To IMRT or not IMRT

hochbob
hochbob Member Posts: 10
edited March 2014 in Prostate Cancer #1
My Brothers,
While I have just joined this site and am grateful to have found it, I am no stranger to prostate cancer. I would sincerely appreciate any input regarding my situation, but first, my history.
PSA of 4.1 led to RP six years ago at age 57; T1C; Gleason 3+3=6; seminal vesicles, vasa, apex, and base all free of involvement; margins and lymph nodes (5) negative; AJCC pathologic stage T2, NO, MX.
PSA of .42 3 months ago; PSA of .85 1 month ago; CT and bone scans both negative; referred to radiation oncologist for possible IMRT.
I continue to read all I can find regarding my history and so far have discovered the following:
• 25-40% of men who have a RP will have a biochemical failure/recurrence.
• IMRT should be considered for all with biochemical failure especially those with positive margins.
• Only half of patients treated with SRT have a long term PSA response to SRT.
• One study says that 60% of patients will have an undetectable PSA post SRT.
• SRT initiated more than two years after recurrence provided no significant increase in prostate specific survival.
• Patients with positive surgical margins are more likely to benefit from SRT.
• PSA doubling time is significantly associated with CSS, however, the risk of dying is not fully explained by PSADT.
• According to the Sloan Kettering nomogram predicting response to SRT, I have 1 chance in 3 of being progression free after 6 years.
Given the above, I am struggling with moving forward with SRT. It is aggressive, expensive (I have a high deductible insurance plan), not without significant risk of both incontinence and impotence (I have neither), and it is without a proven survival benefit. Yes, I can choose to zap my prostate bed and pelvis with 37 blasts of radiation, however, the question is should I. I must also add that while my oncologist (MD/PhD) might be brilliant, he has absolutely no personality and spent the better part of my consult trying to “sell” me on going forward to the point of asking me to sign a document to begin treatment. He was taken aback when I said I wanted to think about it. I realize health care is a business and I have enormous respect for the medical profession, however, I wonder what would happen to these guys if we found a cure for cancer?
If you would share your experience and thoughts, I would be extremely grateful.
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Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    Tough Decisions
    Hochbob,

    So sorry that you're having to go through this whole process all over again after your RP six years ago. As you know from the PSA doubling time associated with your recent rise in PSA it is likely that your cancer is back and growing fairly rapidly.

    I had an almost identical pathology and after reading the same statistics you have cited, I chose to have radiation as a first choice treatment because of the nearly identical long term survival statistics with RP. I chose CyberKnife but I don't believe that is an appropriate follow-on treatment following cancer recurrance following RP.

    I too would be hesitant to go forward with another treatment that may increase the side effects of ED and incontinence which you seem to have avoided to date without an optimistic long term prognosis in terms of long term survival. The other thing you have to weigh is your personal choice regarding quality of life over quantity of life. To me, quality trumps quality every time, but that's an intensely personal decision and I know other men who regularly post on this forum would take an opposite view.

    The first thing I would do is consult with some other doctors who not only might have a more agreeable personality but may have different options that you would be more comfortable with.

    I believe there are some advanced CT scans / MRI technologies that may be able to better pinpoint the location of your cancer today and that might be a tool that could help you better gauge the liklihood of success.

    As you know, once the prostate is removed the return of detectable PSA readings is pretty conclusive for PCa but I have read recently that there are other sources of PSA and that even some women have had a detectable PSA reading.

    In the absence of any better tool, the trend in PSA readings following treatment is about the only measure of the efficacy of treatment. Although I am not proposing that you abandon your radiologist/oncologist team, I believe there is a growing body of evidence that diet can dramatically affect PSA. Also, statins (like Crestor) also tend to lower PSA. In my own case, I eliminated all dairy products (everything from milk including butters, cheeses, milks, yougurts, ice cream, and so on) and replaced it with a diet of soy products and rice milk. My PSA dropped from 4.3 at diagnosis in March 2010 to 2.8 prior to treatment in June. Unlike saw palmetto and other supplements, the elimination of dairy does not mask PSA...it seems to lower it by removing the IGF (insulin growth factors) which seem to be like candy to cancer. I know of many other antecdotal cases where a complete elimination of dairy has had similar effects on both prostate and breast cancer and you might wish to read some of Professor Jane Plant's books on the subject. Although there are no large studies that I am aware of that compares non dairy users in the West with dairy users for prostate cancer, there are some compelling individual stories. (Although I am sure the American Dairy Industry would dispute this strongly). As you may know, the rate of PCa in rural areas of China that have no dairy in the diet is about 1 in 100,000 versus about 1 in 6 in the West where dairy how comprises about 40% of our diet. While researching other potential alternatives, I would try eliminating dairy...it can't hurt and might stabilize or reverse your PSA readings.

    In any event, best of luck as you deal with this dilemma.
  • hochbob
    hochbob Member Posts: 10
    Kongo said:

    Tough Decisions
    Hochbob,

    So sorry that you're having to go through this whole process all over again after your RP six years ago. As you know from the PSA doubling time associated with your recent rise in PSA it is likely that your cancer is back and growing fairly rapidly.

    I had an almost identical pathology and after reading the same statistics you have cited, I chose to have radiation as a first choice treatment because of the nearly identical long term survival statistics with RP. I chose CyberKnife but I don't believe that is an appropriate follow-on treatment following cancer recurrance following RP.

    I too would be hesitant to go forward with another treatment that may increase the side effects of ED and incontinence which you seem to have avoided to date without an optimistic long term prognosis in terms of long term survival. The other thing you have to weigh is your personal choice regarding quality of life over quantity of life. To me, quality trumps quality every time, but that's an intensely personal decision and I know other men who regularly post on this forum would take an opposite view.

    The first thing I would do is consult with some other doctors who not only might have a more agreeable personality but may have different options that you would be more comfortable with.

    I believe there are some advanced CT scans / MRI technologies that may be able to better pinpoint the location of your cancer today and that might be a tool that could help you better gauge the liklihood of success.

    As you know, once the prostate is removed the return of detectable PSA readings is pretty conclusive for PCa but I have read recently that there are other sources of PSA and that even some women have had a detectable PSA reading.

    In the absence of any better tool, the trend in PSA readings following treatment is about the only measure of the efficacy of treatment. Although I am not proposing that you abandon your radiologist/oncologist team, I believe there is a growing body of evidence that diet can dramatically affect PSA. Also, statins (like Crestor) also tend to lower PSA. In my own case, I eliminated all dairy products (everything from milk including butters, cheeses, milks, yougurts, ice cream, and so on) and replaced it with a diet of soy products and rice milk. My PSA dropped from 4.3 at diagnosis in March 2010 to 2.8 prior to treatment in June. Unlike saw palmetto and other supplements, the elimination of dairy does not mask PSA...it seems to lower it by removing the IGF (insulin growth factors) which seem to be like candy to cancer. I know of many other antecdotal cases where a complete elimination of dairy has had similar effects on both prostate and breast cancer and you might wish to read some of Professor Jane Plant's books on the subject. Although there are no large studies that I am aware of that compares non dairy users in the West with dairy users for prostate cancer, there are some compelling individual stories. (Although I am sure the American Dairy Industry would dispute this strongly). As you may know, the rate of PCa in rural areas of China that have no dairy in the diet is about 1 in 100,000 versus about 1 in 6 in the West where dairy how comprises about 40% of our diet. While researching other potential alternatives, I would try eliminating dairy...it can't hurt and might stabilize or reverse your PSA readings.

    In any event, best of luck as you deal with this dilemma.

    Thanks So Very Much
    Kongo,

    I sincerely appreciate your prompt and thorough response. Everything you say makes a lot of sense. You have armed me with additional questions for my physicians. I will get results from a 3rd. PSA tomorrow and will keep you posted.
  • ezra99
    ezra99 Member Posts: 18
    SRT

    I'm kind of in same situation. I've been told that if I do SRT it will be about a 1 out of 3 chance of being progression free after 6 years. They claim I can increase my chances to about 1 out of 2 if I do ADT for 2 months prior to SRT, 2 months during and 2 months after. Guess it would be a 3 month injection two months before starting and a second injection half way through. I'm trying to make an informed decision on what to do. My last PSA was .38 with doubling rate of 18.5 months so they say I have a little time to decide. I'm leaning toward just SRT but haven't really made up my mind. Are you considering ADT with SRT?

    Thanks for information on your post. I have been lucky to have a set of 3 MD's that are all very personable and not pressuring me to make a decision before I'm ready.
  • mrspjd
    mrspjd Member Posts: 694 Member
    hochbob said:

    Thanks So Very Much
    Kongo,

    I sincerely appreciate your prompt and thorough response. Everything you say makes a lot of sense. You have armed me with additional questions for my physicians. I will get results from a 3rd. PSA tomorrow and will keep you posted.

    not from a "brother"
    hochbob
    You've probably already read this article on whether to do SRT after RP, but in case you haven't, here is the link (It's from a well respected nationally known open RP doctor and has some good info):
    http://www.drcatalona.com/quest/quest_winter08_2.htm

    Certainly there are quality of life issues in your choices, but just curious and wondering if I might ask--if you decide not to do IM/IGRT w/ or w/o hormones, what options are you considering, if any--will you do nothing as far as tx now or consider chemo later or ?
    mrs pjd
  • hochbob
    hochbob Member Posts: 10
    mrspjd said:

    not from a "brother"
    hochbob
    You've probably already read this article on whether to do SRT after RP, but in case you haven't, here is the link (It's from a well respected nationally known open RP doctor and has some good info):
    http://www.drcatalona.com/quest/quest_winter08_2.htm

    Certainly there are quality of life issues in your choices, but just curious and wondering if I might ask--if you decide not to do IM/IGRT w/ or w/o hormones, what options are you considering, if any--will you do nothing as far as tx now or consider chemo later or ?
    mrs pjd

    Sorry "Sister"
    I did not mean to offend or exclude you by reaching out to my "brothers". I had not read the Catalona article which is very relevant to my situation. Thanks for posting the link. Still, because of my minimal adverse pathology and the thought that those with more aggressive factors seem to benefit most, I am not yet convinced that the "benefits" of IMRT outweigh the risks. I should have the results of my 3rd. PSA tomorrow. Don't know if this will move me to treatment, however, IMRT would be that treatment as I don't believe that my disease, at this point, is aggressive enough for hormone therapy.

    Thanks.
  • BRONX52
    BRONX52 Member Posts: 156
    HOCHBOB
    DON'T KNOW IF THIS WILL HELP YOU BUT MY JOURNEY WITH PC TOOK ME THROUGH A RP AND ADJUVANT RADIATION THERAPY. AT THE TIME OF SURGERY MY PSA WAS 5.1 AND I WAS STAGED AS T1C WITH A GLEASON 7 (3+4). AFTER SURGERY HOWEVER, I WAS STAGED AT T3A WITH A GLEASON 7 (3+4), POSITIVE MARGIN AND EXTRAPROSTATIC EXTENSION.LYMPH NODES AND SEMINAL VESICLES WERE NOT INVOLVED. MY PROSTATE TURNED OUT TO BE 75% INVOLVED. THAT'S A FAR CRY FROM THE CLINICAL STAGING AND BIOPSY WHICH SHOWED VERY LITTLE CANCER IN 2 OUT OF 10 CORES TAKEN!! I GUESS THEY JUST TOOK SAMPLES FROM GOOD AREAS ! ANYWAY, AFTER SEVERAL CONSULTS I CHOSE TO HAVE ADJUVANT RADIATION EVEN THOUGH MY PSA AT 6 WEEKS WAS UNDETECTABLE.I JUST WANTED TO DO EVERTHING POSSIBLE AS SOON AS POSSIBLE TO ZAP THE CANCER. I CHOSE NOT TO HAVE HORMONE THERAPY IN CONJUNCTION WITH THE RADIATION. ALTHOUGH HORMONE THERAPY CAN SHRINK TUMORS AND SLOW PROGRESSION IT DOES NOT KILL CANCER CELLS AND SOME CANCER CELLS ARE IMMUNE TO THE HORMONES ANYWAY. AND THE SIDE EFFECTS OF HORMONE THERAPY DIDN'T PAINT A PRETTY PICTURE FOR ME. THE IMRT WASN'T BAD AS FAR AS SIDE EFFECTS WERE CONCERNED. I WAS CONTINENT BEFORE TREATMENT AND THE SAME AFTER TREATMENT. HAD SOME FREQUENCY AND URGENCY ISSUES TOWARD THE END OF TREATMENT BUT THAT HAS SUBSIDED SINCE I FINISHED 38 SESSIONS THE FIRST WEEK OF JUNE. LONG TERM SIDE EFFECTS ARE POSSIBLE AND I WILL JUST HAVE TO WAIT AND SEE WHAT THE FUTURE HOLDS.AS FAR AS THE DIET IS CONCERNED I BELIEVE THERE IS NOT A CONCENSUS ON THIS EVEN AMONG THE MEDICAL COMMUNITY. BUT AS KONGO SAID, IT CAN'T HURT AND LIMITING YOUR INTAKE OF DAIRY AND RED MEAT CERTAINLY HELPS IN OTHER AREAS BESIDES CANCER. I HAVE ANOTHER PSA IN AUGUST AND I'LL LET YOU KNOW HOW I MAKE OUT. YOU SOUND LIKE YOU ARE DOING ALL OF THE RIGHT THINGS BEFORE MAKING A DECISION THAT IS RIGHT FOR YOU. GOOD LUCK AND I WISH YOU THE BEST----ALOHA, DAN.
  • hochbob
    hochbob Member Posts: 10
    ezra99 said:

    SRT

    I'm kind of in same situation. I've been told that if I do SRT it will be about a 1 out of 3 chance of being progression free after 6 years. They claim I can increase my chances to about 1 out of 2 if I do ADT for 2 months prior to SRT, 2 months during and 2 months after. Guess it would be a 3 month injection two months before starting and a second injection half way through. I'm trying to make an informed decision on what to do. My last PSA was .38 with doubling rate of 18.5 months so they say I have a little time to decide. I'm leaning toward just SRT but haven't really made up my mind. Are you considering ADT with SRT?

    Thanks for information on your post. I have been lucky to have a set of 3 MD's that are all very personable and not pressuring me to make a decision before I'm ready.

    You're In Good Hands
    Ezra,

    If your adverse pathology is minimal like mine, than I would suspect that your PSA doubling rate is driving your physicians to have you consider additional treatment(s). Unlike my rapidly doubling PSA, yours seems to be one that would put you in a "watch and wait" category again assuming minimal pathology. I believe you are in good hands as it appears that your physicians have adopted this strategy and are providing options. Should you decide to move forward with additional treatment, do so with a thorough risk benefit analysis. I am continent and potent which compounds my decision to risk that for an aggressive therapy that at best offers me a 33% chance of being progression free 6 years out. Again, not knowing your history, I'm concerned that concurrent ADT and SRT might be overkill. If and when I go forward, it will be with IMRT only as I don't believe my disease is aggressive enough to warrant ADT, which also, as you know, is not without risk. Treatment wise, I would like to believe that less may be more given our situations. Regretably however, this remains unproven. Thanks for your input. Best of luck and stay in touch.
  • hochbob
    hochbob Member Posts: 10
    BRONX52 said:

    HOCHBOB
    DON'T KNOW IF THIS WILL HELP YOU BUT MY JOURNEY WITH PC TOOK ME THROUGH A RP AND ADJUVANT RADIATION THERAPY. AT THE TIME OF SURGERY MY PSA WAS 5.1 AND I WAS STAGED AS T1C WITH A GLEASON 7 (3+4). AFTER SURGERY HOWEVER, I WAS STAGED AT T3A WITH A GLEASON 7 (3+4), POSITIVE MARGIN AND EXTRAPROSTATIC EXTENSION.LYMPH NODES AND SEMINAL VESICLES WERE NOT INVOLVED. MY PROSTATE TURNED OUT TO BE 75% INVOLVED. THAT'S A FAR CRY FROM THE CLINICAL STAGING AND BIOPSY WHICH SHOWED VERY LITTLE CANCER IN 2 OUT OF 10 CORES TAKEN!! I GUESS THEY JUST TOOK SAMPLES FROM GOOD AREAS ! ANYWAY, AFTER SEVERAL CONSULTS I CHOSE TO HAVE ADJUVANT RADIATION EVEN THOUGH MY PSA AT 6 WEEKS WAS UNDETECTABLE.I JUST WANTED TO DO EVERTHING POSSIBLE AS SOON AS POSSIBLE TO ZAP THE CANCER. I CHOSE NOT TO HAVE HORMONE THERAPY IN CONJUNCTION WITH THE RADIATION. ALTHOUGH HORMONE THERAPY CAN SHRINK TUMORS AND SLOW PROGRESSION IT DOES NOT KILL CANCER CELLS AND SOME CANCER CELLS ARE IMMUNE TO THE HORMONES ANYWAY. AND THE SIDE EFFECTS OF HORMONE THERAPY DIDN'T PAINT A PRETTY PICTURE FOR ME. THE IMRT WASN'T BAD AS FAR AS SIDE EFFECTS WERE CONCERNED. I WAS CONTINENT BEFORE TREATMENT AND THE SAME AFTER TREATMENT. HAD SOME FREQUENCY AND URGENCY ISSUES TOWARD THE END OF TREATMENT BUT THAT HAS SUBSIDED SINCE I FINISHED 38 SESSIONS THE FIRST WEEK OF JUNE. LONG TERM SIDE EFFECTS ARE POSSIBLE AND I WILL JUST HAVE TO WAIT AND SEE WHAT THE FUTURE HOLDS.AS FAR AS THE DIET IS CONCERNED I BELIEVE THERE IS NOT A CONCENSUS ON THIS EVEN AMONG THE MEDICAL COMMUNITY. BUT AS KONGO SAID, IT CAN'T HURT AND LIMITING YOUR INTAKE OF DAIRY AND RED MEAT CERTAINLY HELPS IN OTHER AREAS BESIDES CANCER. I HAVE ANOTHER PSA IN AUGUST AND I'LL LET YOU KNOW HOW I MAKE OUT. YOU SOUND LIKE YOU ARE DOING ALL OF THE RIGHT THINGS BEFORE MAKING A DECISION THAT IS RIGHT FOR YOU. GOOD LUCK AND I WISH YOU THE BEST----ALOHA, DAN.

    Rolling the Dice
    Dan,

    Thanks for increasing my confidence in IMRT. I suspect that I will reluctantly roll the dice and head in that direction. I believe Kongo is on to something, like you say, that may not be totally embraced by the medical community. However, it just makes a lot of sense. Let me know about your next PSA. I am awaiting results of my 3rd. test today. All the best and keep in touch.
  • The Naturalist
    The Naturalist Member Posts: 6
    To IMRT or not IMRT
    Hochbob: First, I take it that you had Radical Prostatectomy 6 years ago. Without trying to analyze the details, I just want to tell you now that many cancer patients today have RP, which is ten followed by IMRT - just to eliminate cancer cells that may have remained after RP, but they are too small and undetectable.

    For the record, I had a PSA 4.1 in 2007, Gleason 3+3, and a biopsy showed 1 of 6 cores was positive - but only 40%. My doctor, and a specialist suggested "watchful waiting," since pelvic and bone scans were clear, an the cancer was microscopic and was contained in the prostate. But I wanted out, and I chose IMRT. 8 weeks by 5 treatments each, 40 X 2 GY =
    80 GY of radiation. All follow ups, the latest in March 2010 good. PSA 0.5 No incontinence,
    no other bowel or rectal irritation, but some sexual dysfunction.

    To IMRT or not to IMRT? Yes, in my opinion. I have a bad opinion about RP, and I have a bad opinion about doctors as well, as most of them try to sell you what they do, urologists
    RP, and oncologists or radiologists IMRT. But after a lot of research, I believe IMRT was better for me because I knew that the center of IMRT is pointed at the prostate area, but a lower portion of radiation also radiated adjacent areas of the prostate, and probably killed microscopic cancer cells that might have been undetected in the CT scan that was clear.
    It is a "GO FOR" from me, and good luck!
  • tarhoosier
    tarhoosier Member Posts: 195
    Bob: Factors in your favor:
    Bob:

    Factors in your favor: G 3+3, several years from surgery before psa rise (suggests local recurrence), health.
    Factors against: cost, likely side effects plus possible side effects, negative margin status (suggests cancer is outside of treatment area), psa is above 0.5 (point of best results), recent rapid psa doubling time.
    Also factor against, IMO, are attitude and practices of doctor.

    I also agree that Avodart, vitamin D, and other low cost efforts could bear fruit.
  • hochbob
    hochbob Member Posts: 10

    To IMRT or not IMRT
    Hochbob: First, I take it that you had Radical Prostatectomy 6 years ago. Without trying to analyze the details, I just want to tell you now that many cancer patients today have RP, which is ten followed by IMRT - just to eliminate cancer cells that may have remained after RP, but they are too small and undetectable.

    For the record, I had a PSA 4.1 in 2007, Gleason 3+3, and a biopsy showed 1 of 6 cores was positive - but only 40%. My doctor, and a specialist suggested "watchful waiting," since pelvic and bone scans were clear, an the cancer was microscopic and was contained in the prostate. But I wanted out, and I chose IMRT. 8 weeks by 5 treatments each, 40 X 2 GY =
    80 GY of radiation. All follow ups, the latest in March 2010 good. PSA 0.5 No incontinence,
    no other bowel or rectal irritation, but some sexual dysfunction.

    To IMRT or not to IMRT? Yes, in my opinion. I have a bad opinion about RP, and I have a bad opinion about doctors as well, as most of them try to sell you what they do, urologists
    RP, and oncologists or radiologists IMRT. But after a lot of research, I believe IMRT was better for me because I knew that the center of IMRT is pointed at the prostate area, but a lower portion of radiation also radiated adjacent areas of the prostate, and probably killed microscopic cancer cells that might have been undetected in the CT scan that was clear.
    It is a "GO FOR" from me, and good luck!

    Psychic Income
    Naturalist,

    Yes, I had my RP 6 years ago. I appreciate the time you took to share your history, however, I'm not sure whether your post RP pathology indicated positive or negative margins. I believe this, as well as, PSA doubling time are the determinants of one's decision to move forward with IMRT, at least in my case. Your decision to receive adjuvant radiation appears to have served you well. With more research, RP and adjuvant radiation may become the standard of care. I also very much appreciate your candor regarding physicians who choose to "sell" what can be done vs. what should be done. Today, the result of my 3rd. PSA was .8...down from .85 three months ago. This result has prompted me to further research other non-CA variables that I can control that may lower my PSA.
    I'm sure the "psychic income" provided by knowing you have done all you can is very comforting. I hope to get there soon. All the best and please keep in touch.
  • The Naturalist
    The Naturalist Member Posts: 6
    hochbob said:

    Psychic Income
    Naturalist,

    Yes, I had my RP 6 years ago. I appreciate the time you took to share your history, however, I'm not sure whether your post RP pathology indicated positive or negative margins. I believe this, as well as, PSA doubling time are the determinants of one's decision to move forward with IMRT, at least in my case. Your decision to receive adjuvant radiation appears to have served you well. With more research, RP and adjuvant radiation may become the standard of care. I also very much appreciate your candor regarding physicians who choose to "sell" what can be done vs. what should be done. Today, the result of my 3rd. PSA was .8...down from .85 three months ago. This result has prompted me to further research other non-CA variables that I can control that may lower my PSA.
    I'm sure the "psychic income" provided by knowing you have done all you can is very comforting. I hope to get there soon. All the best and please keep in touch.

    Hochbob
    I would not see your 3rd PSA change from .85 to .8 as a decrease. I am glad you have a positive attitude, but small fractional numbers may be the result of variation among testing
    laboratories. Also, I have a 86 years old cousin in Michigan whose PSA is 17, and he has no
    prostate cancer. PSA rise with age is normal, and it doesn't indicate cancer. Cancer is indicated in a "sudden rise" in PSA, as it was in my case. It rose from 1.8 to 4.1 in one
    year. My suggestion? Don't worry about small fractional PSA levels.
  • Kongo
    Kongo Member Posts: 1,166 Member
    hochbob said:

    Psychic Income
    Naturalist,

    Yes, I had my RP 6 years ago. I appreciate the time you took to share your history, however, I'm not sure whether your post RP pathology indicated positive or negative margins. I believe this, as well as, PSA doubling time are the determinants of one's decision to move forward with IMRT, at least in my case. Your decision to receive adjuvant radiation appears to have served you well. With more research, RP and adjuvant radiation may become the standard of care. I also very much appreciate your candor regarding physicians who choose to "sell" what can be done vs. what should be done. Today, the result of my 3rd. PSA was .8...down from .85 three months ago. This result has prompted me to further research other non-CA variables that I can control that may lower my PSA.
    I'm sure the "psychic income" provided by knowing you have done all you can is very comforting. I hope to get there soon. All the best and please keep in touch.

    Good News
    Hochbob, I would tend to agree with Naturalist that there isn't much statistical difference between .85 asnd .8 given the variability of the testing process and laboratory technique. The good news is that the PSA isn't continuing to increase which may mean nothing at all (just a random data point that doesn't fit into a long range trend) or it may well mean that the rate of PCa growth is such that it may not be a threat or at least give you some time to ponder alternatives.

    I've often wondered whether the process of RP itself (or even a needle biopsy) might cause the spread of cancer that would otherwise have been contained within the prostate in an indolent form. It seems to me that the state of cancer in your original diagnosis at the time you did RP could very well have been indolent and slow growing and if some cancer cells leaked during the surgical process. It has taken six years for them to show up in a PSA rise. If you had a slow growing, indolent cancer before, maybe it's the same and a watchful waiting approach is appropriate. Of course all of that is pure speculation on my part and I haven't read anything that would shed any light on that one way or the other but it's a question you might want to pose to your doctor.

    Keep us advised as you go forward.
  • hochbob
    hochbob Member Posts: 10
    Kongo said:

    Good News
    Hochbob, I would tend to agree with Naturalist that there isn't much statistical difference between .85 asnd .8 given the variability of the testing process and laboratory technique. The good news is that the PSA isn't continuing to increase which may mean nothing at all (just a random data point that doesn't fit into a long range trend) or it may well mean that the rate of PCa growth is such that it may not be a threat or at least give you some time to ponder alternatives.

    I've often wondered whether the process of RP itself (or even a needle biopsy) might cause the spread of cancer that would otherwise have been contained within the prostate in an indolent form. It seems to me that the state of cancer in your original diagnosis at the time you did RP could very well have been indolent and slow growing and if some cancer cells leaked during the surgical process. It has taken six years for them to show up in a PSA rise. If you had a slow growing, indolent cancer before, maybe it's the same and a watchful waiting approach is appropriate. Of course all of that is pure speculation on my part and I haven't read anything that would shed any light on that one way or the other but it's a question you might want to pose to your doctor.

    Keep us advised as you go forward.

    My Friend
    Kongo,

    I continue to be amazed by and grateful for your tremendous incite into this incidious disease. That you would take time to help me while on a plane is clearly above and beyond. The article you referenced was one I stumbled upon a couple of weeks ago and I must say, it appears to be the definitive publication regarding my dilemma. I will pose your thesis, regarding the spread of cancer, when I meet with my urologist next week.

    Like you, I continue to seek answers that may not exist. Best we can hope for are healthcare professionals who can truly separate what might be best for their patients vs. what might be best for their bank accounts.

    My M.S. in Healthcare Management and long career in the medical device business have armed me with enough clinical and business knowledge to qualify me as a bonefide skeptic.

    Your expertise is greatly appreciated. Stay tuned.
  • The Naturalist
    The Naturalist Member Posts: 6
    Hochbob: Check this out. It may be the answer you look for!
    Hochbob: With an M.S. in Healthcare Management, I suggest you check this one: After I had my IMRT radiation, and my anxiety has been reduced considerably, I was still searching and
    reading any message board I could find online. And one of them, which I did not "save" in my computer, and I cannot find now had this information:

    A prostate diagnosed patient decided to go on a "watchful waiting" period before any treatment. During that time he -somehow- obtained information that "Capsicum" (hot pepper
    powder" sold in tablets online - and almost impossible to find in a local store- were effective in shrinking cancer. He told his doctor that he would take those for 6 months,
    and go in for his next check up. I am not sure, but if memory serves, he was taking 600mg
    4 times a day, before food because with food that stay in the stomach until digestion, it burnt his stomach, but before it passed to the small intestine faster. At 6 months check up,
    the tests came inconclusive - if he had cancer or not! He continued, and at 12 months, no cancer was detected!

    The posting looked like an "old wives tales," but then two doctors posted requests to that man, and posted their e-mails to contact them. The last I remember, he said that he was willing to take Capsicum the rest of his life, rather than go through RP or any traditional therapy. I tried to find that message board for you, but I am running into the selling gamut of websites, and had no luck. But I suggest you look for -under Capsicum and cancer, capsicum sellers and testimonials, etc. You may find something that most people believe do not exist.

    Can something like this exist? Am I an illiterate sucker, or one of those "herbs cure everything" believer? Not, at all! For the record, I am a retired social sciences professor, and I know the medical industry - both medical equipment manufacturers, the pharmaceutical industry, hospitals, and doctors - will not allow hot pepper to wreck their industries. I believe high levels of "Capsicum" may be effective to block cancer cells from replicating, and it may have to be taken for life. I would, therefore, suggest that you pursue this lead, and if you find that source, let us know. Remember: Sometimes something
    comes out of nowhere and change our lives. Take this lead and see. You have got nothing to lose. Just re-direct you search and see if you hit something! Good luck!
  • hochbob
    hochbob Member Posts: 10

    Hochbob: Check this out. It may be the answer you look for!
    Hochbob: With an M.S. in Healthcare Management, I suggest you check this one: After I had my IMRT radiation, and my anxiety has been reduced considerably, I was still searching and
    reading any message board I could find online. And one of them, which I did not "save" in my computer, and I cannot find now had this information:

    A prostate diagnosed patient decided to go on a "watchful waiting" period before any treatment. During that time he -somehow- obtained information that "Capsicum" (hot pepper
    powder" sold in tablets online - and almost impossible to find in a local store- were effective in shrinking cancer. He told his doctor that he would take those for 6 months,
    and go in for his next check up. I am not sure, but if memory serves, he was taking 600mg
    4 times a day, before food because with food that stay in the stomach until digestion, it burnt his stomach, but before it passed to the small intestine faster. At 6 months check up,
    the tests came inconclusive - if he had cancer or not! He continued, and at 12 months, no cancer was detected!

    The posting looked like an "old wives tales," but then two doctors posted requests to that man, and posted their e-mails to contact them. The last I remember, he said that he was willing to take Capsicum the rest of his life, rather than go through RP or any traditional therapy. I tried to find that message board for you, but I am running into the selling gamut of websites, and had no luck. But I suggest you look for -under Capsicum and cancer, capsicum sellers and testimonials, etc. You may find something that most people believe do not exist.

    Can something like this exist? Am I an illiterate sucker, or one of those "herbs cure everything" believer? Not, at all! For the record, I am a retired social sciences professor, and I know the medical industry - both medical equipment manufacturers, the pharmaceutical industry, hospitals, and doctors - will not allow hot pepper to wreck their industries. I believe high levels of "Capsicum" may be effective to block cancer cells from replicating, and it may have to be taken for life. I would, therefore, suggest that you pursue this lead, and if you find that source, let us know. Remember: Sometimes something
    comes out of nowhere and change our lives. Take this lead and see. You have got nothing to lose. Just re-direct you search and see if you hit something! Good luck!

    Very Interesting
    Naturalist,

    I am intrigued by your post and have no doubt that there are non-medically endorsed alternatives to conventional therapy. Your concern for the many "cures" and your expertise in separating fact from fiction means a lot to me. I will certainly research this lead to get a handle on its efficacy. I will report back. Many, many thanks for your efforts on my behalf.
  • mrspjd
    mrspjd Member Posts: 694 Member
    hochbob said:

    Very Interesting
    Naturalist,

    I am intrigued by your post and have no doubt that there are non-medically endorsed alternatives to conventional therapy. Your concern for the many "cures" and your expertise in separating fact from fiction means a lot to me. I will certainly research this lead to get a handle on its efficacy. I will report back. Many, many thanks for your efforts on my behalf.

    capsaicin
    A quick google search produced the following info from the source cited below. Not necessarily the most reliable source, but a good place to start. I have not read the related PCa medical studies cited in the source, but if someone wants to pick up the lead, go for it, as I've posted the links from the source below! btw, this is not an endorsement nor a pan, just trying to keep an open mind, since capsaicin has been in the news recently related to other medical issues.

    source: http://en.wikipedia.org/wiki/Capsaicin
    Capsaicin (pronounced /kæpˈseɪ.ɨsɪn/) (8-methyl-N-vanillyl-6-nonenamide, (CH3)2CHCH=CH(CH2)4CONHCH2C6H3-4-(OH)-3-(OCH3)) is the active component of chili peppers, which are plants belonging to the genus Capsicum. It is an irritant for mammals, including humans, and produces a sensation of burning in any tissue with which it comes into contact. Capsaicin and several related compounds are called capsaicinoids and are produced as a secondary metabolite by chili peppers, probably as deterrents against certain herbivores and fungi.[1] Pure capsaicin is a hydrophobic, colorless, odorless, crystalline to waxy compound.

    The American Association for Cancer Research reports studies suggesting capsaicin is able to kill prostate cancer cells by causing them to undergo apoptosis.[31][32] The studies were performed on tumors formed by human prostate cancer cell cultures grown in mouse models, and showed tumors treated with capsaicin were about one-fifth the size of the untreated tumors. There have been several clinical studies conducted in Japan and China that showed natural capsaicin directly inhibits the growth of leukemic cells.[33]

    31
    ^ Mori, A; Lehmann S, O'Kelly J et al. (March 2006). "Capsaicin, a component of red peppers, inhibits the growth of androgen-independent, p53 mutant prostate cancer cells". Cancer Research (American Association for Cancer Research) 66 (6): 3222–3229. doi:10.1158/0008-5472.CAN-05-0087. PMID 16540674. http://cancerres.aacrjournals.org/cgi/content/full/66/6/3222. Retrieved 2008-07-22.

    32
    ^ American Association for Cancer Research (2006). "Pepper component hot enough to trigger suicide in prostate cancer cells". http://www.eurekalert.org/pub_releases/2006-03/aafc-pch031306.php. Retrieved January 27, 2007.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    mrspjd said:

    capsaicin
    A quick google search produced the following info from the source cited below. Not necessarily the most reliable source, but a good place to start. I have not read the related PCa medical studies cited in the source, but if someone wants to pick up the lead, go for it, as I've posted the links from the source below! btw, this is not an endorsement nor a pan, just trying to keep an open mind, since capsaicin has been in the news recently related to other medical issues.

    source: http://en.wikipedia.org/wiki/Capsaicin
    Capsaicin (pronounced /kæpˈseɪ.ɨsɪn/) (8-methyl-N-vanillyl-6-nonenamide, (CH3)2CHCH=CH(CH2)4CONHCH2C6H3-4-(OH)-3-(OCH3)) is the active component of chili peppers, which are plants belonging to the genus Capsicum. It is an irritant for mammals, including humans, and produces a sensation of burning in any tissue with which it comes into contact. Capsaicin and several related compounds are called capsaicinoids and are produced as a secondary metabolite by chili peppers, probably as deterrents against certain herbivores and fungi.[1] Pure capsaicin is a hydrophobic, colorless, odorless, crystalline to waxy compound.

    The American Association for Cancer Research reports studies suggesting capsaicin is able to kill prostate cancer cells by causing them to undergo apoptosis.[31][32] The studies were performed on tumors formed by human prostate cancer cell cultures grown in mouse models, and showed tumors treated with capsaicin were about one-fifth the size of the untreated tumors. There have been several clinical studies conducted in Japan and China that showed natural capsaicin directly inhibits the growth of leukemic cells.[33]

    31
    ^ Mori, A; Lehmann S, O'Kelly J et al. (March 2006). "Capsaicin, a component of red peppers, inhibits the growth of androgen-independent, p53 mutant prostate cancer cells". Cancer Research (American Association for Cancer Research) 66 (6): 3222–3229. doi:10.1158/0008-5472.CAN-05-0087. PMID 16540674. http://cancerres.aacrjournals.org/cgi/content/full/66/6/3222. Retrieved 2008-07-22.

    32
    ^ American Association for Cancer Research (2006). "Pepper component hot enough to trigger suicide in prostate cancer cells". http://www.eurekalert.org/pub_releases/2006-03/aafc-pch031306.php. Retrieved January 27, 2007.

    Everyone
    The company I currently work for uses Capsaicin in several of the products we manufacture and I have eaten extremely hot food my entire life starting at probably 12 years old to 52 now.

    I wish the capsaicin I consumed in all the Hot peppers I've injested stopped my cancer but it did not. I continue to eat hot foods/spices/sauces which in include cayanne, habenero, jalepeno, cerito and any other hot pepper you can find...the brown ones in Chinese food. I believe that all these peppers have capsaicin - I need to look into this to confirm.

    If hot food stopped my cancer from growing or progressing...then I would have been long gone years ago had I not been injesting the delectable scorchers. Having my Davinci 12/29/09 I have fully returned to eating the same (large volume) and intensely hot foods about two months or so ago.

    Here's my fairly detailed path for anyone not yet aquainted with it:

    52 years old
    PSA 9/09 7.25
    PSA 10/09 6.125
    Diagnosis confirmed Oct 27, 2009
    8 Needle Biopsy = 5 clear , 3 postive
    <20%, 10%, 10%
    Gleason Score (3+3) 6 in all positive cores

    11/09 Second Opinion on Biopsy slides from Dr. Koch
    (4+3) = 7 5%
    (3+4) = 7 10%
    (3+4) = 7 10%

    Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined

    Da Vinci performed 12/29/09 - Dr. Hollensbee & Scott
    Sling installed at time of Da Vinci – not sure what name of it is but not the 800 that is causing all the problems. Attached to Coopers Ligament.


    Post Surgery Pathology:
    Prostate size 5 x 4 x 3.5 cm Weight: 27 g
    Gleason: Changed to (3+4) = 7
    Primary Pattern 3, 80%
    Secondary Pattern 4, 18%
    Tertiary Pattern 5, 2%
    Tumor Quantitation:
    Greatest Dimension, Largest tumor focus: 19 mm
    Additional Dimension 18 x 15 mm
    Location, largest tumor focus: Right posterior quadrant
    Multifocality: Yes
    Greatest dimension second largest focus 10 mm
    Location: second largest focus: Left Posterior quadrant
    Extraprostatic extension: Yes
    If yes, focal or non-focal: Nonfocal
    If yes: location(s) right and left antero-lateral
    Seminal vesicle invasion: No
    Cancer at surgical margin: No
    If no, closest distance with location: less than 1 mm, right posterior quadrant
    Apex involvement: No
    Bladder involvement: NO
    Lymph-vascular invasion: No
    Perineural invasion: Yes
    Lymph nodes: 9 from right pelvic 0/9 positive
    Stage: pT3a, pNo, pMX
    All nerves sparred - found two additional pudendal arteries

    FIRST PSA TEST 2-11-10 <0.1 NON-DETECTABLE

    Virtually Pad free 2-20-10

    SECOND PSA TEST 5-26-10 <0.1 NON-DETECTABLE

    Notes on Recovery: Was at my desk working (from home office – sales) 6 days following my surgery. No pain to speak of (very lucky as many have some pain) I think because I took the Tramadol they gave religiously and found it to be the best drug in the world. BM’s where the trickiest part and most uncomfortable in the early stages but improved with time – follow the diet they give you!...I strayed off and the next BM helped to get me back on track – I like food very hot and spicy - don’t recommend that for at least a month following surgery. Cream soups, mushroom, celery, and chicken worked great the first week following surgery. Mashed Potatoes…Ah the first time following surgery it was heaven!...the first really solid food I ate…..you will learn to appreciate food all over again as you add back your favorites following surgery when the time is right. Take all the help from everyone around you…it might be a while you get that opportunity again to be waited on hand and foot. Liquids are a concern but some affect people differently it seems reading through the discussion board…I found anything carbonated would cause much leaking…alcohol was not good either…but I justified doing it thinking It’s my training method to work on my bladder control!...lol I love homebrewed beers too much! And am an admitted hop head.

    ED path:
    Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.
    Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery (cannot remember but probably posted on CSN somewhere) had usable erections.

    Currently only need ¼ pill to get usable . Day 150 am starting to get semi hard without any drug.

    Day 163 had usable erection without any drug!!!

    Not finding I can go drugless permanently yet day 169 post surgery.

    Still hit and miss on drugless on day 194 July 11, 2010

    Randy in Indy
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Hochbob: Check this out. It may be the answer you look for!
    Hochbob: With an M.S. in Healthcare Management, I suggest you check this one: After I had my IMRT radiation, and my anxiety has been reduced considerably, I was still searching and
    reading any message board I could find online. And one of them, which I did not "save" in my computer, and I cannot find now had this information:

    A prostate diagnosed patient decided to go on a "watchful waiting" period before any treatment. During that time he -somehow- obtained information that "Capsicum" (hot pepper
    powder" sold in tablets online - and almost impossible to find in a local store- were effective in shrinking cancer. He told his doctor that he would take those for 6 months,
    and go in for his next check up. I am not sure, but if memory serves, he was taking 600mg
    4 times a day, before food because with food that stay in the stomach until digestion, it burnt his stomach, but before it passed to the small intestine faster. At 6 months check up,
    the tests came inconclusive - if he had cancer or not! He continued, and at 12 months, no cancer was detected!

    The posting looked like an "old wives tales," but then two doctors posted requests to that man, and posted their e-mails to contact them. The last I remember, he said that he was willing to take Capsicum the rest of his life, rather than go through RP or any traditional therapy. I tried to find that message board for you, but I am running into the selling gamut of websites, and had no luck. But I suggest you look for -under Capsicum and cancer, capsicum sellers and testimonials, etc. You may find something that most people believe do not exist.

    Can something like this exist? Am I an illiterate sucker, or one of those "herbs cure everything" believer? Not, at all! For the record, I am a retired social sciences professor, and I know the medical industry - both medical equipment manufacturers, the pharmaceutical industry, hospitals, and doctors - will not allow hot pepper to wreck their industries. I believe high levels of "Capsicum" may be effective to block cancer cells from replicating, and it may have to be taken for life. I would, therefore, suggest that you pursue this lead, and if you find that source, let us know. Remember: Sometimes something
    comes out of nowhere and change our lives. Take this lead and see. You have got nothing to lose. Just re-direct you search and see if you hit something! Good luck!

    Capsicum
    Has there been a study that validates this?

    Also, the person who was tested, I guess a biopsy that did not show cancer in the six and one year period....very frequent testing. Well there still is cancer even though it was not dectected.

    I had a second biopsy which did not show cancer, but I still have cancer. I did not take any Capsicum.

    Frankly I would rather stay with medical expertise. I have confidence in the medical profession..

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

    Good News
    Hochbob, I would tend to agree with Naturalist that there isn't much statistical difference between .85 asnd .8 given the variability of the testing process and laboratory technique. The good news is that the PSA isn't continuing to increase which may mean nothing at all (just a random data point that doesn't fit into a long range trend) or it may well mean that the rate of PCa growth is such that it may not be a threat or at least give you some time to ponder alternatives.

    I've often wondered whether the process of RP itself (or even a needle biopsy) might cause the spread of cancer that would otherwise have been contained within the prostate in an indolent form. It seems to me that the state of cancer in your original diagnosis at the time you did RP could very well have been indolent and slow growing and if some cancer cells leaked during the surgical process. It has taken six years for them to show up in a PSA rise. If you had a slow growing, indolent cancer before, maybe it's the same and a watchful waiting approach is appropriate. Of course all of that is pure speculation on my part and I haven't read anything that would shed any light on that one way or the other but it's a question you might want to pose to your doctor.

    Keep us advised as you go forward.

    Needle Biopsy
    I read about needle biopsy and the possible spread of cancer. I don't have the documentation available, however needle biopsies don't spread cancer. Prehaps one of the posters has this information readily available.

    Ira