Gleason 6 and let us kill it now

Samsungtech1
Samsungtech1 Member Posts: 351
edited August 2012 in Prostate Cancer #1
There have been alot of posts lately about gleason 6 with 1-2 cores positive. I can not understand why someone would not do AS as opposed to RP, IMRT, and a host of other treatments. Can someone please tell me how you would want to treat your body with radiation and not even know where the cancer is. It is confusing to me. Where do they radiate and why? I imagine it is the prostate bed, but how do they know it is there?
Obviously I am not spending my nights researching this, so call it a lazy mans quest for an answer.

Why would you want to do radiation and not know where the cancer is? Sorry if this sounds dumb, but it is happening more and more here and I just do not understand what is going on.

Basically referring to RPs with recurrence.

Mike
«1

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    I'm lost
    Mike, you've lost me here. Are you asking about why men with low risk PCa choose anything but AS or are you wondering about how they know where to radiate after PSA rises following RP?
  • Samsungtech1
    Samsungtech1 Member Posts: 351
    Kongo said:

    I'm lost
    Mike, you've lost me here. Are you asking about why men with low risk PCa choose anything but AS or are you wondering about how they know where to radiate after PSA rises following RP?

    Kongo
    I was told that the cancer goes to the blood stream. What I do not understand is people saying they are going for radiation because their PSA doubled. What exactly are they going to radiate? I guess my lack of understanding is slanting my judgment. Radiation is not a joke. I believe I have had enough to light up a small city, if we could harness it. Everytime I have received radiation it was because they knew cancer was there. I have no qualms about using it, but I want to know why. I feel I am missing something.

    If it is in the blood stream, my doctor told me PCa picks either hard or soft attacks. Most people get metastic bone cancer. Others get organ cancer. My dr. Feels once it has decided on which it wants it is going to keep attacking those areas. Only neutral ground is the brain. Both go there.

    So back to my question; how do these people with little detectable PSA know where to radiate?
  • Kongo
    Kongo Member Posts: 1,166 Member

    Kongo
    I was told that the cancer goes to the blood stream. What I do not understand is people saying they are going for radiation because their PSA doubled. What exactly are they going to radiate? I guess my lack of understanding is slanting my judgment. Radiation is not a joke. I believe I have had enough to light up a small city, if we could harness it. Everytime I have received radiation it was because they knew cancer was there. I have no qualms about using it, but I want to know why. I feel I am missing something.

    If it is in the blood stream, my doctor told me PCa picks either hard or soft attacks. Most people get metastic bone cancer. Others get organ cancer. My dr. Feels once it has decided on which it wants it is going to keep attacking those areas. Only neutral ground is the brain. Both go there.

    So back to my question; how do these people with little detectable PSA know where to radiate?

    Mysteries
    Mike,

    Swing gave a good overview of the overall PCa process. Prostate cancer spreads throughout the body in three ways: Through the bloodstream, through the lymphatic systems, and through direct contact to adjacent tissue.

    When prostate cancer cells divide they often clump together in groups. When these clumps get big enough we call them tumors. Tumors are always sloughing off cells into surrounding blood capillaries and the lymph ducts. Prostate cancer cells need nutrients just like any other cell. Our body's immune system does a pretty good job in attacking these random cells that pass into our blood stream and lymph system. Sometimes, for a variety of reasons due to genetics, perhaps other chemicals that fuel cancer growth (think diet), carcinogens, and so forth help cancer cells survive and start growing in other areas in our body. That's metastasis...the movement of cancer from its original source.

    If the cancer is "contained" inside the prostate gland, which just means they don't have any evidence that it is growing anywhere else and none of the tumors inside the gland have pushed through the protective capsule which surrounds the prostate, the surgeons treat this by removing the entire prostate or a radiation oncologist treats it by radiating the entire prostate. Much of the controversy about the various types of radiation treatment is the methods used to radiate the entire prostate and the dosage levels and how surrounding healthy tissue (urethra, bladder, rectum, etc.) is protected from potentially harmful radiation. With surgery the controversies involve whether a robot or open surgery are best suited to remove the entire prostate without damaging the nerves that enable erections or the bladder neck which enables a man to retain continence after surgery.

    In surgery, you can't just unbolt the prostate like a carburetor on your car. There is always going to be a little bit of prostate material left behind where the prostate is connected to the surrounding tissue, the bladder, and other plumbing functions surrounding the prostate that support the male reproductive system. These are the areas that they choose to radiate if there are indications that cancer has recurred after surgery and we generically refer to them as the "prostate bed" because that's where the former prostate used to lie.

    After initial treatment with surgery doctors monitor the PSA level as a means of determining the success of treatment. Since PSA is made from prostate cells (both healthy and cancerous prostate cells) after the PSA is removed any increase in PSA is a sign that either healthy prostate tissue left behind is generating PSA or that prostate cancer cells survive someplace else and are generating the PSA. Because the amount of prostate tissue left behind is usually so small, low PSA readings are not worrisome. If PSA increases, however, then they fear a recurrence. The general threshold for determining recurrence for a man who has had surgical removal is 0.2 ng/ml. The doubling time and PSA velocity are measures they use to determine the aggressiveness of the remaining cancer.

    Since one of the ways in which prostate cancer commonly spreads is to the tissue nearby the original tumors they tend to radiate that area that used to house the prostate, the prostate bed. Without very sensitive imaging this is a guess but it's an educated guess and over the years they have developed statistics that show radiating the prostate bed is successful in curbing cancer growth much of the time. Unfortunately it doesn't work all of the time.

    Hope this helps. It's obviously a difficult topic and I fear my layman's interpretation of this process probably falls short in some areas or I've mischaracterized something so I would urge you to discuss this with your medical team and insist that they explain it to you in a means you can understand.

    Best
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Kongo said:

    Mysteries
    Mike,

    Swing gave a good overview of the overall PCa process. Prostate cancer spreads throughout the body in three ways: Through the bloodstream, through the lymphatic systems, and through direct contact to adjacent tissue.

    When prostate cancer cells divide they often clump together in groups. When these clumps get big enough we call them tumors. Tumors are always sloughing off cells into surrounding blood capillaries and the lymph ducts. Prostate cancer cells need nutrients just like any other cell. Our body's immune system does a pretty good job in attacking these random cells that pass into our blood stream and lymph system. Sometimes, for a variety of reasons due to genetics, perhaps other chemicals that fuel cancer growth (think diet), carcinogens, and so forth help cancer cells survive and start growing in other areas in our body. That's metastasis...the movement of cancer from its original source.

    If the cancer is "contained" inside the prostate gland, which just means they don't have any evidence that it is growing anywhere else and none of the tumors inside the gland have pushed through the protective capsule which surrounds the prostate, the surgeons treat this by removing the entire prostate or a radiation oncologist treats it by radiating the entire prostate. Much of the controversy about the various types of radiation treatment is the methods used to radiate the entire prostate and the dosage levels and how surrounding healthy tissue (urethra, bladder, rectum, etc.) is protected from potentially harmful radiation. With surgery the controversies involve whether a robot or open surgery are best suited to remove the entire prostate without damaging the nerves that enable erections or the bladder neck which enables a man to retain continence after surgery.

    In surgery, you can't just unbolt the prostate like a carburetor on your car. There is always going to be a little bit of prostate material left behind where the prostate is connected to the surrounding tissue, the bladder, and other plumbing functions surrounding the prostate that support the male reproductive system. These are the areas that they choose to radiate if there are indications that cancer has recurred after surgery and we generically refer to them as the "prostate bed" because that's where the former prostate used to lie.

    After initial treatment with surgery doctors monitor the PSA level as a means of determining the success of treatment. Since PSA is made from prostate cells (both healthy and cancerous prostate cells) after the PSA is removed any increase in PSA is a sign that either healthy prostate tissue left behind is generating PSA or that prostate cancer cells survive someplace else and are generating the PSA. Because the amount of prostate tissue left behind is usually so small, low PSA readings are not worrisome. If PSA increases, however, then they fear a recurrence. The general threshold for determining recurrence for a man who has had surgical removal is 0.2 ng/ml. The doubling time and PSA velocity are measures they use to determine the aggressiveness of the remaining cancer.

    Since one of the ways in which prostate cancer commonly spreads is to the tissue nearby the original tumors they tend to radiate that area that used to house the prostate, the prostate bed. Without very sensitive imaging this is a guess but it's an educated guess and over the years they have developed statistics that show radiating the prostate bed is successful in curbing cancer growth much of the time. Unfortunately it doesn't work all of the time.

    Hope this helps. It's obviously a difficult topic and I fear my layman's interpretation of this process probably falls short in some areas or I've mischaracterized something so I would urge you to discuss this with your medical team and insist that they explain it to you in a means you can understand.

    Best

    Watchful Waiting for Low Grades
    In my view, there is lots of guessing in prostate cancer treatments. Choices go through monograms for survival and those are based on past experiences. Radiating areas without “visual” targets of cancer is pure luck but it got its rates of success.
    Success is therefore not assured and recommendations are for “guessing” treatments with the highest probability for good accomplishment.
    All treatments got its risks and side effects which become tradeoffs for one to choose. Quality of life against quantity of living.

    Low grade aggressive cancers are best for Watchful Waiting but many guys get so frightened when diagnosed with the cancer that all what comes to mind is to get rid of it even if one risk “damage” to his sex-life, becomes incontinent or gets permanent ulcerative colitis.
    Many educated patients also fear remorse in future for doing nothing, thinking that they have acted improperly or irresponsibly.

    We all differ in opinions to your subject of this thread. I believe that looking for cure is proper and so trying the best to catch the bandit is the way to choose, but firstly one should know about consequences and decide based on his preferences. I am a believer that by looking at things coordinately and acting timely one can reach to the highest standards of a treatment. Waiting with quality of life until the need for treatment arises.
    Here is a sincere comment from a survivor;http://csn.cancer.org/node/241954#comment-1245060

    Unfortunately it is rare to read comments from the ones that decide to do nothing.

    Best
    VG
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Watchful Waiting for Low Grades
    In my view, there is lots of guessing in prostate cancer treatments. Choices go through monograms for survival and those are based on past experiences. Radiating areas without “visual” targets of cancer is pure luck but it got its rates of success.
    Success is therefore not assured and recommendations are for “guessing” treatments with the highest probability for good accomplishment.
    All treatments got its risks and side effects which become tradeoffs for one to choose. Quality of life against quantity of living.

    Low grade aggressive cancers are best for Watchful Waiting but many guys get so frightened when diagnosed with the cancer that all what comes to mind is to get rid of it even if one risk “damage” to his sex-life, becomes incontinent or gets permanent ulcerative colitis.
    Many educated patients also fear remorse in future for doing nothing, thinking that they have acted improperly or irresponsibly.

    We all differ in opinions to your subject of this thread. I believe that looking for cure is proper and so trying the best to catch the bandit is the way to choose, but firstly one should know about consequences and decide based on his preferences. I am a believer that by looking at things coordinately and acting timely one can reach to the highest standards of a treatment. Waiting with quality of life until the need for treatment arises.
    Here is a sincere comment from a survivor;http://csn.cancer.org/node/241954#comment-1245060

    Unfortunately it is rare to read comments from the ones that decide to do nothing.

    Best
    VG

    As a perosn who is doing Active surveillance
    I agree with your comments

    "Low grade aggressive cancers are best for Watchful Waiting but many guys get so frightened when diagnosed with the cancer that all what comes to mind is to get rid of it even if one risk “damage” to his sex-life, becomes incontinent or gets permanent ulcerative colitis.
    Many educated patients also fear remorse in future for doing nothing, thinking that they have acted improperly or irresponsibly.

    We all differ in opinions to your subject of this thread. I believe that looking for cure is proper and so trying the best to catch the bandit is the way to choose, but firstly one should know about consequences and decide based on his preferences. I am a believer that by looking at things coordinately and acting timely one can reach to the highest standards of a treatment. Waiting with quality of life until the need for treatment arises"


    I was diagnosed in March 09. At first,
  • crhoads
    crhoads Member Posts: 7

    As a perosn who is doing Active surveillance
    I agree with your comments

    "Low grade aggressive cancers are best for Watchful Waiting but many guys get so frightened when diagnosed with the cancer that all what comes to mind is to get rid of it even if one risk “damage” to his sex-life, becomes incontinent or gets permanent ulcerative colitis.
    Many educated patients also fear remorse in future for doing nothing, thinking that they have acted improperly or irresponsibly.

    We all differ in opinions to your subject of this thread. I believe that looking for cure is proper and so trying the best to catch the bandit is the way to choose, but firstly one should know about consequences and decide based on his preferences. I am a believer that by looking at things coordinately and acting timely one can reach to the highest standards of a treatment. Waiting with quality of life until the need for treatment arises"


    I was diagnosed in March 09. At first,

    G6 does not spread through the lymphatic system.
    From Johnathan Epstein at Johns Hopkins....

    "Of over 14,000 totally embedded radical prostatectomies from multiple institutions, there was not a single case of a GS≤6 tumor with LN metastases. In contrast to prevailing assumptions, GS≤6 tumors do not appear to metastasize to LNs. Rather, Gleason pattern 4 or 5, as better defined by the current ISUP updated grading system, is required for metastatic disease."


    http://www.ncbi.nlm.nih.gov/pubmed/22531173
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    As a perosn who is doing Active surveillance
    I agree with your comments

    "Low grade aggressive cancers are best for Watchful Waiting but many guys get so frightened when diagnosed with the cancer that all what comes to mind is to get rid of it even if one risk “damage” to his sex-life, becomes incontinent or gets permanent ulcerative colitis.
    Many educated patients also fear remorse in future for doing nothing, thinking that they have acted improperly or irresponsibly.

    We all differ in opinions to your subject of this thread. I believe that looking for cure is proper and so trying the best to catch the bandit is the way to choose, but firstly one should know about consequences and decide based on his preferences. I am a believer that by looking at things coordinately and acting timely one can reach to the highest standards of a treatment. Waiting with quality of life until the need for treatment arises"


    I was diagnosed in March 09. At first,

    I agree with your comments

    "Low grade aggressive cancers are best for Watchful Waiting but many guys get so frightened when diagnosed with the cancer that all what comes to mind is to get rid of it even if one risk “damage” to his sex-life, becomes incontinent or gets permanent ulcerative colitis.
    Many educated patients also fear remorse in future for doing nothing, thinking that they have acted improperly or irresponsibly.

    We all differ in opinions to your subject of this thread. I believe that looking for cure is proper and so trying the best to catch the bandit is the way to choose, but firstly one should know about consequences and decide based on his preferences. I am a believer that by looking at things coordinately and acting timely one can reach to the highest standards of a treatment. Waiting with quality of life until the need for treatment arises"


    I was diagnosed in March 09. At first, I experienced a lot emotional ups and down, and worried a lot, that my cancer would progress, although, I also did not want to suffer side effects of treatment, or be treated. My strong inclination was to take action and do something.
    As I continued to do reseach and found about about key studies that support AS I became more and more adjusted .

    I've been posting here during the time of my diagnosie, and decision to to AS. During the first few years posting here, I was the only person advocating AS. I received a lot of negative comments about AS. In fact, one of the posters who lived in Indiana who had surgery thought that I was out of it and was praying for me because of my "poor treatment decision".

    I have advocated AS to many at this site. Eventhough these men qualified for AS, my recommendations fell on deaf ears. These men choose an Active Treatment instead with possible consequences. These treatments include but are not limited to surgery, cyberknife and other forms of radiation. Some of these men who have had these treatments who post here strongly advocate their "choice of treatment" at the expense of other tratments, They defend their treatment choice as if they own it.



    Lately, I realize if there is no extracapsular extension, I can be treated as I would now, if I had a Gleason 7. So for example, if I want to be treated with CyberKnife, I can wait to be treated, or if I am lucky not be treated at all





    Lately I noticed that there are posters who are seeking AS. This may be a trend as a result of the information that was published in the last year.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Watchful Waiting for Low Grades
    In my view, there is lots of guessing in prostate cancer treatments. Choices go through monograms for survival and those are based on past experiences. Radiating areas without “visual” targets of cancer is pure luck but it got its rates of success.
    Success is therefore not assured and recommendations are for “guessing” treatments with the highest probability for good accomplishment.
    All treatments got its risks and side effects which become tradeoffs for one to choose. Quality of life against quantity of living.

    Low grade aggressive cancers are best for Watchful Waiting but many guys get so frightened when diagnosed with the cancer that all what comes to mind is to get rid of it even if one risk “damage” to his sex-life, becomes incontinent or gets permanent ulcerative colitis.
    Many educated patients also fear remorse in future for doing nothing, thinking that they have acted improperly or irresponsibly.

    We all differ in opinions to your subject of this thread. I believe that looking for cure is proper and so trying the best to catch the bandit is the way to choose, but firstly one should know about consequences and decide based on his preferences. I am a believer that by looking at things coordinately and acting timely one can reach to the highest standards of a treatment. Waiting with quality of life until the need for treatment arises.
    Here is a sincere comment from a survivor;http://csn.cancer.org/node/241954#comment-1245060

    Unfortunately it is rare to read comments from the ones that decide to do nothing.

    Best
    VG

    As a perosn who is doing Active surveillance
    ..
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    crhoads said:

    G6 does not spread through the lymphatic system.
    From Johnathan Epstein at Johns Hopkins....

    "Of over 14,000 totally embedded radical prostatectomies from multiple institutions, there was not a single case of a GS≤6 tumor with LN metastases. In contrast to prevailing assumptions, GS≤6 tumors do not appear to metastasize to LNs. Rather, Gleason pattern 4 or 5, as better defined by the current ISUP updated grading system, is required for metastatic disease."


    http://www.ncbi.nlm.nih.gov/pubmed/22531173

    Interesting findings
    Crhoads
    This is an interesting finding by such renowned pathologist. It would be interesting to know how far back they have gone to collect the data. I can see that they used cases based on the newer (2005) ISUP updated Gleason Score system that upgraded Gs5 to 6.
    However I am sceptical if all recurrences in Gs6 guys were caused by metastases at far places (bone and organs). In the study they found that recurrence cases were due to mistakes in the laboratory work. I wonder what could be the opinion of Epstein to my case of recurrence with a confirmed Gs5 (at biopsy and post RP).
    Nevertheless your post is impressive and deserves to be noted by the low risk guys.

    Ira,
    I understand your feelings through ward my above post. You are an active patient and I admire your courage confronting your status and choosing AS. I always think of you and want to refer your case history to the many visiting this forum with indolent type of cancers. In fact I believe that your preferences are outstanding and the many should at least try to “copy” your case.

    Regards to both of you.

    VGama
  • Art_Deco
    Art_Deco Member Posts: 5

    I agree with your comments

    "Low grade aggressive cancers are best for Watchful Waiting but many guys get so frightened when diagnosed with the cancer that all what comes to mind is to get rid of it even if one risk “damage” to his sex-life, becomes incontinent or gets permanent ulcerative colitis.
    Many educated patients also fear remorse in future for doing nothing, thinking that they have acted improperly or irresponsibly.

    We all differ in opinions to your subject of this thread. I believe that looking for cure is proper and so trying the best to catch the bandit is the way to choose, but firstly one should know about consequences and decide based on his preferences. I am a believer that by looking at things coordinately and acting timely one can reach to the highest standards of a treatment. Waiting with quality of life until the need for treatment arises"


    I was diagnosed in March 09. At first, I experienced a lot emotional ups and down, and worried a lot, that my cancer would progress, although, I also did not want to suffer side effects of treatment, or be treated. My strong inclination was to take action and do something.
    As I continued to do reseach and found about about key studies that support AS I became more and more adjusted .

    I've been posting here during the time of my diagnosie, and decision to to AS. During the first few years posting here, I was the only person advocating AS. I received a lot of negative comments about AS. In fact, one of the posters who lived in Indiana who had surgery thought that I was out of it and was praying for me because of my "poor treatment decision".

    I have advocated AS to many at this site. Eventhough these men qualified for AS, my recommendations fell on deaf ears. These men choose an Active Treatment instead with possible consequences. These treatments include but are not limited to surgery, cyberknife and other forms of radiation. Some of these men who have had these treatments who post here strongly advocate their "choice of treatment" at the expense of other tratments, They defend their treatment choice as if they own it.



    Lately, I realize if there is no extracapsular extension, I can be treated as I would now, if I had a Gleason 7. So for example, if I want to be treated with CyberKnife, I can wait to be treated, or if I am lucky not be treated at all





    Lately I noticed that there are posters who are seeking AS. This may be a trend as a result of the information that was published in the last year.

    Thanks
    I appreciate your post. As a "newbie" as someone referred to me I am learning a lot on this site and I do feel comfortable with my choice to follow AS for now. I have read that about 50% or more of men who choose it get treatment at some time later and wonder how many of those do it because they keep reading about other treatments and finally decide to do it or if something changed. I like the idea of no side effects but I do worry about what my next PSA will be.

    Two ex wives think AS is good for me. My significant other want me to do something. Go figure. I try not to read anything into that. The exwives have kids who stand to inherit LOL hope I have better luck choosing pc treatment than women.

    I know what you mean about bneing out there by yourself. My friends who know my situation wonder if I have lost my mind and think I shuld get treated.

    Like you I hope i never have to change my decision.
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Art_Deco said:

    Thanks
    I appreciate your post. As a "newbie" as someone referred to me I am learning a lot on this site and I do feel comfortable with my choice to follow AS for now. I have read that about 50% or more of men who choose it get treatment at some time later and wonder how many of those do it because they keep reading about other treatments and finally decide to do it or if something changed. I like the idea of no side effects but I do worry about what my next PSA will be.

    Two ex wives think AS is good for me. My significant other want me to do something. Go figure. I try not to read anything into that. The exwives have kids who stand to inherit LOL hope I have better luck choosing pc treatment than women.

    I know what you mean about bneing out there by yourself. My friends who know my situation wonder if I have lost my mind and think I shuld get treated.

    Like you I hope i never have to change my decision.

    Sharing your “work”
    Ira

    You are right. Many guys recently become advocates of AS, though this military-like regimen exists from the old days under the name of Watchful Waiting. Many who are against AS think that the “surveillance” equals to do nothing! They are not aware of the regimen it entails and the stress one goes through while waiting for the results.
    Many prefer a quick “fix” and many simply fall in the trap of the sharks.

    However, you should not think that your “…recommendations fell on deaf ears”. Everyone is the owner of his “karma” and captain of his boat. Decisions should be done under his/& his family preferences. This is always the best to everybody and we should hope for the success for everyone.
    Your shared information is read by many visiting this site and they all are benefiting from your recommendations. I myself am impressed by your progress but AS is too late for me.

    Please continue sharing your “work”.

    Sincerely,
    VGama
  • mrspjd
    mrspjd Member Posts: 694 Member

    Sharing your “work”
    Ira

    You are right. Many guys recently become advocates of AS, though this military-like regimen exists from the old days under the name of Watchful Waiting. Many who are against AS think that the “surveillance” equals to do nothing! They are not aware of the regimen it entails and the stress one goes through while waiting for the results.
    Many prefer a quick “fix” and many simply fall in the trap of the sharks.

    However, you should not think that your “…recommendations fell on deaf ears”. Everyone is the owner of his “karma” and captain of his boat. Decisions should be done under his/& his family preferences. This is always the best to everybody and we should hope for the success for everyone.
    Your shared information is read by many visiting this site and they all are benefiting from your recommendations. I myself am impressed by your progress but AS is too late for me.

    Please continue sharing your “work”.

    Sincerely,
    VGama

    Often overlooked
    Often overlooked, last year, the respected National Institutes of Health (NIH) endorsed Active Surveillance/Active Monitoring and delay of tx for low risk PCa:
    http://www.nih.gov/news/health/dec2011/od-07.htm
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Art_Deco said:

    Thanks
    I appreciate your post. As a "newbie" as someone referred to me I am learning a lot on this site and I do feel comfortable with my choice to follow AS for now. I have read that about 50% or more of men who choose it get treatment at some time later and wonder how many of those do it because they keep reading about other treatments and finally decide to do it or if something changed. I like the idea of no side effects but I do worry about what my next PSA will be.

    Two ex wives think AS is good for me. My significant other want me to do something. Go figure. I try not to read anything into that. The exwives have kids who stand to inherit LOL hope I have better luck choosing pc treatment than women.

    I know what you mean about bneing out there by yourself. My friends who know my situation wonder if I have lost my mind and think I shuld get treated.

    Like you I hope i never have to change my decision.

    Art
    Once you were diagnosed you became a veteran, in my opinion the term “newbie” is not appropriate.
    Good to have an ally
    Here are results of a study that quantifies the paths that patients in an Active Surveillance study took.
    This study was done in Canada by Dr. Klotz (an expert’s expert on AS..An “artist”)

    Here are some results of Lawrence Klotz, MD, well respected
    new
    active surveillance expert

    protocol:

    PSA and DRE every 3 months
    Prostate ultrasound every 12 months
    Repeat biopsy at month 12 and 36

    After 8 years:

    - 55% remain untreated with stable disease

    - 36% decided to have treatment (even though they did not have progression)

    - 9% treated with surgery or radiation for increase in psa or Gleason score

    - none have metastatic disease
    < 1% men died of prostate cancer
    ………………………………
    As you have figured out there are a lot of people out there who are not informed, but think that it’s OK to advise .I strongly recommend that you attend prostate cancer support group(s) in your area in order to develop associations with those who are informed and hopefully are in an active surveillance protocol, and can give you support for your decision, as well as sharing information with you for active treatments that you might have to consider in the future.

    Your doing fine....keep on posting and learning
  • mrspjd
    mrspjd Member Posts: 694 Member

    Art
    Once you were diagnosed you became a veteran, in my opinion the term “newbie” is not appropriate.
    Good to have an ally
    Here are results of a study that quantifies the paths that patients in an Active Surveillance study took.
    This study was done in Canada by Dr. Klotz (an expert’s expert on AS..An “artist”)

    Here are some results of Lawrence Klotz, MD, well respected
    new
    active surveillance expert

    protocol:

    PSA and DRE every 3 months
    Prostate ultrasound every 12 months
    Repeat biopsy at month 12 and 36

    After 8 years:

    - 55% remain untreated with stable disease

    - 36% decided to have treatment (even though they did not have progression)

    - 9% treated with surgery or radiation for increase in psa or Gleason score

    - none have metastatic disease
    < 1% men died of prostate cancer
    ………………………………
    As you have figured out there are a lot of people out there who are not informed, but think that it’s OK to advise .I strongly recommend that you attend prostate cancer support group(s) in your area in order to develop associations with those who are informed and hopefully are in an active surveillance protocol, and can give you support for your decision, as well as sharing information with you for active treatments that you might have to consider in the future.

    Your doing fine....keep on posting and learning

    Humbled to be a newbie
    FWIW, I am a newbie, proud of it, and will always be a newbie as my PCa education is continuous. Every time I learn something new about PCa (which is often), I am reminded of the complex nature of this insidious disease. For as much as is known, even the professional medical "experts" know little about PCa and cancer in general. Nothing wrong with being a newbie. IMO, it is a humbling word.
  • laserlight
    laserlight Member Posts: 165
    mrspjd said:

    Humbled to be a newbie
    FWIW, I am a newbie, proud of it, and will always be a newbie as my PCa education is continuous. Every time I learn something new about PCa (which is often), I am reminded of the complex nature of this insidious disease. For as much as is known, even the professional medical "experts" know little about PCa and cancer in general. Nothing wrong with being a newbie. IMO, it is a humbling word.

    I THINK
    It is always good to read over the posts here, I myself have learned a lot. The one thing that is in our favor is that there are a number of differant treatment options. Prostate cancer sucks big time.

    ART, you are both a BROTHER and VETERAN in the fight of PC. There is nothing wrong with AS. My doctor explained this to me, but the PC that I had was to far along to enter into AS treatment. Now I am post surgery and following an AS treatment plan.

    The term newbie really has no meaning on this site. We are all dealing with a major life altering event. The information that is presented here is for the most part based on personal and medical input. Use this time to research PC as much as possible, the other posts here has very good information on resources.

    Kurt
  • Samsungtech1
    Samsungtech1 Member Posts: 351

    Art
    Once you were diagnosed you became a veteran, in my opinion the term “newbie” is not appropriate.
    Good to have an ally
    Here are results of a study that quantifies the paths that patients in an Active Surveillance study took.
    This study was done in Canada by Dr. Klotz (an expert’s expert on AS..An “artist”)

    Here are some results of Lawrence Klotz, MD, well respected
    new
    active surveillance expert

    protocol:

    PSA and DRE every 3 months
    Prostate ultrasound every 12 months
    Repeat biopsy at month 12 and 36

    After 8 years:

    - 55% remain untreated with stable disease

    - 36% decided to have treatment (even though they did not have progression)

    - 9% treated with surgery or radiation for increase in psa or Gleason score

    - none have metastatic disease
    < 1% men died of prostate cancer
    ………………………………
    As you have figured out there are a lot of people out there who are not informed, but think that it’s OK to advise .I strongly recommend that you attend prostate cancer support group(s) in your area in order to develop associations with those who are informed and hopefully are in an active surveillance protocol, and can give you support for your decision, as well as sharing information with you for active treatments that you might have to consider in the future.

    Your doing fine....keep on posting and learning

    Hopeful
    I believe, although I did not lay it outas well as I should have, that you had the answer. I agree who.e heartedly with you. I bet you would do well with poker.
    I was just trying to point something out, in a round about way.

    Thanks to you and Kongo and all the others. We work it around and eventually the "path" opens up. I was just concerned that a lot of people seem to be jumping on RP, cyberknife, whatever. There is a time whe it is time to do it, but lately it just seemed to me that people were jumping the gun. Research is good, but if all you research is treatments, success rates. Then you are going for it without thinking it through.

    I was just hoping to bring this into the light. Finding the best treatment is great, but pulling the trigger to soon is not good.

    Thanks for your great post.

    Mike
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    mrspjd said:

    Often overlooked
    Often overlooked, last year, the respected National Institutes of Health (NIH) endorsed Active Surveillance/Active Monitoring and delay of tx for low risk PCa:
    http://www.nih.gov/news/health/dec2011/od-07.htm

    dear mrs pjd
    thank you for your post from the nih. It was informative..I placed my email on the distribution list.

    There are various definitions of vets; to me one of the definitions is someone who fights the fight like you have done
  • mrspjd
    mrspjd Member Posts: 694 Member

    Hopeful
    I believe, although I did not lay it outas well as I should have, that you had the answer. I agree who.e heartedly with you. I bet you would do well with poker.
    I was just trying to point something out, in a round about way.

    Thanks to you and Kongo and all the others. We work it around and eventually the "path" opens up. I was just concerned that a lot of people seem to be jumping on RP, cyberknife, whatever. There is a time whe it is time to do it, but lately it just seemed to me that people were jumping the gun. Research is good, but if all you research is treatments, success rates. Then you are going for it without thinking it through.

    I was just hoping to bring this into the light. Finding the best treatment is great, but pulling the trigger to soon is not good.

    Thanks for your great post.

    Mike

    Million $ Questions
    Mike,

    Kudos to you as, once again, you seem to have started a thread that generates and evokes a wide range of interesting and stimulating discussions with many different perspectives and opinions. It seems your thread got off track a bit but, that’s not uncommon on CSN forums.

    I wanted to add some comments pertaining to your complex question (the one that started this thread in the first place). If I understood your thinking, I believe your original inquiry was about radiation therapy (RT) txs for recurrence following RP in the context of a rising PSA where there is no other evidence, other than a rising PSA, of local or distal PCa tumor based on currently available diagnostic imaging tests. RT tx following RP may be either Adjuvant (ART) or Salvage (SRT: ≥ 6 mos post RP). I think you also may be asking, in cases where PSA levels may be rising post RP, if no imaging tests indicate location or extent of PCa, possibly due to micrometastasis, then when does a rising PSA determine a PCa “recurrence?” And when, or at what timeline point, and where, do you direct RT if no tumors are found locally or distally? Additionally, if recurrence is confirmed post RP by definitions of recurrence, is it best to treat that recurrence with RT alone, or with a combination of RT and Hormones, i.e. ADT—Androgen Deprivation Therapy. This leads to add’l questions (and another can of worms) such as, do you include lymph nodes in the radiation tx field, if so, to what extent—local only (if not dissected at RP) or local and extended; and what is the most effective, yet safe, RT Gy dosing to “kill” cancer cells, preserve healthy cells, but avoid collateral tissue injury even when utilizing the most modern RT delivery systems that track real time target movement.

    PCa is obviously a very complicated disease. Mike, you’ve posed some million $ questions that PCa medical experts, researchers and the best and brightest scientific minds have struggled with for years. If I or anyone else could answer those questions definitively, surely we would win the million $ prize.

    PCa is called PCa because it originates in the Prostate gland. An expert pathologist specializing in analysis of cancer cell specimens can differentiate between cancer cells that originate in the Prostate vs, say, other cancer cells that originate in the body elsewhere, such as in the bladder, bone, or lung. As your doctor described, most often advanced PCa likes to metastasize to either bone (hard) or soft tissue/organs, such as the lungs. If PCa has metastasized to the lungs or the bones, it is still considered PCa, not lung cancer or bone cancer, respectively. If there is any question and/or, if tx protocol/outcome depends on definitive cell identification, then add’l biopsies may be taken to help the doctor differentiate the origin the cancer.

    Micrometastasis refers to PCa tumor cells that are too tiny to be seen under the most powerful path lab microscope or by some of the latest available imaging tests. These minuscule cells may have escaped from the prostate pre tx or be left behind post tx and hide out anywhere in the body before finding the right environment to grow, divide and multiply. Or they may remain indolent. Unlike some other cancers, with PCa, PSA is an important blood marker that may be a red flag singaling something is going on, such as PCa or a recurrence. In the future, there may better tests to distinguish indolent PCa cells from lethal aggressive PCa cells. These future tests, some currently in the medical pipeline, may help patients and doctors identify their "type" of PCa and thereby, make better tx choices, including AS/M, which also is considered a PCa tx.

    Two different definitions for post RT biochemical failure (BCF/BF) are the Phoenix definition and the ASTRO definition, respectively. The Phoenix definition is generally defined as “a rise by 2 ng/mL or more above the nadir PSA after EBRT with or without HT.” Several articles and research papers seem to favor the Phoenix definition vs the ASTRO definition for recurrence. Post RP PSA ideally is undetectable (sometimes called zeros). PSADT and velocity are features of rising PSA that also need to be considered. Following are the links to two interesting studies that may further address your questions about post RP tx in the context of rising PSA: “Prostate Cancer–Specific Survival Following Salvage Radiotherapy vs Observation in Men With Biochemical Recurrence After Radical Prostatectomy”
    http://jama.jamanetwork.com/article.aspx?articleid=182096
    and, “Salvage radiotherapy after radical prostatectomy” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2692144/

    Whether RT is used as primary first line tx of PCa or as Adjuvant/Salvage RT post RP, add’l factors need to be taken into consideration for tx, such as safe yet effective Gy dosing; scope of tx to the prostate (if not removed), to the prostate bed and/or whether to include local lymph nodes. These factors depend on the patient, the Tumor staging, and the RO’s “expert” medical judgment. There is a wide range of diverse thinking among experienced/skilled RO’s treating PCa, such as whether it’s best to include local lymph nodes, extended nodes or no nodes in the scope of the RT tx and also what the most effective, yet safe Gy dosing, is for “curative intent” of tx.

    Re: “how do these people with little detectable PSA know where to radiate?” Unfortunately, sometimes they don’t. While some doctors may be making educated guesses, I hope that knowledgeable and experienced PCa specialists are making calculated decisions. This would include using evidenced based medicine (see below), weighing benefits vs risks for each case independently, along with information obtained from the best available newer forms of diagnostic imaging tests, when indicated, such as but not limited to, the F-18 PET/CT or the still experimental C11 Choline imaging. In some high risk or advanced PCa cases, sometimes a distinction needs to be made as to whether the PCa is systemic (wide spread mets throughout the body) vs focal (localized and/or distal metastasized tumors, usually of five or less.) Focal metastasized PCa is usually referred to as oligometastases, or as Dr. “Snuffy” Meyer’s spells it “ogliometastatic.” Here’s a link to one of his presentations on that subject (scan down to June 29, 2010: “multiple tumor remission”). http://askdrmyers.wordpress.com/category/ogliometastatic-disease/
    You may also be interested in Dr. Kwon’s presentation at last years PCRI conference where he discusses C11 Choline imaging and systemic vs focal PCa mets, including soft tissue and bone mets. Here’s that url: http://askdrbarken.wordpress.com/2011/12/25/c-11-choline-petct-scan-dr-eugene-kwon-mayo-clinic/

    “Levels of evidence” (evidence-based medicine) and statistics from many clinical/research studies are often used as guidelines when considering PCa tx protocols for primary and recurrent cancer txs. Evidenced based medicine is a hotly debated topic by many medical professionals as well as non-professionals. If you fall on the wrong side of the statistics, you may as well throw all the stats & so called evidence out the window. Dr. Scardino makes that point in his book “The Complete Guide to PCa.” And, on page 424, Scardino writes: “Famed British Statesman, orator, novelist, Benjamin Disraeli, noted that there are three kinds of lies: ‘lies, damn lies, and statistics.’ Study outcomes can be affected by subtle alterations in interpretation or experimental design. Clinical trials can cost millions of dollars and a company’s fortunes, or even its very survival, might hinge on the outcome. It’s wise to be aware of who sponsored a study and what, if anything, the sponsor had to gain. Where results are confusing or contradictory, experts should be able to help you sort things out and access what is most significant and believable.”

    FWIW, I am not a medical professional and share lay-opinions and info based on personal experience and interpretation of research studies, as do other CSN members. Research data and opinion vary greatly among medical professionals and non-professionals alike. Therefore, different experiences, perspectives and dissenting discussions are to be expected on the forum, even encouraged, as long as they are respectful, civil and do not violate the CSN terms and conditions that we agreed to when we joined this forum.

    Thx again, Mike. All the very best.

    mrs pjd
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member

    Kongo
    I was told that the cancer goes to the blood stream. What I do not understand is people saying they are going for radiation because their PSA doubled. What exactly are they going to radiate? I guess my lack of understanding is slanting my judgment. Radiation is not a joke. I believe I have had enough to light up a small city, if we could harness it. Everytime I have received radiation it was because they knew cancer was there. I have no qualms about using it, but I want to know why. I feel I am missing something.

    If it is in the blood stream, my doctor told me PCa picks either hard or soft attacks. Most people get metastic bone cancer. Others get organ cancer. My dr. Feels once it has decided on which it wants it is going to keep attacking those areas. Only neutral ground is the brain. Both go there.

    So back to my question; how do these people with little detectable PSA know where to radiate?

    What do they "radiate"?
    Mike:

    Regardless of the method of radiation used, the objective is to radiate the ENTIRE prostate because they can't be exactly sure where the cancer is located w/in the prostate (assuming, of course, that the cancer is actually still confined to the prostate, which may or may not be the case).

    MRI and CAT scan imaging is used to try to determine the location of the cancer but this is largely just an "educated" guess based on the scans which they use to develop a pattern of radiation delivery focusing the radiation where they "think" it is needed most.

    Cancer is spread if it reaches the blood or lymphatic system. This "should" not happen if the cancer is still contained w/in the prostate capsule which is why they try to hit the entire prostate w/radiation (just as the surgeon tries to remove the entire prostate). However, once the cancer breaches the capsule via the seminal (blood) vesicles or lymph nodes, all bets are off.

    If it is determined that the cancer has spread, the common recommendation is to hit it w/IMRT and hormone treatment to kill and/or suppress whatever cancer cells remain in the prostate but, once the cancer has actually spread beyond the prostate, chemo is really the only other "treatment" available because they don't know where else the cancer may have migrated to within the body (so they have to hit the entire body w/chemo to try to suppress it) UNLESS another another specific cancer can actually be found and treated w/radiation and/or surgery. Common associated cancers resulting from PCa cancer breach are rectal, bladder and bone cancer.

    Hope this helps you to understand the process a little better.

    Ciao!
  • laserlight
    laserlight Member Posts: 165
    mrspjd said:

    Million $ Questions
    Mike,

    Kudos to you as, once again, you seem to have started a thread that generates and evokes a wide range of interesting and stimulating discussions with many different perspectives and opinions. It seems your thread got off track a bit but, that’s not uncommon on CSN forums.

    I wanted to add some comments pertaining to your complex question (the one that started this thread in the first place). If I understood your thinking, I believe your original inquiry was about radiation therapy (RT) txs for recurrence following RP in the context of a rising PSA where there is no other evidence, other than a rising PSA, of local or distal PCa tumor based on currently available diagnostic imaging tests. RT tx following RP may be either Adjuvant (ART) or Salvage (SRT: ≥ 6 mos post RP). I think you also may be asking, in cases where PSA levels may be rising post RP, if no imaging tests indicate location or extent of PCa, possibly due to micrometastasis, then when does a rising PSA determine a PCa “recurrence?” And when, or at what timeline point, and where, do you direct RT if no tumors are found locally or distally? Additionally, if recurrence is confirmed post RP by definitions of recurrence, is it best to treat that recurrence with RT alone, or with a combination of RT and Hormones, i.e. ADT—Androgen Deprivation Therapy. This leads to add’l questions (and another can of worms) such as, do you include lymph nodes in the radiation tx field, if so, to what extent—local only (if not dissected at RP) or local and extended; and what is the most effective, yet safe, RT Gy dosing to “kill” cancer cells, preserve healthy cells, but avoid collateral tissue injury even when utilizing the most modern RT delivery systems that track real time target movement.

    PCa is obviously a very complicated disease. Mike, you’ve posed some million $ questions that PCa medical experts, researchers and the best and brightest scientific minds have struggled with for years. If I or anyone else could answer those questions definitively, surely we would win the million $ prize.

    PCa is called PCa because it originates in the Prostate gland. An expert pathologist specializing in analysis of cancer cell specimens can differentiate between cancer cells that originate in the Prostate vs, say, other cancer cells that originate in the body elsewhere, such as in the bladder, bone, or lung. As your doctor described, most often advanced PCa likes to metastasize to either bone (hard) or soft tissue/organs, such as the lungs. If PCa has metastasized to the lungs or the bones, it is still considered PCa, not lung cancer or bone cancer, respectively. If there is any question and/or, if tx protocol/outcome depends on definitive cell identification, then add’l biopsies may be taken to help the doctor differentiate the origin the cancer.

    Micrometastasis refers to PCa tumor cells that are too tiny to be seen under the most powerful path lab microscope or by some of the latest available imaging tests. These minuscule cells may have escaped from the prostate pre tx or be left behind post tx and hide out anywhere in the body before finding the right environment to grow, divide and multiply. Or they may remain indolent. Unlike some other cancers, with PCa, PSA is an important blood marker that may be a red flag singaling something is going on, such as PCa or a recurrence. In the future, there may better tests to distinguish indolent PCa cells from lethal aggressive PCa cells. These future tests, some currently in the medical pipeline, may help patients and doctors identify their "type" of PCa and thereby, make better tx choices, including AS/M, which also is considered a PCa tx.

    Two different definitions for post RT biochemical failure (BCF/BF) are the Phoenix definition and the ASTRO definition, respectively. The Phoenix definition is generally defined as “a rise by 2 ng/mL or more above the nadir PSA after EBRT with or without HT.” Several articles and research papers seem to favor the Phoenix definition vs the ASTRO definition for recurrence. Post RP PSA ideally is undetectable (sometimes called zeros). PSADT and velocity are features of rising PSA that also need to be considered. Following are the links to two interesting studies that may further address your questions about post RP tx in the context of rising PSA: “Prostate Cancer–Specific Survival Following Salvage Radiotherapy vs Observation in Men With Biochemical Recurrence After Radical Prostatectomy”
    http://jama.jamanetwork.com/article.aspx?articleid=182096
    and, “Salvage radiotherapy after radical prostatectomy” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2692144/

    Whether RT is used as primary first line tx of PCa or as Adjuvant/Salvage RT post RP, add’l factors need to be taken into consideration for tx, such as safe yet effective Gy dosing; scope of tx to the prostate (if not removed), to the prostate bed and/or whether to include local lymph nodes. These factors depend on the patient, the Tumor staging, and the RO’s “expert” medical judgment. There is a wide range of diverse thinking among experienced/skilled RO’s treating PCa, such as whether it’s best to include local lymph nodes, extended nodes or no nodes in the scope of the RT tx and also what the most effective, yet safe Gy dosing, is for “curative intent” of tx.

    Re: “how do these people with little detectable PSA know where to radiate?” Unfortunately, sometimes they don’t. While some doctors may be making educated guesses, I hope that knowledgeable and experienced PCa specialists are making calculated decisions. This would include using evidenced based medicine (see below), weighing benefits vs risks for each case independently, along with information obtained from the best available newer forms of diagnostic imaging tests, when indicated, such as but not limited to, the F-18 PET/CT or the still experimental C11 Choline imaging. In some high risk or advanced PCa cases, sometimes a distinction needs to be made as to whether the PCa is systemic (wide spread mets throughout the body) vs focal (localized and/or distal metastasized tumors, usually of five or less.) Focal metastasized PCa is usually referred to as oligometastases, or as Dr. “Snuffy” Meyer’s spells it “ogliometastatic.” Here’s a link to one of his presentations on that subject (scan down to June 29, 2010: “multiple tumor remission”). http://askdrmyers.wordpress.com/category/ogliometastatic-disease/
    You may also be interested in Dr. Kwon’s presentation at last years PCRI conference where he discusses C11 Choline imaging and systemic vs focal PCa mets, including soft tissue and bone mets. Here’s that url: http://askdrbarken.wordpress.com/2011/12/25/c-11-choline-petct-scan-dr-eugene-kwon-mayo-clinic/

    “Levels of evidence” (evidence-based medicine) and statistics from many clinical/research studies are often used as guidelines when considering PCa tx protocols for primary and recurrent cancer txs. Evidenced based medicine is a hotly debated topic by many medical professionals as well as non-professionals. If you fall on the wrong side of the statistics, you may as well throw all the stats & so called evidence out the window. Dr. Scardino makes that point in his book “The Complete Guide to PCa.” And, on page 424, Scardino writes: “Famed British Statesman, orator, novelist, Benjamin Disraeli, noted that there are three kinds of lies: ‘lies, damn lies, and statistics.’ Study outcomes can be affected by subtle alterations in interpretation or experimental design. Clinical trials can cost millions of dollars and a company’s fortunes, or even its very survival, might hinge on the outcome. It’s wise to be aware of who sponsored a study and what, if anything, the sponsor had to gain. Where results are confusing or contradictory, experts should be able to help you sort things out and access what is most significant and believable.”

    FWIW, I am not a medical professional and share lay-opinions and info based on personal experience and interpretation of research studies, as do other CSN members. Research data and opinion vary greatly among medical professionals and non-professionals alike. Therefore, different experiences, perspectives and dissenting discussions are to be expected on the forum, even encouraged, as long as they are respectful, civil and do not violate the CSN terms and conditions that we agreed to when we joined this forum.

    Thx again, Mike. All the very best.

    mrs pjd

    overtreatment undertreatment
    I had doctor visit today and had long discussion about treatment of PC. My doctor explained to me that the current thought is to do AS as much as possible. Now this becomes a non issue when there is a family history of PC. At this point the normal treatment and monitoring are for the most part employed. Another comment that was made was that most Men are still requesting the PSA screen and tests. The other point made is that the Doctors are trying to move away from overtreating. In an older male this cancer tends to remain in the prostate and for the most part this person will die from other health issues. Right now there is a study out that indicates that people as they age have 2 or more health issues that can effect life span. My doctor directed me to a web site called PUBMED, google should find it. She uses it it has a lot of good information just passing along