recent policy statement approving CK for treating prostate and other cancers. There are also a number of abstracts of medical studies posted on this site that speak to the limited side effects of CK.

    Kongo can give the the technical details better than I, but basically treatment w/CK involves only 4 (9.5 grays each; total 38 grays) or 5 treatments (7 or 7.25 grays for a total of 35 or 37.5 grays) -- either daily or every other day -- using a computerized SBRT (stereotactic body radiation therapy) robotic device that can deliver externallly applied radiation in a very precise pattern that takes into account body and organ movement w/o the need for protective devices or body casts as are used by other methods.

    The total amount of radiation used w/CK is much less than used in other radiation methods (eg., IMRT or EBRT) due to the precision of radiation delivery and the amount of radiation delivered can be varied depending upon the direction of delivery in order to minimize collateral tissue damage (including but not limited) to the rectum, urethra and vascular bulb which (if not properly controlled) can cause rectal bleeding and damage, urinary strictures and incontinence and/or ED (respectively) so commonly experienced with other treatments.

    FYI, you can wear your street clothes and listen to your iPod while receiving treatment on the CK table. The only thing they do is wrap your elbows loosely w/a velcro strap to keep your arms from moving into the path of the radiation beam BUT you can still lift your arms and scratch your nose if you need to. How cool is that?

    You should also look into Proton Beam Therapy, which also has reportedly few side effects, but I think that CK trumps PBT because it requires 40-45 treatments over 8-9 weeks (as opposed to only 4-5 treatments over 1-2 weeks for CK), which requires you to live near the PBT treatment site for a least 2 months, requires the fitting of a body cast so that you don't move during the treatment (since PBT does not adjust for body movement) and the insertion of an air filled balloon in your rectum prior to each treatment (not required for CK).

    BTW, I got a 2nd opinion on my biopsy by Dr. Jonathan I. Epstein at Johns Hopkins University, who is considered one of the foremost experts in prostate biopsy analysis in this country. Cost was $225 and turn around was less than a week.

    Good luck in your search for the treatment method that works best for you!

    ?
    I am happy you believe that you selected the best treatment…but your side effects come after a year or two so please do not pretend that your treatment is the best or is without side effects as time will tell …all the best
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    bdhilton said:

    ?
    I am happy you believe that you selected the best treatment…but your side effects come after a year or two so please do not pretend that your treatment is the best or is without side effects as time will tell …all the best

    CK Side Effects
    Didn't say CK had NO side effects.

    Just the fewest when compared to the standard radiation options -- brachytherapy (BT), proton beam (PBT), IMRT and EBRT. FWIW, ViperFred's experience and the reports I've received from the 3 men who have received CK in the past 2-3 years confirms minimal side effects, even after "a year or two." This is also confirmed in the abstracts of CK studies on the iProstate Cancer site, which generally report only about a 3-5% occurance of urinary and rectal complications and just a small number PCa relapses after CK treatment after 2-3 years.

    Obviously, no treatment is PERFECT and CK isn't for everyone, but so far CK appears to be FAR superior to any other method of treatment -- including surgery -- when you take into account the side effects and quality of life after treatment and not just morbidity -- for men w/early stage PCa where the cancer is confined to the prostate.

    These are the facts as reported by others and not just my opinion. So, I'll just let the facts speak for themselves.
  • bdhilton
    bdhilton Member Posts: 803 Member

    CK Side Effects
    Didn't say CK had NO side effects.

    Just the fewest when compared to the standard radiation options -- brachytherapy (BT), proton beam (PBT), IMRT and EBRT. FWIW, ViperFred's experience and the reports I've received from the 3 men who have received CK in the past 2-3 years confirms minimal side effects, even after "a year or two." This is also confirmed in the abstracts of CK studies on the iProstate Cancer site, which generally report only about a 3-5% occurance of urinary and rectal complications and just a small number PCa relapses after CK treatment after 2-3 years.

    Obviously, no treatment is PERFECT and CK isn't for everyone, but so far CK appears to be FAR superior to any other method of treatment -- including surgery -- when you take into account the side effects and quality of life after treatment and not just morbidity -- for men w/early stage PCa where the cancer is confined to the prostate.

    These are the facts as reported by others and not just my opinion. So, I'll just let the facts speak for themselves.

    Shift…I am not here to
    Shift…I am not here to argue with you…but 2-3 men that had cyberknife 2-3 years ago does not make a case study if I am reading you correctly… CK could be the best thing since sliced bread and for sure it was for you and is the best thing for anyone that selects this as their treatment choice but please place thing in perspective. At best and worse the side effets are as good or bad as raditiaotn is....Not evernon has side effects so hope for the best and enjoy the best of the best…Peace
  • Kongo
    Kongo Member Posts: 1,166 Member

    CyberKnife Has The Fewest Side Effects
    IMHO CyberKnife is currently the best method of radiation treatment with the fewest side effects -- virtually none -- for early stage PCa patients (Gleason 6; Stage T1c; PSA less than 10 or so).

    Kongo, ViperFred and I (who are all members of this forum) have received this treatment. ViperFred received his treatment over 2 years ago (May 2008)and reports a PSA nadir of 0.034 as of August 5, 2010 and no ED or urinary side effects. That's incredible! Kongo had his treatment about 3 months ago and reports no side effects since then. I just had my last CK treatment (out of 4) at UCSF Medical Center yesterday and have had no side effects since the 1st treatment on 9/15. Reports I received from other CK patients who were treated 2-3 years ago at UCSF were similar to those reported by ViperFred. However, one of the UCSF patients that I spoke w/by email had some urinary irritation about 18 months after treatment, which is not uncommon with radiation treatment, that resolved itself and did not require any medical intervention.

    If you're not familiar w/CK, you can find information about it on the manufacturer's site where there is a open forum supported by CK physicians who actively respond to messages from patients about CK. Here's a direct link to the forum: http://cyberknife.com/Forum.aspx?g=topics&f=2586.

    You can also find some interesting pro-CK info on the following site as well: http://www.iprostatecancer.com. The CBS newsclip on thid site reporting that Blue Shield CA refused payment for CK is now dated, because BS CA is paying for my CK treatment and has issued a recent policy statement approving CK for treating prostate and other cancers. There are also a number of abstracts of medical studies posted on this site that speak to the limited side effects of CK.

    Kongo can give the the technical details better than I, but basically treatment w/CK involves only 4 (9.5 grays each; total 38 grays) or 5 treatments (7 or 7.25 grays for a total of 35 or 37.5 grays) -- either daily or every other day -- using a computerized SBRT (stereotactic body radiation therapy) robotic device that can deliver externallly applied radiation in a very precise pattern that takes into account body and organ movement w/o the need for protective devices or body casts as are used by other methods.

    The total amount of radiation used w/CK is much less than used in other radiation methods (eg., IMRT or EBRT) due to the precision of radiation delivery and the amount of radiation delivered can be varied depending upon the direction of delivery in order to minimize collateral tissue damage (including but not limited) to the rectum, urethra and vascular bulb which (if not properly controlled) can cause rectal bleeding and damage, urinary strictures and incontinence and/or ED (respectively) so commonly experienced with other treatments.

    FYI, you can wear your street clothes and listen to your iPod while receiving treatment on the CK table. The only thing they do is wrap your elbows loosely w/a velcro strap to keep your arms from moving into the path of the radiation beam BUT you can still lift your arms and scratch your nose if you need to. How cool is that?

    You should also look into Proton Beam Therapy, which also has reportedly few side effects, but I think that CK trumps PBT because it requires 40-45 treatments over 8-9 weeks (as opposed to only 4-5 treatments over 1-2 weeks for CK), which requires you to live near the PBT treatment site for a least 2 months, requires the fitting of a body cast so that you don't move during the treatment (since PBT does not adjust for body movement) and the insertion of an air filled balloon in your rectum prior to each treatment (not required for CK).

    BTW, I got a 2nd opinion on my biopsy by Dr. Jonathan I. Epstein at Johns Hopkins University, who is considered one of the foremost experts in prostate biopsy analysis in this country. Cost was $225 and turn around was less than a week.

    Good luck in your search for the treatment method that works best for you!

    Two Cents
    Swing, I think you summarized the approach and advantages to CK rather succinctly. One thing I would add is that although the actual radiation in your case was 38 Gy, a relatively low dose, the biological equivalent dose (BED) is much higher because of the ability of the CyberKnife process to deliver SBRT extremely accurately, and many studies have shown that the higher the dosage, the better the treatment is in effectively treating the cancer. The problem before CK is that higher doses of radiation also brought about increased toxicity in urinary and rectal side effects. CK seems to have effectively ameliorated that problem.

    Bdhilton well knows that you were not implying the anecdotal cases you referred to constitute a study. His views in this area are all too familiar to regular readers of this forum and I see little value in plowing again that already torn up field.

    But segueing into the subject of CK studies, there is a new study out which summarizes the latest results of several CK trials in the October issue of Technology in Cancer Research & Treatment. Of note, the CK protocol that Swing and I followed closely matches a study performed by Dr. Katz with over 300 patients at his institution in Florida with the following statistics at a MEDIAN follow up of 30 months: Freedom from PSA relapse: 100%; Grade 3+ late stage urinary or bowel toxicity: 0%. Erectile function preservation rate: 87%.
    http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

    By any measure those are encouraging statistics. Other multi-institution studies (of which I am part) are underway and my doctor indicated to me that the early results are tracking in line with the Katz statistics indicated above.

    Regardless of individual opinions, men who elect to be treated with CK certainly have none of the near term recovery issues associated with surgery. Whether or not our early results hold true over the very long term obviously remains to be seen, but all of the indications are that CK will be a very effective treatment for men with low risk cancer.
  • Kongo
    Kongo Member Posts: 1,166 Member
    wboaz said:

    A bit more info
    According to my doc I am one of the "overdiagnosed". My cancer was found only because my PSA went from a 1.8 to a 4. My first set of cores only came up with High Grade PIN. Second set came up with 1 core (out of 12) testing positive and it was less than 20%.

    My doctor said if it was him he would probably just just to the watchful waiting thing but he understood my nervousnessness as I have been through stage 4 hell before. I have some concerns about any radiation and don't much like the nember of side effects with the surgery. I'm interested in hearing what radiation methods had the least bad side effects and also if maybe I should wait for some new drugs to either get a longer track record or be approved.

    Also, if anyone has an opinion on who I should get a second opinion from in the Portland Oregon area I would appreciate it.

    Choices
    Wayne:

    Many would say that AS certainly is a viable course of action in your case of low risk cancer which could very well be considerd indolent. Another statistic you may want to look at is the PSA density which is a measure of PSA divided by prostate volume. They should have calculated your prostate volume when they did the autopsy. A PSA density less than 0.15, as I recall, is a strong indicator of indolent cancer.

    The only thing about someone on AS at your age is that since prostate cancer in an inherently metatastic disease, given enough time it will grow and spread, even if slowly. Given the long life expectancy you have you need to carefully weigh the potential risks associated with waiting for treatment. Most indicators are that if you are diligent with your AS you can detect a change early enough to seek treatment without risk. There is the anxiety issue, but frankly, I think if you are well educated on the prospects of continued cancer growth after any treatment, you are never going to be completely free from anxiety.

    Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early. Only time will tell.

    As Swing indicated, CyberKnife is an emerging treatment some of us have chosen that has early indications of long term cancer free survival with minimum side effects for urinary discomfort, rectal issues, and erectile function preservation. Of course, there are also some who develop side effects and you already know how it feels to be on the losing end of long odds. HDR Brachytherapy, is a more established treatment that has the best results with long term (>10 year) sustaining data. CyberKnife mimics HDR Brachytherapy in its dosage application and the success and side effect curves perfectly match those of HDR brachytherapy for as long as there is CK data...about 4.5 years in the oldest cases. In addition to CyberKnife, SBRT is also administered by other systems such as the Varian RapidArc system.

    Besides CK, IMRT which you already seem to have some degree of aprehension about, is probably the next most used radiation treatment. Although the dosage plans are similar, a big difference between IMRT and CK is that IMRT only adjusts for the position of the prostate on a daily (once a session) basis. CK on the other hand tracks the movement of the prostate in real time and adjusts its position to compensate for frequent prostate movement caused by bladder filling, gas in the colon, or respiratory effects. With its real time adjustment, CK minimizes any radiation to surrounding tissue or organ and thus has a lower incidence of urinary or bowel toxicity.

    Seed implants are quite popular and also effective but have been associated with higher rates of toxicity with the bowel and higher incontinence and ED rates.

    Proton therapy is popular with many although some studies have shown it is no more effective than IMRT and takes about as long to administer.

    Can't help you with who you might consult with in Oregon but I would recommend you take the time to consult with someone who is a specialist in all of the above treatment methodologies to get a first hand perspective of what the doctor who would treat you considers to be the pros and cons.

    I would also consult with surgeons, many of whom will tell you that a very young man such as yourself has a very good statistical probability of full recovery with little side effects.
  • wboaz
    wboaz Member Posts: 48
    Kongo said:

    Choices
    Wayne:

    Many would say that AS certainly is a viable course of action in your case of low risk cancer which could very well be considerd indolent. Another statistic you may want to look at is the PSA density which is a measure of PSA divided by prostate volume. They should have calculated your prostate volume when they did the autopsy. A PSA density less than 0.15, as I recall, is a strong indicator of indolent cancer.

    The only thing about someone on AS at your age is that since prostate cancer in an inherently metatastic disease, given enough time it will grow and spread, even if slowly. Given the long life expectancy you have you need to carefully weigh the potential risks associated with waiting for treatment. Most indicators are that if you are diligent with your AS you can detect a change early enough to seek treatment without risk. There is the anxiety issue, but frankly, I think if you are well educated on the prospects of continued cancer growth after any treatment, you are never going to be completely free from anxiety.

    Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early. Only time will tell.

    As Swing indicated, CyberKnife is an emerging treatment some of us have chosen that has early indications of long term cancer free survival with minimum side effects for urinary discomfort, rectal issues, and erectile function preservation. Of course, there are also some who develop side effects and you already know how it feels to be on the losing end of long odds. HDR Brachytherapy, is a more established treatment that has the best results with long term (>10 year) sustaining data. CyberKnife mimics HDR Brachytherapy in its dosage application and the success and side effect curves perfectly match those of HDR brachytherapy for as long as there is CK data...about 4.5 years in the oldest cases. In addition to CyberKnife, SBRT is also administered by other systems such as the Varian RapidArc system.

    Besides CK, IMRT which you already seem to have some degree of aprehension about, is probably the next most used radiation treatment. Although the dosage plans are similar, a big difference between IMRT and CK is that IMRT only adjusts for the position of the prostate on a daily (once a session) basis. CK on the other hand tracks the movement of the prostate in real time and adjusts its position to compensate for frequent prostate movement caused by bladder filling, gas in the colon, or respiratory effects. With its real time adjustment, CK minimizes any radiation to surrounding tissue or organ and thus has a lower incidence of urinary or bowel toxicity.

    Seed implants are quite popular and also effective but have been associated with higher rates of toxicity with the bowel and higher incontinence and ED rates.

    Proton therapy is popular with many although some studies have shown it is no more effective than IMRT and takes about as long to administer.

    Can't help you with who you might consult with in Oregon but I would recommend you take the time to consult with someone who is a specialist in all of the above treatment methodologies to get a first hand perspective of what the doctor who would treat you considers to be the pros and cons.

    I would also consult with surgeons, many of whom will tell you that a very young man such as yourself has a very good statistical probability of full recovery with little side effects.

    Thanks to all who have replied
    You have certainly given me a lot more to go on! I will contact the Providence medical center tomorrow as they do all of the procedures mentioned above. I had my IMRT with them for my neck and although it was very painful I am alive now when I certainly would have been dead within a year. They have a Cyberknife at their new cancer center on the other side of town so I can ask to meet with one of their doctors to see what he thinks.

    Again thank you all so much! Keep it coming though because I still have a lot to learn here.

    Wayne
  • Kongo
    Kongo Member Posts: 1,166 Member
    wboaz said:

    Thanks to all who have replied
    You have certainly given me a lot more to go on! I will contact the Providence medical center tomorrow as they do all of the procedures mentioned above. I had my IMRT with them for my neck and although it was very painful I am alive now when I certainly would have been dead within a year. They have a Cyberknife at their new cancer center on the other side of town so I can ask to meet with one of their doctors to see what he thinks.

    Again thank you all so much! Keep it coming though because I still have a lot to learn here.

    Wayne

    Neck
    Wayne, I'm not knowledgable enough about the neck and IMRT but from all the reports I've read and the experiences that have been shared by other in this forum I can't recall anyone complaining about severe pain in conjunction with IMRT treatment for the prostate. I have read that some men complain of slight feelings of fatigue that bring on an afternoon nap (not a bad thing in my opinion), or slight feelings of urinary urgency in later stages of the treatment which is usually addressed with ibuprophen in minor cases or perhaps Flomax. Other than that, the many sessions are just kind of a hassle. CK pretty much eliminates the hassle part although I have read that some men are a little tired after treatment and need to rest more. Some men after CK also report a sense of urgency in urination which is pretty much resolved as with IMRT. If you have a center that offers both IMRT and CK, I'm sure the medical directors can give you a good overview of which would be best for your situation.
  • MCinNC
    MCinNC Member Posts: 40 Member
    Kongo said:

    Choices
    Wayne:

    Many would say that AS certainly is a viable course of action in your case of low risk cancer which could very well be considerd indolent. Another statistic you may want to look at is the PSA density which is a measure of PSA divided by prostate volume. They should have calculated your prostate volume when they did the autopsy. A PSA density less than 0.15, as I recall, is a strong indicator of indolent cancer.

    The only thing about someone on AS at your age is that since prostate cancer in an inherently metatastic disease, given enough time it will grow and spread, even if slowly. Given the long life expectancy you have you need to carefully weigh the potential risks associated with waiting for treatment. Most indicators are that if you are diligent with your AS you can detect a change early enough to seek treatment without risk. There is the anxiety issue, but frankly, I think if you are well educated on the prospects of continued cancer growth after any treatment, you are never going to be completely free from anxiety.

    Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early. Only time will tell.

    As Swing indicated, CyberKnife is an emerging treatment some of us have chosen that has early indications of long term cancer free survival with minimum side effects for urinary discomfort, rectal issues, and erectile function preservation. Of course, there are also some who develop side effects and you already know how it feels to be on the losing end of long odds. HDR Brachytherapy, is a more established treatment that has the best results with long term (>10 year) sustaining data. CyberKnife mimics HDR Brachytherapy in its dosage application and the success and side effect curves perfectly match those of HDR brachytherapy for as long as there is CK data...about 4.5 years in the oldest cases. In addition to CyberKnife, SBRT is also administered by other systems such as the Varian RapidArc system.

    Besides CK, IMRT which you already seem to have some degree of aprehension about, is probably the next most used radiation treatment. Although the dosage plans are similar, a big difference between IMRT and CK is that IMRT only adjusts for the position of the prostate on a daily (once a session) basis. CK on the other hand tracks the movement of the prostate in real time and adjusts its position to compensate for frequent prostate movement caused by bladder filling, gas in the colon, or respiratory effects. With its real time adjustment, CK minimizes any radiation to surrounding tissue or organ and thus has a lower incidence of urinary or bowel toxicity.

    Seed implants are quite popular and also effective but have been associated with higher rates of toxicity with the bowel and higher incontinence and ED rates.

    Proton therapy is popular with many although some studies have shown it is no more effective than IMRT and takes about as long to administer.

    Can't help you with who you might consult with in Oregon but I would recommend you take the time to consult with someone who is a specialist in all of the above treatment methodologies to get a first hand perspective of what the doctor who would treat you considers to be the pros and cons.

    I would also consult with surgeons, many of whom will tell you that a very young man such as yourself has a very good statistical probability of full recovery with little side effects.

    Kongo,
    You said: "Had I

    Kongo,

    You said: "Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early."

    What was your thinking, or what kind of calculations were you doing, when drawing a line based on age between AS and CK? I'm dealing with the same issues with a similar PC history as yours and would be very interested in your thought process.

    Thanks.

    Mac
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    Kongo said:

    Two Cents
    Swing, I think you summarized the approach and advantages to CK rather succinctly. One thing I would add is that although the actual radiation in your case was 38 Gy, a relatively low dose, the biological equivalent dose (BED) is much higher because of the ability of the CyberKnife process to deliver SBRT extremely accurately, and many studies have shown that the higher the dosage, the better the treatment is in effectively treating the cancer. The problem before CK is that higher doses of radiation also brought about increased toxicity in urinary and rectal side effects. CK seems to have effectively ameliorated that problem.

    Bdhilton well knows that you were not implying the anecdotal cases you referred to constitute a study. His views in this area are all too familiar to regular readers of this forum and I see little value in plowing again that already torn up field.

    But segueing into the subject of CK studies, there is a new study out which summarizes the latest results of several CK trials in the October issue of Technology in Cancer Research & Treatment. Of note, the CK protocol that Swing and I followed closely matches a study performed by Dr. Katz with over 300 patients at his institution in Florida with the following statistics at a MEDIAN follow up of 30 months: Freedom from PSA relapse: 100%; Grade 3+ late stage urinary or bowel toxicity: 0%. Erectile function preservation rate: 87%.
    http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

    By any measure those are encouraging statistics. Other multi-institution studies (of which I am part) are underway and my doctor indicated to me that the early results are tracking in line with the Katz statistics indicated above.

    Regardless of individual opinions, men who elect to be treated with CK certainly have none of the near term recovery issues associated with surgery. Whether or not our early results hold true over the very long term obviously remains to be seen, but all of the indications are that CK will be a very effective treatment for men with low risk cancer.

    Interesting Paper
    Kongo: You're much more plugged into the technical and scientific data on CK than I am.

    I chose CK based more on the anecdotal evidence and general reports that I read on the various treatments available than I did on scientific data or studies. However, the article you cited, which apparently summarizes all of the available studies on the effectiveness of CK to date, supports the conclusion that CK is the best available treatment for men w/early stage PCa. The data speaks for itself and there is no need to respond further to BD.

    I meant to comment on the increased efficacy of the CK based on the greater precision of the dose distribution, but I didn't have the language to express that until you mentioned BED (biological equivalent dose) which was discussed at length in Katz's article.

    I received 4 treatments of 9.5 Gy each, every other day, for a total of 38 Gys. This is on the higher end of the CK treatment dosages. Katz suggests that 5 treatments of 7 Gy each for at total of 35 Gy is optimal dosage. However, BED varies widely based on the alpha/beta (a/b) ratio (cell sensitivity to radiation) used. Katz uses an a/b ratio of 1.5 Gy and a BED of 92 Gy in arriving at his conclusion that 35 Gy is the "optimal" dosage. However, a study at U of Maryland that I just found concludes that the a/b ratio of prostate cells is actually 3.1 Gy +/1 0.5 Gy. See: http://www.ncbi.nlm.nih.gov/pubmed/12504054.

    For CK dosages of 38, 36.25 and 35 Gy, respectively, the BED (using a 1.5 Gy a/b ratio) is 125, 96 and 92 Gy BUT, when you use a 3.0 a/b ratio, the BED is 97, 78 and 72 Gy instead. See Table I in Katz's article for the comparative BED data. So, which a/b ratio you use makes a huge difference in computing the BED and I think that the actual BED received is in question. Katz's conclusion that the use of higher dosages over 35 Gy creates greater toxicity risk without significantly greater curative benefit (because "[h]igher doses would be on the flat part of the sigmoid dose response curve (Figure 2) and yield no extra benefit" -- see Katz at page 468) or that "[t]he higher peripheral doses achieved with heterogeneous planning may not be necessary to eradicate prostate cancer cells" (see Katz at page 469) remain to be determined.

    Nevertheless, it seems clear that the higher radiation dosage you receive, the greater the risk of tissue damage and complications caused by radiation toxicity (regardless of the type of radiation treatment received -- be it CK, BT, IMRT or EBRT). The 4 x 9.5 Gy CK treatment that I received was based on heterogeneous planning, "which involves using more beams to achieve a heterogeneous (radiation) dose distribution throughout the prostate, simulating an HDR brachytherapy plan. . . . Urethral doses are also lower with CyberKnife heterogeneous treatment than with HDR, suggesting an advantage in minimizing urethral complications. The number of beams necessary to accomplish heterogeneous treatment is 230-318 which leads to longer treatment times of approximately 90 minutes." See, Katz at pg 468. My treatments lasted about 90 minutes, which confirms the use of heterogeneous planning. I also received my 4 treatments every other day (instead of daily), which in the King study (discussed by Katz at pg 466) apparently reduced the incidence of urinary and rectal complications.

    So, despite getting a higher radiation dosage, hopefully the mitigating effects of heterogeneous dose distribution and the every other day treatment schedule will mitigate the higher toxicity risks in my case.

    Time will tell.

    BTW, Kongo: What method of planning and dose distribution did you receive? -- homogeneous or heterogeneous and 7 or 7.25 Gy?
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    MCinNC said:

    Kongo,
    You said: "Had I

    Kongo,

    You said: "Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early."

    What was your thinking, or what kind of calculations were you doing, when drawing a line based on age between AS and CK? I'm dealing with the same issues with a similar PC history as yours and would be very interested in your thought process.

    Thanks.

    Mac

    You Asked Kongo But . . .
    I know you directed this to Kongo, but I made the same choice he made. I am also believe that I'm the same age and had similar PCa stats -- age 59, Stage T1c, Gleason 6 and PSA less than 10.

    It will be interesting to see what Kongo says, but in my case I chose CK over AS based on simple family actuarial data. I'm 59. My mother is 96 and still alive. My father died "early" at 89 due to emphysema caused by heavy smoking when he was younger; he probably would have lived longer if he never smoked or just smoked less. Based on this, I calculate that I have a life expectancy of at least 30 years. That's a LONG time.

    So, even if I was 65, I would still have chosen CK over AS, especially given the fact that the short term side effects of CK are reportedly minimal and the longer term effectiveness of CK is as good as BT and surgery, which both unquestionably pose greater quality of life risks. BT less so than surgery, but BT has it's own side effects and complication risks that I would rather avoid, if given the choice.
  • MCinNC
    MCinNC Member Posts: 40 Member

    You Asked Kongo But . . .
    I know you directed this to Kongo, but I made the same choice he made. I am also believe that I'm the same age and had similar PCa stats -- age 59, Stage T1c, Gleason 6 and PSA less than 10.

    It will be interesting to see what Kongo says, but in my case I chose CK over AS based on simple family actuarial data. I'm 59. My mother is 96 and still alive. My father died "early" at 89 due to emphysema caused by heavy smoking when he was younger; he probably would have lived longer if he never smoked or just smoked less. Based on this, I calculate that I have a life expectancy of at least 30 years. That's a LONG time.

    So, even if I was 65, I would still have chosen CK over AS, especially given the fact that the short term side effects of CK are reportedly minimal and the longer term effectiveness of CK is as good as BT and surgery, which both unquestionably pose greater quality of life risks. BT less so than surgery, but BT has it's own side effects and complication risks that I would rather avoid, if given the choice.

    Please jump in...
    Thanks for your comment. I'm 56, shooting for 86, with T1c, Gleason 6, 2.4 PSA, 1 of 12 cores positive - so I understand the thinking.

    I guess the follow up is whether you considered doing AS for the short term? Say, monitor things for 5 years if the disease doesn't show signs of progressing... To let more CK data come available for example, or to postpone potential side effects, etc.? Or, was there some thinking that your best chance for that longevity your're seeking is immediate primary treatment, and to wait may lessen the chance of success?

    Mac
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    MCinNC said:

    Please jump in...
    Thanks for your comment. I'm 56, shooting for 86, with T1c, Gleason 6, 2.4 PSA, 1 of 12 cores positive - so I understand the thinking.

    I guess the follow up is whether you considered doing AS for the short term? Say, monitor things for 5 years if the disease doesn't show signs of progressing... To let more CK data come available for example, or to postpone potential side effects, etc.? Or, was there some thinking that your best chance for that longevity your're seeking is immediate primary treatment, and to wait may lessen the chance of success?

    Mac

    Why Wait, IF
    I thought about doing AS for a short time but, after finding CK, my only thought was: Why wait?

    Based on what I was told, the morbidity risk for AS vs. treatment was the same 5 years out. So, as long as the cost and the side effects are minimal, there's nothing lose if you get treatment (since you statistically have the same risk of dying w/in the 1st 5 years anyway) BUT there's a HUGE gain if the treatment is actually effective in eliminating the cancer because there is no further chance (or at least much less of a chance) of continued cancer growth and greater potential longevity beyond 5 years.

    Remember that if you choose AS, the cancer is not going anywhere. If you're lucky, the cancer will be relatively stable (as indicated by your PSA) and you won't need to do anything right away BUT, as has been reported here and elsewhere, the velocity of the PSA readings can rise dramatically in a very short period of time AND, even when you have a low PSA, biopsies have shown a much wider spread of the cancer than was indicated by the PSA readings. So, the longer you wait, the more likely it may be that you'll have a more serious cancer than indicated by the PSA readings and you may be forced into making a very quick decision to accept a much riskier form of treatment -- most likely surgery -- than you would if you treated the cancer earlier, which can have huge negative consequences for your quality of life or, even worse you may be in a situation where the cancer has spread so far that no form of treatment other hormone therapy, chemotherapy and/or EBRT would be of any use.

    FWIW, this is why I think many men w/early stage PCa choose surgery as their FIRST option. They just want the out of their bodies as fast as possible, because they can't (or don't want to) deal with the fact that the cancer is there. However, this choice creates serious quality of life issues -- incontinence (requiring the use of catheters in the short term and diapers in the long term and possibly a urinary sphincter transplant in the end), ED (no woody typically for a year or more and possibly a penile implant in the end) and the shortened of your penis length due to the gap created by the removal of the prostate (urologists insist that the penis is not shorter; it's not but it "looks" shorter and that's all that really matters). There are also the basic surgical risks if the surgeon "accidentally" punctures your rectum (which shares a thin tissue wall w/the prostate), excessive bleeding which is potentially life threatening if the bleeding is not stopped quick enough or permanent ED (if all of the nerves are removed and not spared), just to mention a few possible malpractice issues.

    IMHO, BT is not much better than surgery. Who wants 80-100 radioactive seeds placed in their body? The 1/2 life of the radiation is a year and you have to be careful not to hold kids in your lap or get too close to pregnant women. You also need a special ID to board airplanes w/o getting stopped or arrested due to the radiation and metal in your body. Like surgery, the success of BT and the quality of life after treatment, depends on the skill of the people planning the distribution of radioactive seeds in your prostate. If the wrong dosage is placed in the wrong place, you can have many of the same urinary, rectal and sexual problems as can arise from surgery. The probabilities of problems w/BT are less than w/surgery, but the risks exist nonetheless.

    Surgery and BT were the only choices presented to me by my urologist at Kaiser SF. Didn't like those choices AT ALL, which led me on my search for other treatment methods. If the choice was only AS vs. surgery or BT, I would still be doing AS now. Fortunately, I found CK at UCSF and was able to make the decision to go forward with treatment by changing from Kaiser to Blue Shield which now pays for the treatment (even though it refused to pay for it in the past).

    I still have to get PSA tests every 3 months following treatment (for the 1st year; every 6 months thereafter) and there will still be some uncertainty that I'll have to live w/about the course of the disease for at least a couple of years -- just as there would be w/AS -- but at least I've done something about the cancer that hasn't totally f*cked up my body (like surgery certainly would have done in the short, if not the long, term) and I have a chance of walking away from this disease with minimal side effects after 2 years with only a minor risk (as reported so far) of significant negative side effects.

    So, IMHO, if you're a candidate for CK and your insurance carrier will pay for it (or if you have enough $ to pay for it on your own, there really is no reason to wait.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    My viewpoint
    You have been diagnosed with early stage, low risk category of prostate cancer.....as a lay person who had been diagnosed with early stage prostate cancer one and half years ago ago, and had studied the treatment options of this disease, it is my opinion that you are an excellent candidate of success for virtually every treatment option.....all the docs in the different speicialties want you. Additionally the posters at this thread who have have various treatments that they feel were successful are touting these treatments..you have to read between the lines since in my opinion some of their choices have not been the best.

    I personally have choosen active surveillance.....I feel that it's best for me since there is a very good possiblity that I have indolent cancer, not likely to spread and I may die with the disease, not because of it; additionally if my cancer does progress I feel that I will have enough time to take immediate action for a different treatment choice....I m not interested in overtreating my cancer, and hopefully in the future there is a possiblity that a better cure may come about.

    Currently I enjoy an excellent quality of life with no side effects which one may have with another treatment option..............I feel that there is no reason to rush into a treatment that has a good chance of side effects.

    Kongo recommended a book "Invasion of the Prostate Snatchers" , so far I have read about half of the book........and I agree with the first seven chapters of the book, which I personally experienced .

    Basically this is your choice....do your research.........there is no rush.

    Good luck
    +
  • Kongo
    Kongo Member Posts: 1,166 Member

    Interesting Paper
    Kongo: You're much more plugged into the technical and scientific data on CK than I am.

    I chose CK based more on the anecdotal evidence and general reports that I read on the various treatments available than I did on scientific data or studies. However, the article you cited, which apparently summarizes all of the available studies on the effectiveness of CK to date, supports the conclusion that CK is the best available treatment for men w/early stage PCa. The data speaks for itself and there is no need to respond further to BD.

    I meant to comment on the increased efficacy of the CK based on the greater precision of the dose distribution, but I didn't have the language to express that until you mentioned BED (biological equivalent dose) which was discussed at length in Katz's article.

    I received 4 treatments of 9.5 Gy each, every other day, for a total of 38 Gys. This is on the higher end of the CK treatment dosages. Katz suggests that 5 treatments of 7 Gy each for at total of 35 Gy is optimal dosage. However, BED varies widely based on the alpha/beta (a/b) ratio (cell sensitivity to radiation) used. Katz uses an a/b ratio of 1.5 Gy and a BED of 92 Gy in arriving at his conclusion that 35 Gy is the "optimal" dosage. However, a study at U of Maryland that I just found concludes that the a/b ratio of prostate cells is actually 3.1 Gy +/1 0.5 Gy. See: http://www.ncbi.nlm.nih.gov/pubmed/12504054.

    For CK dosages of 38, 36.25 and 35 Gy, respectively, the BED (using a 1.5 Gy a/b ratio) is 125, 96 and 92 Gy BUT, when you use a 3.0 a/b ratio, the BED is 97, 78 and 72 Gy instead. See Table I in Katz's article for the comparative BED data. So, which a/b ratio you use makes a huge difference in computing the BED and I think that the actual BED received is in question. Katz's conclusion that the use of higher dosages over 35 Gy creates greater toxicity risk without significantly greater curative benefit (because "[h]igher doses would be on the flat part of the sigmoid dose response curve (Figure 2) and yield no extra benefit" -- see Katz at page 468) or that "[t]he higher peripheral doses achieved with heterogeneous planning may not be necessary to eradicate prostate cancer cells" (see Katz at page 469) remain to be determined.

    Nevertheless, it seems clear that the higher radiation dosage you receive, the greater the risk of tissue damage and complications caused by radiation toxicity (regardless of the type of radiation treatment received -- be it CK, BT, IMRT or EBRT). The 4 x 9.5 Gy CK treatment that I received was based on heterogeneous planning, "which involves using more beams to achieve a heterogeneous (radiation) dose distribution throughout the prostate, simulating an HDR brachytherapy plan. . . . Urethral doses are also lower with CyberKnife heterogeneous treatment than with HDR, suggesting an advantage in minimizing urethral complications. The number of beams necessary to accomplish heterogeneous treatment is 230-318 which leads to longer treatment times of approximately 90 minutes." See, Katz at pg 468. My treatments lasted about 90 minutes, which confirms the use of heterogeneous planning. I also received my 4 treatments every other day (instead of daily), which in the King study (discussed by Katz at pg 466) apparently reduced the incidence of urinary and rectal complications.

    So, despite getting a higher radiation dosage, hopefully the mitigating effects of heterogeneous dose distribution and the every other day treatment schedule will mitigate the higher toxicity risks in my case.

    Time will tell.

    BTW, Kongo: What method of planning and dose distribution did you receive? -- homogeneous or heterogeneous and 7 or 7.25 Gy?

    Swing
    It sure sounds like you have a pretty good grasp of the technical details. Frankly, whenever the papers start delving into the alpa/beta ratios, variations in dosage compared to optimal and so forth, my eyes start to glaze over and I have to reread those sections sometimes several times before I really get what they're saying. Sometimes, I never get it as it's been quite a few years since my nuclear physics classes from my undergraduate days at Purdue...and I didn't take THAT many of them.

    Also, in response to your question I'm embarrased to say that I don't recall my method and dose distribution and I'm traveling and away from my files until next Friday when I have my three month follow-up. I'm pretty sure I hade 7.25 Gy over five fractions but am drawing a complete blank on homogeneous or heterogeneous.
  • Kongo
    Kongo Member Posts: 1,166 Member
    MCinNC said:

    Kongo,
    You said: "Had I

    Kongo,

    You said: "Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early."

    What was your thinking, or what kind of calculations were you doing, when drawing a line based on age between AS and CK? I'm dealing with the same issues with a similar PC history as yours and would be very interested in your thought process.

    Thanks.

    Mac

    Mac
    Mac,

    Your posts always impress me with your insightful questions and your ability to cut straight to the chase.

    Swing has it pretty straight in his mind about the reasons he chose CK. He did a lot of research, compared the pros and cons, and went with the option that today seems to offer the best chance for a cure with the lowest likelihood of adverse side effects. While many may not agree, he made his decision based on information and comparison. I agree with him. We both had very similar pathologies and had he been in a more enlightened insurance plan initially, we probably would have been receiving treatment at the same time. As it was, his time schedule is about three months after mine.

    In my own case, the decision process was a bit more nuanced. I was never bound by insurance constraints. As a retired veteran, I could pretty much do anything I wanted with full coverage. I was also fortunate in that I could have paid my own way had I sought a treatment like HIFU which is not presently offered in the United States or some other treatment not covered by my Tricare plan. I consider myself lucky that my decisions were not constrained by insurance or finances and I have enormous empathy for men who end up only with the treatment choices offered by their HMO.

    I did quite a bit of research and personally met with six specialists. I also did some phone interviews and email correspondence with authors of some of the books I read. By the time I chose my treatment I think I had read more than a dozen books and probably close to 100 papers and thousands of postings on various forums. My wife accused me of trying to outsmart the doctors. In my own mind, I kept thinking that if only I did enough research I would find the perfect solution for my situation. One thing always in my mind then was that once you pick a choice (except for perhaps AS), you’re follow on options become more limited and the risk of side effects increase significantly. So, I knew it was critically important to choose carefully.

    On top of all the technical factors, there are the “other influencers” that worm their way into the decision making process. Although my spouse was entirely supportive in whatever I would have chosen to do, she applied subtle pressure to “DO SOMETHING! YOU HAVE CANCER!” Friends and colleagues who I shared my story with also felt that I had to do SOMETHING. Ironically, none of these influencers really knew then or know much now about prostate cancer. To them, cancer is cancer is cancer. Those of us who have gone through this know there is no such thing…all cancer is different.

    Ira (who posted in this thread) was a major influence on me as I considered AS. I have had the pleasure of meeting Ira in person and I am always impressed at the diligent approach he has taken to manage his surveillance while continuing to investigate potential treatment options. I agree with almost everything Ira says about AS and the book he mentioned “Invasion of the Prostate Snatchers” is one I wish I had read before I made a decision but it probably would not have swayed me not to pursue the course I did. Another book that influenced me greatly was “The Big Scare: The Business of Prostate Cancer” by Dr. Anthony Horan. I spoke briefly with Dr. Horan and emailed him during my research phase.

    At the end of the day the non-technical factors probably had more sway in my decision than the technical. I am still very active at work with a challenging career that keeps me on the road frequently. With our children successfully launched, my wife and I are also traveling more together both domestically and overseas and enjoying the fruits of our labors. My initial diagnosis came at a very inconvenient time for me and frankly, I didn’t want that to happen again. I didn't want to be in the midst of some big project at work or planning an overseas trip or something with my wife and have a new test throw a kink in the works. I also felt that as a relatively young man at 59, I could look forward to another 20-25 years of active lifestyle and didn’t want to risk that by being surprised by an AS speed bump. I believe that this cancer will continue to grow (even thought it may be very slow) even after treatment and I don’t think any treatment will get it all. If that is true, then what we are really doing when we seek treatment is to try to set the clock back far enough so that something else kills us. I call it “cure by bus.” If we get hit by a bus sometime after treatment when we dodder across the street in our old age, then we will find ourselves cured by the bus…not by the treatment because something other than PCa killed us.

    So, I hedged my bets and went with a treatment that I researched thoroughly and felt had a better chance of “cure” than any other but also had the advantage of having minimal side effects for most men. Quality of life was more important to me than quantity so I thought I could split the difference between AS and a more traditional treatment with CK. I frequently second guess my choices but have no regrets. I’m confident I chose the best treatment for me (and it’s all relative to our personal situations) and am now moving on with the rest of my life.

    Hope this rather long and rambling response to your question is of some value to you as you wrestle with your choice. Being as young as you are and given the histology of prostate cancer, I think the odds are pretty strong that at some point in the future you will likely have to deal with it. If you go AS the research suggests that you can do that in most cases without limiting your follow-on choices. But only you can reconcile the odds in your own life.

    Good luck
  • Kongo
    Kongo Member Posts: 1,166 Member

    My viewpoint
    You have been diagnosed with early stage, low risk category of prostate cancer.....as a lay person who had been diagnosed with early stage prostate cancer one and half years ago ago, and had studied the treatment options of this disease, it is my opinion that you are an excellent candidate of success for virtually every treatment option.....all the docs in the different speicialties want you. Additionally the posters at this thread who have have various treatments that they feel were successful are touting these treatments..you have to read between the lines since in my opinion some of their choices have not been the best.

    I personally have choosen active surveillance.....I feel that it's best for me since there is a very good possiblity that I have indolent cancer, not likely to spread and I may die with the disease, not because of it; additionally if my cancer does progress I feel that I will have enough time to take immediate action for a different treatment choice....I m not interested in overtreating my cancer, and hopefully in the future there is a possiblity that a better cure may come about.

    Currently I enjoy an excellent quality of life with no side effects which one may have with another treatment option..............I feel that there is no reason to rush into a treatment that has a good chance of side effects.

    Kongo recommended a book "Invasion of the Prostate Snatchers" , so far I have read about half of the book........and I agree with the first seven chapters of the book, which I personally experienced .

    Basically this is your choice....do your research.........there is no rush.

    Good luck
    +

    :P.S.
    As usual, Ira makes very good points and two of them in particular are quite relevant to Mac's situation, in my opinion.

    First, each specialist will most often spin their treatment specialty. I was lucky enough to find one (my CK doctor) who didn't do that but I think he is pretty rare. Most of these doctors are very persusive and confident in their recommendations and after all, they're DOCTORS and we have been brought up to trust our doctors. One of the hardest things in the PCa merry-go-round is learning to view all the advice you get with a high degree of suspicion and ask direct, pointed questions. We can only do that if we have done our homework BEFORE we meet with them and for most of us, we get the diagnosis and are immediately thrown in to follow up discussions with specialists without even the vaguest idea of where the prostate is even located, what it does, and what any of the statistics they throw at us actually mean.

    The other point Ira makes is that with the conditions you describe, you have plenty of time to make a very deliberate and considered decision. There is no urgency in your case. I would get a second opinion on the biopsy if you haven't done it already, get your PSA tested every three months while you ponder your options, and make lifestyle changes that can help lower your PSA such as eliminating dairy, increasing your exercise, and cutting way back on red meat.