Active Surveillance

I was diagnosed in July, 2014.  Gleason 3+3, only one core 5% positive, PSA of 3.9 (accelerated from 0.7 two years ago which led to the biopsy).  Have been doing research and thought surgery was my best option and have had three surgery dates set and cancelled for various reasons (fate?).  After two more opinions and checking the active-surveillance.com website, I now feel this is the best way to go for me for the short term.

I am looking for any stories/encouragement to help me continue down this road.  I am 58 and very active...six days a week exercise, eat healthy, no smoking or drinking.  Advice?  Opinions?

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Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    "Active Surveillance with delayed treatment if necessary"

    Based on the information that you posted, you are a very good candidate to pursue an Active Surveillance protocol. 

    I suggest the following: 

    Have a second opinion on the results of your pathology by a world class pathologist so that you are not under or over treated. Determining Gleason scores are subjective, and you want an expert to review your pathology.

    Have a multiparametric  MRI with a T3 magnet. This test may show if there is extracapsular extension.

    Find a doctor, preferably at a major center of excellence who specializes in treating men diagnosed with prostate cancer with, "Active Surveillance with delayed treatment if necessary" protocol

    Click my name on the left side. If you read the "about me" page you will see informaton that I posted that is germaine to the Active Surveillance protocol, and how I have been treated.

    I have been following this protocol, six years now.

    Please feel free to ask any questions that you may have.

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

    "Active Surveillance with delayed treatment if necessary"

    Based on the information that you posted, you are a very good candidate to pursue an Active Surveillance protocol. 

    I suggest the following: 

    Have a second opinion on the results of your pathology by a world class pathologist so that you are not under or over treated. Determining Gleason scores are subjective, and you want an expert to review your pathology.

    Have a multiparametric  MRI with a T3 magnet. This test may show if there is extracapsular extension.

    Find a doctor, preferably at a major center of excellence who specializes in treating men diagnosed with prostate cancer with, "Active Surveillance with delayed treatment if necessary" protocol

    Click my name on the left side. If you read the "about me" page you will see informaton that I posted that is germaine to the Active Surveillance protocol, and how I have been treated.

    I have been following this protocol, six years now.

    Please feel free to ask any questions that you may have.

    Answer to your CSN message

    Your right, there  is a lot to learn about this beast, and the "best" treatment choice.

    Try to educate yourself. There are support groups that are local. One source is USTOO.com that has local chapters in various parts of the world that can be determined at their site....they also put out a "HOT SHEET" each month where up to date information is available...you can also look at previous issues at their site.

    Read books, Internet, etc.

    With reference to biopsies, I guess that it is a necessary evil. In my case, the doc wants to do one two years from my last one.  Different centers have different protocols...ie Johns Hopkins does one every year since they are researching this. Since I am in Southern CA., I only know the details of some of the major centers.......to be honest, I don't know anything about the technology that the major center that you are considering for AS treatment has available or the protocol that they follow. Hopefully you can share this information with us at the site, and we can provideour  LAYMAN opinions of what is available to you at this center.

    The reason that I follow an active surveillance protocol is that I am doing my best to avoid the possible major side effects of treatment to include ED and Incontinence. You mentioned that you had considered surgery. The possible side effects of surgery are very severe; for the most part greater than other active treatment choices, and the biopsies that one must undergo for active surveillance.

    By the way there are MRI guided biopsies, in real time,  where maybe 3 or 4 cores are taken. If the biopsy is a major concern to you, you may wish to consider having this type biopsy.

    You will do fine 

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Answer to your CSN message

    Your right, there  is a lot to learn about this beast, and the "best" treatment choice.

    Try to educate yourself. There are support groups that are local. One source is USTOO.com that has local chapters in various parts of the world that can be determined at their site....they also put out a "HOT SHEET" each month where up to date information is available...you can also look at previous issues at their site.

    Read books, Internet, etc.

    With reference to biopsies, I guess that it is a necessary evil. In my case, the doc wants to do one two years from my last one.  Different centers have different protocols...ie Johns Hopkins does one every year since they are researching this. Since I am in Southern CA., I only know the details of some of the major centers.......to be honest, I don't know anything about the technology that the major center that you are considering for AS treatment has available or the protocol that they follow. Hopefully you can share this information with us at the site, and we can provideour  LAYMAN opinions of what is available to you at this center.

    The reason that I follow an active surveillance protocol is that I am doing my best to avoid the possible major side effects of treatment to include ED and Incontinence. You mentioned that you had considered surgery. The possible side effects of surgery are very severe; for the most part greater than other active treatment choices, and the biopsies that one must undergo for active surveillance.

    By the way there are MRI guided biopsies, in real time,  where maybe 3 or 4 cores are taken. If the biopsy is a major concern to you, you may wish to consider having this type biopsy.

    You will do fine 

    Fate ? Probably

    Barrytips

    It looks like that you have a low aggressive case, according to the diagnosis you have shared above. Hopeful is very knowledgeable about AS protocols and his advice is something to consider deeply. You did not say your age or commented about any other past illness but I believe you are in good shape, and did well in your choice. AS is an active monitoring regimen, that requires you to follow constant testing. The biopsy programme, every two years, I think (?), seems to be the worse but nowadays there have been significant improvements in image studies (equipments and technology) that may replace soon the traditional needle sampling. In this forum you can find the stories of many who have chosen the same.

    When confronting cancer, finding a quick fix is the “motto”, but treatments for PCa are risky and do not assure us the peace of mind we so much would be expecting. The side effects may become permanent nasty “guests”. If the situation permits, it is wise to try in postponing any therapy to the timing we think it most appropriate. We never know for sure if such time becomes ever necessary.

    I wish you luck in your journey.

    Welcome to the board.

    VGama image

  • barrytips52
    barrytips52 Member Posts: 8
    AS

    Thanks for the input, very valuable and reassuring.  Waiting to get my PSA result today, will be the first test since the original diagnosis.  Sort of ambivalent about the PSA tests based on my research, but hoping it is stable or decreasing.  Been doing a lot of reading on anti-cancer strategies, looking for ways to give me the best chance to harness the growth of the disease.  I live a pretty clean lifestyle now so it might be tough. 

    Commited to AS unless the next biopsy shows something unusual, scheduled for July.  Duke protocol apparently will allow three years till the next one if I get a similar result (one core 5%, 3+3).

  • barrytips52
    barrytips52 Member Posts: 8

    Well, got my PSA back and it went from 3.9 to 7.9 in six months.  Will be waiting for a call from the doc today.  I know there are a lot of factors that can impact a PSA, so will not go into panic mode until we learn more...anyone have insight on this rapid acceleration.

  • Beau2
    Beau2 Member Posts: 261
    Big increase in PSA

    With that big of a jump in PSA, I would be suspicious of an infection. You might want to ask your Uro about the possibility of an infection and maybe taking some antibiotics .... give the antibiotics a chance to work and then redo the PSA test.

    With a previous biopsy of a G6, I feel you have plenty of time for testing and should stay on AS for now. You can make decisions about going off of AS and doing active treatment in the future.

  • barrytips52
    barrytips52 Member Posts: 8

    Thanks Guys.  Found this little nugget doing some research.  Within twelve hours of my PSA test I had completed two workouts.  One a rigorous Bikram Yoga class that is 90 minutes of yoga in a 105 degree room, I sweat out about 5 pounds of water.  Then the morning of the 8:30AM test, I did my 30 minute regular aerobic workout at home.  And thinking back to last summer, I did a Bikram workout the morning of that test as well which yielded the 3.9 PSA.

    I will be curious how the doc interprets the test given this information.  I never gave any thought to my exercise routine prior to testing...a rookie!

    The Evidence

    A 1996 study by Gerhard Oremek et. al. reported by Clinical Chemistry Laboratories, looked at the effect of exercise on the PSA levels of 301 healthy subjects. Fifteen minutes of exercise was found to increase PSA levels by up to threefold. This increase suggests that exercise does have an elevating effect on PSA levels.

    Who Should Be Tested

    All men over 50 years old should be tested, and those with increased risk of prostate cancer such as African Americans and men with a family history of prostate cancer should be tested from 40 to 45 years old, according to recommendations from the American Urological Society, the American Cancer Society and the American College of Physicians. Before going in for testing, however, keep in mind that one of the factors that may cause elevated PSA levels is exercise.

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

    AS

    Thanks for the input, very valuable and reassuring.  Waiting to get my PSA result today, will be the first test since the original diagnosis.  Sort of ambivalent about the PSA tests based on my research, but hoping it is stable or decreasing.  Been doing a lot of reading on anti-cancer strategies, looking for ways to give me the best chance to harness the growth of the disease.  I live a pretty clean lifestyle now so it might be tough. 

    Commited to AS unless the next biopsy shows something unusual, scheduled for July.  Duke protocol apparently will allow three years till the next one if I get a similar result (one core 5%, 3+3).

    Protocol

    The biopsy and protocol at Duke

    At Duke what type biopsy will you have? Will it be random as the last one you had, or will it be directed, that is will there be an multiparametric MRI with a T3 magnet, that will determine suspicious lesions, rank them by aggressiveness, then samples taken of those suspicious lesions with a 3 dimension biopsy machine or again with the MRI machine? 

    How often will then want to monitor you? Are they recommending other diagnostic tests? ie . genomic gene test.

    PSA doubling within six months. I agree with SSW and Beau that this is of concern. You may wish to speak with with doc about determining if this an infection, there are various drugs that you can take over a month or so, one drug is Cipro. Note: doing this makes the drug less effective in preventing infections during biopsies.

    MRI ...when I was first diagnosed, the MRI guided biopsy did not exist, so at that time, I had a MRI with a Tesla 1.5 magnet. The 3.0 Magnet was first being made available for clinical use. To improve the accuracy of the test, I had a spectroscopy along with the MRI. The doctor wanted to see what was going on, if there was extracapsular extension, how much cancer and where in the prostate.

    Here is a source for a the spectroscopy (Magnetic Resonance Sprectroscopy)

    http://www.ncbi.nlm.nih.gov/pubmed/16148633

    When I entered the program where an MRI was done first to determine suspicious lesions that need to be targeted, I only have had a Multi-parametric MRI with a more powerful Tesla 3.0....then a three dimensional biopsy..Since the biopsy machine locks into the MRI results, the spectrocopy is not required for this procedure. I have not had an MRS in the last five years.....( Since the MRI's use more powerful magnets now-a-days I think that in general the spectroscopy is done less often.) 

     

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

    Thanks Guys.  Found this little nugget doing some research.  Within twelve hours of my PSA test I had completed two workouts.  One a rigorous Bikram Yoga class that is 90 minutes of yoga in a 105 degree room, I sweat out about 5 pounds of water.  Then the morning of the 8:30AM test, I did my 30 minute regular aerobic workout at home.  And thinking back to last summer, I did a Bikram workout the morning of that test as well which yielded the 3.9 PSA.

    I will be curious how the doc interprets the test given this information.  I never gave any thought to my exercise routine prior to testing...a rookie!

    The Evidence

    A 1996 study by Gerhard Oremek et. al. reported by Clinical Chemistry Laboratories, looked at the effect of exercise on the PSA levels of 301 healthy subjects. Fifteen minutes of exercise was found to increase PSA levels by up to threefold. This increase suggests that exercise does have an elevating effect on PSA levels.

    Who Should Be Tested

    All men over 50 years old should be tested, and those with increased risk of prostate cancer such as African Americans and men with a family history of prostate cancer should be tested from 40 to 45 years old, according to recommendations from the American Urological Society, the American Cancer Society and the American College of Physicians. Before going in for testing, however, keep in mind that one of the factors that may cause elevated PSA levels is exercise.

    As you realize lots of things

    As you realize lots of things can cause PSA to rise, sex before the blood test, bike riding and some other exercise, a digital rectal exam before the blood test, and even a hard stool...an infection.  

    I suggest that you have a free PSA and a multi-parametric MRI as soon as possible so you have an idea of what is going on........at that point you may wish to treat for an infection....at any rate speak to your doc about this.

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member

    Well, got my PSA back and it went from 3.9 to 7.9 in six months.  Will be waiting for a call from the doc today.  I know there are a lot of factors that can impact a PSA, so will not go into panic mode until we learn more...anyone have insight on this rapid acceleration.

    Could be a lot of reasons for your PSA to rise from 3.9 to 7.9 (a doubling) in the last 6 months BUT it's a huge RED FLAG! 

    Don't think I'd wait another 6 months to take the next PSA test; 3 months at most.  If it rises significantly again, I also don't think AS would make sense as a long term treatment plan and I'd start considering other treatment options, particuarly Cyberknife which you are still eligible for.  In the meantime, I'd also looking into getting an MRI/MRSI spectroscopic scan w/Tesla magnet (which I believe is the same thing Hopeful is talkng about -- we just use different names) to determine the exact location of the cancer w/in and/or beyond the prostate.

    Good luck!!

     

     

     

  • simonh
    simonh Member Posts: 1
    active surveillance

    I have just been diagnosed with Prostate cancer last week and was considering active surveillance --my psa is 3.2 --gleason grade 3  in 10% right side --my age is 47 with urinary problems and the following medical conditions --Severe Asthma --Hypothyridism--Costochondritis--stomach ulcer and possible Seronegative Inflammatory Arthritis --I am 5ft 6ins and 17st so very overweight ---trying to decide what is my best option going forward --any advice would be appreciated--thanks

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    simonh said:

    active surveillance

    I have just been diagnosed with Prostate cancer last week and was considering active surveillance --my psa is 3.2 --gleason grade 3  in 10% right side --my age is 47 with urinary problems and the following medical conditions --Severe Asthma --Hypothyridism--Costochondritis--stomach ulcer and possible Seronegative Inflammatory Arthritis --I am 5ft 6ins and 17st so very overweight ---trying to decide what is my best option going forward --any advice would be appreciated--thanks

    A thought or two

    Simonh,

    The three classic choices for non-metastatic PCa are of course A/S, radiation, and surgical removal.

    You are pretty young for a positive diagnosis. The cancer will do nothng but get worse over time, and you will at some point have to look toward eradication.  Very likely you could do well for some time on A/S, but it is not a lifetime option for a guy 47 years old.   IMRT or better-technology radiation would probably get you into complete remission, but radiation can be counter-indicated when there is urinary flow restriction. 

    I would be thinking surgical removal, based on the small amount of information provided. You have a number of medical issuses, but most, or all, of them would not prohibit surgery, where the doctors are most worried about heart problems and diabetes. Asthma can be controlled and worked around in the operating room, and arthritis is irrelevant in terms of whether to get surgery or not. The older one gets, the harder surgery is to tolerate, and it has side-effects.

    So, the issue is primarily: "How long do you want to wait before working toward curative effect ?" Only you can decide that. Since you have had a biopsy, you obviously have a urologist already. Make him explain what he would do, and why.  Then, go see a radiation oncologist and let him make his case. Then, consider everything and choose.

    I had exactly these same issues to sort out after getting a positive biopsy several months ago (I am 58).  I came home from the hospital TODAY, following surgical removal, which was a decision that took a long time to make.

    max

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    simonh said:

    active surveillance

    I have just been diagnosed with Prostate cancer last week and was considering active surveillance --my psa is 3.2 --gleason grade 3  in 10% right side --my age is 47 with urinary problems and the following medical conditions --Severe Asthma --Hypothyridism--Costochondritis--stomach ulcer and possible Seronegative Inflammatory Arthritis --I am 5ft 6ins and 17st so very overweight ---trying to decide what is my best option going forward --any advice would be appreciated--thanks

    .

    .

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    simonh said:

    active surveillance

    I have just been diagnosed with Prostate cancer last week and was considering active surveillance --my psa is 3.2 --gleason grade 3  in 10% right side --my age is 47 with urinary problems and the following medical conditions --Severe Asthma --Hypothyridism--Costochondritis--stomach ulcer and possible Seronegative Inflammatory Arthritis --I am 5ft 6ins and 17st so very overweight ---trying to decide what is my best option going forward --any advice would be appreciated--thanks

    It is important to know where

    It is important to know where you stand before making a treatment decision.

    What led to you getting a biopsy?

    What is the history of your PSA's?

    Did the Digital Rectal Exam (finger wave) indicate any abnormality?

    Any family history of Prostate Cancer?

    In your biopsy, how many cores were taken?

    In the core that was positive, you mentioned a gleason grade 3....the Gleason comprises two numbers, so it can be a 3+3=6 or a 3+4=7. or a 3+5=8...what is yours?.....Are there any other cores that were positive?

    Enrollment in an Active Surveillance program is generally not dependent on age...where I am treated there is man who was enrolled at age 35.....About 75 percent of us who are in an Active Surveillance program, do not experience progression of disease.

    There are additional more sophisticated tests and protocols that you can do to determine what is going on that are advisable to do....please read some of the comments to the person whose thread this is, for more information. Please start another thread with your answers, so  posts can be customized to you, and your concerns.

    Best,

     

  • barrytips52
    barrytips52 Member Posts: 8

    It is important to know where

    It is important to know where you stand before making a treatment decision.

    What led to you getting a biopsy?

    What is the history of your PSA's?

    Did the Digital Rectal Exam (finger wave) indicate any abnormality?

    Any family history of Prostate Cancer?

    In your biopsy, how many cores were taken?

    In the core that was positive, you mentioned a gleason grade 3....the Gleason comprises two numbers, so it can be a 3+3=6 or a 3+4=7. or a 3+5=8...what is yours?.....Are there any other cores that were positive?

    Enrollment in an Active Surveillance program is generally not dependent on age...where I am treated there is man who was enrolled at age 35.....About 75 percent of us who are in an Active Surveillance program, do not experience progression of disease.

    There are additional more sophisticated tests and protocols that you can do to determine what is going on that are advisable to do....please read some of the comments to the person whose thread this is, for more information. Please start another thread with your answers, so  posts can be customized to you, and your concerns.

    Best,

     

    Progression

    About 75 percent of us who are in an Active Surveillance program, do not experience progression of disease.

    Happy to see that comment from hopeful and optimistic.  Diagnosed last July and in first year of surveillance.  I am also very hopeful, thinking I can stop the progression of low grade, low volume cancer.  Have made some dietary changes (already lived pretty clean, so not much to do) that include fully eliminating dairy (went to soy and almond based products), fully eliminating white starches and refined sugar (one dessert a week, sure look forward to that Saturday night!), and continuing to focus on whole foods.  Easy adjustments for me.  Exercise regimen has always been in place, its 6 days a week with Sunday rest.

    Noted above that my PSA went from 3.9 to 7.9 on last test...and yes, I am being treated for an infection as some commenters suspected could have caused the elevation.  Will get another PSA next month just to see what normalizes, and will make sure to refrain from sex AND exercise a couple days befor the test.  Curious to see if the exercise was a factor as noted in one study.  At the very least,  docs should be directing patients to refrain from sexual activity before a PSA test, seems consistent in the literature that activity can cause elevation...therefore leading to concern, therefore leading to possible unnecessary biopsy.

    A lot of work needs to be done in diagnostic research for this disease.  The more I read, the more I am convinced that a lot of guys are being overtreated.  And I also believe we have a chance to control this with some lifestyle adjustments...hoping to prove that myself.

     

  • MCinNC
    MCinNC Member Posts: 40 Member

    Progression

    About 75 percent of us who are in an Active Surveillance program, do not experience progression of disease.

    Happy to see that comment from hopeful and optimistic.  Diagnosed last July and in first year of surveillance.  I am also very hopeful, thinking I can stop the progression of low grade, low volume cancer.  Have made some dietary changes (already lived pretty clean, so not much to do) that include fully eliminating dairy (went to soy and almond based products), fully eliminating white starches and refined sugar (one dessert a week, sure look forward to that Saturday night!), and continuing to focus on whole foods.  Easy adjustments for me.  Exercise regimen has always been in place, its 6 days a week with Sunday rest.

    Noted above that my PSA went from 3.9 to 7.9 on last test...and yes, I am being treated for an infection as some commenters suspected could have caused the elevation.  Will get another PSA next month just to see what normalizes, and will make sure to refrain from sex AND exercise a couple days befor the test.  Curious to see if the exercise was a factor as noted in one study.  At the very least,  docs should be directing patients to refrain from sexual activity before a PSA test, seems consistent in the literature that activity can cause elevation...therefore leading to concern, therefore leading to possible unnecessary biopsy.

    A lot of work needs to be done in diagnostic research for this disease.  The more I read, the more I am convinced that a lot of guys are being overtreated.  And I also believe we have a chance to control this with some lifestyle adjustments...hoping to prove that myself.

     

    PSAs

    Hi Barry,

    I can vouch for the proposition that PSAs are affected by your activities.  I had some fluctuating PSAs prior to my diagnosis in 2010 that eventually led to getting a biopsy.  But, my urologist back then assured me that no activities before the test affected the result, including exercise or sex.  He was wrong, but in retrospect, in my case it was probably a good thing to get that biopsy and the early diagnosis.  So, it worked out.

    Anyway, I would certainly recommend curtailing all exercise or strenuous activities, and all sexual activities, for at least 48 hours before the blood is drawn.  No need to add variables to the process that may cause changes in the PSA results that are totally unrelated to cancer. 

    I will say that the fluctuations I experienced were not of the magnitude you have - 3.9 to 7.9.  That does sound like infection would be the more likely culprit.

    My decision to begin AS in 2010 was not unlike yours.  Here is a link to the post describing my thinking... 

    http://csn.cancer.org/node/203437

    Best wishes,

    Mac

  • MCinNC
    MCinNC Member Posts: 40 Member

    AS

    Thanks for the input, very valuable and reassuring.  Waiting to get my PSA result today, will be the first test since the original diagnosis.  Sort of ambivalent about the PSA tests based on my research, but hoping it is stable or decreasing.  Been doing a lot of reading on anti-cancer strategies, looking for ways to give me the best chance to harness the growth of the disease.  I live a pretty clean lifestyle now so it might be tough. 

    Commited to AS unless the next biopsy shows something unusual, scheduled for July.  Duke protocol apparently will allow three years till the next one if I get a similar result (one core 5%, 3+3).

    AS protocol

    Barry,  

    I'm sure that there are different views as to the details of AS protocols.  You mentioned Duke's protocol may allow a three year window between biopsies with results of one core, 5%, and 3+3.  

    I'd be careful with that.  I had three biopsies over 2.5 years that had results identical to yours... one core positive, 5% involvement, G6.  Exactly the same results in 3 separate biopsies.  My UNC dr upped the interval to 2 years for the next biopsy.  During that time i had stable PSAs (Dec '14 was 2.3) and dormal DREs.  Yet, the recent biopsy involved 3 cores, 10-15%, and 3+4.  

    So, based on my experience I'd be really wary of a 36 month interval regardless of the stated reasons for it.  There was no logical basis to expect a change in my pathology, yet there it was.

    Just something else to think about...

    Mac

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    MCinNC said:

    PSAs

    Hi Barry,

    I can vouch for the proposition that PSAs are affected by your activities.  I had some fluctuating PSAs prior to my diagnosis in 2010 that eventually led to getting a biopsy.  But, my urologist back then assured me that no activities before the test affected the result, including exercise or sex.  He was wrong, but in retrospect, in my case it was probably a good thing to get that biopsy and the early diagnosis.  So, it worked out.

    Anyway, I would certainly recommend curtailing all exercise or strenuous activities, and all sexual activities, for at least 48 hours before the blood is drawn.  No need to add variables to the process that may cause changes in the PSA results that are totally unrelated to cancer. 

    I will say that the fluctuations I experienced were not of the magnitude you have - 3.9 to 7.9.  That does sound like infection would be the more likely culprit.

    My decision to begin AS in 2010 was not unlike yours.  Here is a link to the post describing my thinking... 

    http://csn.cancer.org/node/203437

    Best wishes,

    Mac

    Barry, your question and our answers for edification of all

    "Curious about your note regarding "75% of those in AS are not seeing any disease progression."  Are you seeing anyone who is experiencing improvement, ie reduction in disease volume from biopsies or reductions in PSA results?  Going to get another PSA next month to attempt to "normalize" my number.  Will make sure I do not exercise a day or two prior and obviously no sexual activity. 

    Just finished a round of antibiotics for a urinary tract infection that may have also caused my big bump from 3.9 to 7.9 in six months.  Different labs as well.  So paying for one myself just to see what happens.  I found one article online of a guy who had nearly the same diagnosis as mine who was able to get to undetectable levels on a biopsy using supplements and other diet changes.  My diet was pretty clean already but have made even more of a concerted effort to eliminate all dairy, white starches, and refined sugar.  Have added pomegrante juice with breakfast, green tea mid morning, eating more kale and other cruciferouse veggies, and keeping my exericse routine intact.  My goal is to keep it where it is...3+3, 1/12, 5% in that one positive core."

     

     

     a twelve core random biopsy is not extremely effective......a cancer may or may not be found.....so for example if one finds a 3+3=6, 5 percent involvement as in your case....the next series of random biopsies may or may not detect a cancer....in approximately 25 percent of cases a more aggressive cancer may be found that is already in the prostate or might develop, so active treatment will be required.

     

    A targeted multiparametric MRI biopsy is able to better determine cancers, so that the need for  treatment  is determined sooner than later, thus increasing the effectiveness  of active treatment if needed, and if cancers are not determined, you will have more confidence in the AS protocol.

    PSA Since each lab calibrates their machine slightly differently , it is best to stay with one lab so you can better evaluate the trend.....remember the psa is a trend only, the biopsy is the critical information.

     

    "I found one article online of a guy who had nearly the same diagnosis as mine who was able to get to undetectable levels on a biopsy using supplements and other diet changes"

    Sorry but the cancer does not go away....the biopsy simply did not determine a cancer(which is astill a good thing).

     

    As far as diet and life style , many of us have made changes to have a heart healthy life style which is prostate healthy

    Suggest you read the book, The China Study by T. Colin Campbell   or see the dvd ForksoverKnives  avalaible at the library or net flicks...there is a doc Mark Moyad who is a prostate cancer nutritionist, an expert....I suggest that you read his books.  Also Dean ornish did a small study , measuring the effects of veggie diet, lower stress and exercise on PSA, and noted a reduction in PSA.

    Some docs recommend a veggie diet,while others a medterainian diet....I personally do not eat meat or dairy, but some fish. Idrink green tea, spice include tumeric, allspice , cinnimum. I eat tomato sauces and other sources of lypopene.....I eat lots of veggies. I take a D3

    ..............

    Basically these diets are heart healthy, and we who have prostate cancers are more likely to die from heart disease than PCa,,,,,,,so its a great idea to eat healthy.

     

     

     

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

    Barry, your question and our answers for edification of all

    "Curious about your note regarding "75% of those in AS are not seeing any disease progression."  Are you seeing anyone who is experiencing improvement, ie reduction in disease volume from biopsies or reductions in PSA results?  Going to get another PSA next month to attempt to "normalize" my number.  Will make sure I do not exercise a day or two prior and obviously no sexual activity. 

    Just finished a round of antibiotics for a urinary tract infection that may have also caused my big bump from 3.9 to 7.9 in six months.  Different labs as well.  So paying for one myself just to see what happens.  I found one article online of a guy who had nearly the same diagnosis as mine who was able to get to undetectable levels on a biopsy using supplements and other diet changes.  My diet was pretty clean already but have made even more of a concerted effort to eliminate all dairy, white starches, and refined sugar.  Have added pomegrante juice with breakfast, green tea mid morning, eating more kale and other cruciferouse veggies, and keeping my exericse routine intact.  My goal is to keep it where it is...3+3, 1/12, 5% in that one positive core."

     

     

     a twelve core random biopsy is not extremely effective......a cancer may or may not be found.....so for example if one finds a 3+3=6, 5 percent involvement as in your case....the next series of random biopsies may or may not detect a cancer....in approximately 25 percent of cases a more aggressive cancer may be found that is already in the prostate or might develop, so active treatment will be required.

     

    A targeted multiparametric MRI biopsy is able to better determine cancers, so that the need for  treatment  is determined sooner than later, thus increasing the effectiveness  of active treatment if needed, and if cancers are not determined, you will have more confidence in the AS protocol.

    PSA Since each lab calibrates their machine slightly differently , it is best to stay with one lab so you can better evaluate the trend.....remember the psa is a trend only, the biopsy is the critical information.

     

    "I found one article online of a guy who had nearly the same diagnosis as mine who was able to get to undetectable levels on a biopsy using supplements and other diet changes"

    Sorry but the cancer does not go away....the biopsy simply did not determine a cancer(which is astill a good thing).

     

    As far as diet and life style , many of us have made changes to have a heart healthy life style which is prostate healthy

    Suggest you read the book, The China Study by T. Colin Campbell   or see the dvd ForksoverKnives  avalaible at the library or net flicks...there is a doc Mark Moyad who is a prostate cancer nutritionist, an expert....I suggest that you read his books.  Also Dean ornish did a small study , measuring the effects of veggie diet, lower stress and exercise on PSA, and noted a reduction in PSA.

    Some docs recommend a veggie diet,while others a medterainian diet....I personally do not eat meat or dairy, but some fish. Idrink green tea, spice include tumeric, allspice , cinnimum. I eat tomato sauces and other sources of lypopene.....I eat lots of veggies. I take a D3

    ..............

    Basically these diets are heart healthy, and we who have prostate cancers are more likely to die from heart disease than PCa,,,,,,,so its a great idea to eat healthy.

     

     

     

    your csn email question to me, and my answer.

     I keep seeing you refer to this technique so I found this study.  Have asked Duke U if they use this approach or the typical TRUS method.

     

    http://bmjopen.bmj.com/content/4/6/e004895.full

     

     

    Barry,

    As you can see a multiparametric MRI T3 followed by a biopsy is superior to a random trus biopsy. Additionally the multiparametric can show if there is extracapsular extension, that is if the cancer is outside the capusule

    Well, what method does Duke use?

    Best

  • barrytips52
    barrytips52 Member Posts: 8
    Thought this was interesting

    Vitamin D May Keep Low-Risk Prostate Cancers in Check

    March 25, 2015

    Vitamin D supplementation after a prostate biopsy reduces inflammation and might even obviate the need for eventual prostatectomy or radiation therapy by keeping low-grade tumors from becoming aggressive, new research suggests.

    "We don't know yet whether vitamin D treats or prevents prostate cancer," lead author Bruce Hollis, PhD, from Medical University of South Carolina in Charleston, said in a statement.

    "At the minimum, what it may do is keep lower-grade cancers from going ballistic," he said.

    The study was presented at the 249th National Meeting & Exposition of the American Chemical Society in Denver.

    In a small pilot study, Dr Hollis and his colleagues investigated the effects of vitamin D supplementation on prostate tissue specimens. They assigned 37 men scheduled to undergo elective prostatectomies to either vitamin D 4000 IU/day or placebo for 2 months before surgery.

    It is the standard of care to leave an interval of 2 months between initial biopsy and prostatectomy so that the inflammation caused by the biopsy procedure has time to resolve.

    After prostatectomy, the glands were evaluated. Membrane changes and differences in gene expression were compared in the supplemented and unsupplemented men.

    "We saw major changes in membrane lipids in glands from men who had taken vitamin D," Dr Hollis said during a press briefing.

    "More important," he added, "we saw some really incredible molecular changes, and the number 1 gene that showed up on the heat map was growth differentiation factor 15 [GDF-15]," he said.

    "Treatment with vitamin D, at 4000 IU per day, turns GDF-15 gene expression up, and that inhibits inflammatory processes," he explained.

    In a previous study, a small group of men diagnosed with low-risk prostate cancer received 4000 IU of vitamin D supplementation for 1 year (J Clin Endocrinol Metab. 2012;97:2315-2324). At 1-year rebiopsy, 55% of the men had a decrease in the number of positive biopsy cores or in Gleason score.

    "When you look at this from historical standards for age-matched controls within the same practice, about 90% of tumors get worse or stay the same," Dr Hollis observed, "so this really was a pretty remarkable finding."

    The Medical University of South Carolina is now in the process of conducting a randomized controlled trial of men diagnosed with early-stage low-risk prostate cancer, defined as a serum prostatic-specific antigen (PSA) level of 10 ng/mL or less and a Gleason score of 6 or less.

    All subjects will be monitored with active surveillance for at least 1 year before definitive treatment is decided on.

    The primary objective will be to test the hypothesis that vitamin D 4000 IU/day for 12 months will result in a decrease in serum PSA levels in a significant number of men.

    A secondary objective will be to compare prostate biopsy specimens before and after vitamin D supplementation.

    Inflammation is thought to drive many cancers, including those of the prostate, breast, and colon, Dr Hollis pointed out.

    During his presentation, he described a study in which overall survival was 35% better in metastatic colorectal cancer patients with plasma 25-hydroxyvitamin D levels above 24.1 ng/mL than in those with levels from 2.2 to 10.8 ng/mL (hazard ratio, 0.65; 95% confidence interval, 0.51 - 0.83) (Cancer Epidemiol Biomarkers Prev. 2014;23:1628-1637).

    Having treated thousands of patients with vitamin D himself, Dr Hollis reported that the number of adverse events he has seen with vitamin D is exactly none.

    "We had a reluctant urology division that eventually agreed to cooperate in our first study," Dr Hollis told Medscape Medical News.

    At the end of that study, vitamin D supplementation became the standard of care in our urology division, "so yes, doctors should be recommending vitamin D for men with low-grade prostate cancer," he said.

    Supplementation Not Supported by Data

    This study adds to the already-existing literature supporting the beneficial effect of vitamin D supplementation in the setting of prostate cancer, said Marc Garnick, MD, from the Beth Israel Deaconess Medical Center and professor of medicine at Harvard Medical School in Boston, in an email to Medscape Medical News.

    Vitamin D "joins a multitude of other vitamins and dietary supplements" that have been shown to benefit men with prostate cancer. "As such, it deserves additional, well-controlled, adequately powered studies with appropriate follow-up and patient numbers that allow for meaningful conclusions," Dr Garnick stated.

    He cautioned, however, that a sample of 37 men exposed to supplementation for 2 months is "entirely inadequate" for any conclusions other than hypotheses to be generated, and in no way enables a "practice-changing" policy.

    He also criticized the "overly enthusiastic interpretation" of this small dataset in the absence of additional rigorous study.

    "The medical world and the patients we serve have too often been inappropriately excited about preliminary findings, only to be disappointed and possibly harmed by practices that are premature and not fully tested," Dr Garnick explained.

    He pointed to the disappointing results with soy protein, vitamin E, and selenium supplementation, none of which ever proved to be as helpful as originally touted.

    And he mentioned the widely studied finasteride and dutasteride, which were thought to prevent prostate cancer from developing. After thousands of patients, years of study, and rigorous analyses, it was determined that these drugs are of no benefit and could, in fact, be harmful in this setting.

    "In my opinion, for a physician practice to embrace the use of vitamin D supplementation as the 'standard of care' outside the context of a clinical research study is not supported by the information at hand," Dr Garnick said.

    "Moreover," he added, "the alteration of behavior that the current study addresses — that of a small cohort of low-risk prostate cancer patients — would take more than a decade of study, if not longer, to see if any benefit (or harm) was present."

    This study was funded by the Gateway for Cancer Research, the Department of Veterans Affairs, the National Institutes of Health, and the South Caroline Clinical and Translational Research Institute. Dr Hollis has disclosed no relevant financial relationships.

    249th National Meeting & Exposition of the American Chemical Society. Abstract AGFD 11. Presented March 22, 2015.

     

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