Is Active Surveillance an option?

SubDenis
SubDenis Member Posts: 130 Member
in Prostate Cancer #1

Ok, two weeks into this journey; read many books, articles, and posts by others.  I am 65 years old, excellent health, diagnosed PC Gleason 6, 3-4 positive cores, all less than 30%.

The reason for saying 3 to four cores, is the urologist wasn't sure if there was overlap in the lesion area. This along with other things caused me to get a new doc.  He wasn't sure how many cores were taken. 

Selection for AS seems to be driven by the number of cores, in part and many citations to less than 3 and a few less than 4.  

 

Love to hear from folks on AS and your experience with choosing this approach. I meet with my new doc in a bit over a week and want to be well armed with my research. 

 

Thanks, Denis

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    edited August 2017 #2
    There has been response on your original thread

    ....best for you to stay on one thread............best 

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #3
    Option?

    Hi,

     " I am 65 years old, excellent health, diagnosed PC Gleason 6, 3-4 positive cores, all less than 30%." you still have time to formulate your treatment plan.  If you were 85 yrs old I would say that AS could be good plan but at 65 you still should have a lot of livin in ya.  If it was me I would deal with the Pca and put it to rest so you can get on with living your life. If the Pca is close to the outside of the prostate or any other organs it should be even more incentive to get going on treament.  The cancer will not go away on it's own, it will only grow.  But how fast and how invasive is the gambling point.   Just my 2c worth...........................

    Dave 3+4

  • GeorgeG
    GeorgeG Member Posts: 152
    edited August 2017 #4
    The fact that if you live to

    The fact that if you live to age 85, you will have a very high chance of dying with but not of prostate cancer says that active AS works in appropriate cases. Most 85 year olds are on AS by definition. Now, that does not mean that is a good idea in every case and it also does not mean that any given individual is wired for leaving cancer in their body and being relaxed about it. I don't care if I have cancer left in my body if the overwhelming odds are that it won't harm me. We have had my wife's thyroid cancer on AS for almost ten years and we are fine with that. I have another friend who said "I want that sucker out of there" in response to his biopsy and siad that he would not do AS under ANY circumstances. My point is this: part of the equation is what makes you more comfortable. Get any identified cancer out of your body regardless of the odds of disease specific mortality odds and regardless of the risks and side effects of treatment or do you want to avoid the possibilities of side effects or a poor outcome if the odds are high that this will not take you. The second thing is to asess the actual risks with as much spin applied for your specific situation. The MSK charts give you the overall odds and then your doctors can help you apply spin on the everages by considering your specific competing mortality risks such as heart or blood sugar. AS is becoming better managed with better selection criteria and better monitoring triggers. I would have done AS in a minute if I was a candidate but I was not. If it had applied to me I would only have done it if I had access to the newest imaging and high end doctors and facilities that were up to speed on the latest. If everybody did a high resolution full body scan there would be a lot of people loosing sleep at night because there is much to be found and discused with older guys. I get a whole dialouge after my scans. We reeally need a new vocabulary when it come to lesions found on scans and biopsies and we should stop calling indolent, low risk "things" cancer as ith older people this conjures up images of 4 weeks to live from decades past. Yesterday at my wifes follow up we were being shown 3 x 5 mm nodules that could not be imaged ten years ago. We opted for another six months of AS.

    If you are considering AS make sure that they are talking PSA baseline, velocity, newest imaging, MSK charts, the lastest study data, frequency of monitoring. My wife was shuffled out of her first endo appt saying her thyroid was nothing to worry about. We didn't buy it because there was no rigor or confidence. We went to Mayo and her considerable cancer was properly identified and removed by a top surgeon in the field. Now thos same competent profesionals are guiding us on AS for her recurance. 

     

    George

     

  • SubDenis
    SubDenis Member Posts: 130 Member
    #5
    hopeful and optimistic said:

    There has been response on your original thread

    ....best for you to stay on one thread............best 

    not sure I follow?

    not sure I follow?

  • jimbobaz
    jimbobaz Member Posts: 10
    edited August 2017 #6
    AS?

    What is your PSA level?  I had a PSA in the 4-5 range for over a decade.  Then it went to a 7.  Two months later it was at a 9 with a free PSA of 11%.  I had a biopsy, which found 3+3 cancer in varying low percentages in 7 cores and 3+4 in one core.  I had surgery late June 2017.  The pathology report showed 20% bilateral cancer with three separate tumors.  You may be a candidate for AS, depending on PSA dynamics.  Be sure to get the free PSA number in addition to the "regular" PSA number.

    Jim (Arizona)

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #7
    Denis

    Denis

    At your original thread, you provided particulars about your case, and was given information about Active Surveillance by myself and others. The information that was provided about AS to you was not duplicated at this thread. That information is important. At that thread you had and still have the oportunity to respond with questions if you so wish, and ask others to post with information as you did at this thread. Other information about active surveillance can be added to that thread, instead of having some information, but not inclusive at various threads.

    Additionally at this site it is very difficult to find  threads that you may wish to access in the future, so again you want to have one, inclusive thread that you can access.

    Wishing you the best

  • SubDenis
    SubDenis Member Posts: 130 Member
    #8
    jimbobaz said:

    AS?

    What is your PSA level?  I had a PSA in the 4-5 range for over a decade.  Then it went to a 7.  Two months later it was at a 9 with a free PSA of 11%.  I had a biopsy, which found 3+3 cancer in varying low percentages in 7 cores and 3+4 in one core.  I had surgery late June 2017.  The pathology report showed 20% bilateral cancer with three separate tumors.  You may be a candidate for AS, depending on PSA dynamics.  Be sure to get the free PSA number in addition to the "regular" PSA number.

    Jim (Arizona)

    My psa was 4.2 6/15 and then

    My psa was 4.2 6/15 and then 4.6 5/17.  PSA% 14.  Thanks for sharing your journey.  Denis

  • SubDenis
    SubDenis Member Posts: 130 Member
    #9
    hopeful and optimistic said:

    Denis

    Denis

    At your original thread, you provided particulars about your case, and was given information about Active Surveillance by myself and others. The information that was provided about AS to you was not duplicated at this thread. That information is important. At that thread you had and still have the oportunity to respond with questions if you so wish, and ask others to post with information as you did at this thread. Other information about active surveillance can be added to that thread, instead of having some information, but not inclusive at various threads.

    Additionally at this site it is very difficult to find  threads that you may wish to access in the future, so again you want to have one, inclusive thread that you can access.

    Wishing you the best

    My intent with the new post

    My intent with the new post was to drill down into one specific subject and seek folks experience with AS, not the whole of PC treatments. Denis

  • jimbobaz
    jimbobaz Member Posts: 10
    #10
    If it was me...

     The free PSA number of 14% merits attention, but based on your rate of PSA increase (.4 in two years) and relatively low PSA numbers, I would opt for continued AS with PSA tests every 6 months at this point if it was me.

  • SubDenis
    SubDenis Member Posts: 130 Member
    #11
    jimbobaz said:

    If it was me...

     The free PSA number of 14% merits attention, but based on your rate of PSA increase (.4 in two years) and relatively low PSA numbers, I would opt for continued AS with PSA tests every 6 months at this point if it was me.

    Thanks, Jim.  I meet with new

    Thanks, Jim.  I meet with new doc in a week.  Yale has a multiparametric MRI, that I hope to help confirm current stage and supports the AS choice.  Denis

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    edited August 2017 #12
    The number of cores is changing

    The original reseach that led to the guidelines of no more than two positive cores came from biopsies that only took six cores. So, in theory, the rule could be said to be no more than one-third of the cores taken could be positive. So, three cores may not be an issue. 

    To be on AS, you would need a confirmatory biopsy, an MRI, and genomics tests. Also, six month followup PHI and DRE tests, plus more MRIs and biopsies as determined.

    At least, that has been my expierence.

     

     

  • GeorgeG
    GeorgeG Member Posts: 152
    #13
    One of the surgeons that I

    One of the surgeons that I met with at Mayo told me that all previous MRI technologies were not useful for assesing the extent and characteristics of the disease but that the newest MRI is useful. In particular a 3 Tesla multiparametric dynamic contrast Endo Rectal coil MRI with contrast (galodinium). He said that I was right to pass on the early call for an MRI (by my local doctor) with older technology because he said that it would have been of little value.

    In reading some of the Yale literature they sound pretty serious about their MRI based AS approach and they use 3D MRI to perform fusion biopsies but I see no mention of the magnet technology (3T) etc. so I don't know if their capability fits into the category of best in class. I did stay in a Holiday Inn Express last night but .... 

     

    George

     

  • GeorgeG
    GeorgeG Member Posts: 152
    #14
    Tell me more about the

    Tell me more about the genomic testing guidelines please.

     

    George

     

  • SubDenis
    SubDenis Member Posts: 130 Member
    #15
    ASAdvocate said:

    The number of cores is changing

    The original reseach that led to the guidelines of no more than two positive cores came from biopsies that only took six cores. So, in theory, the rule could be said to be no more than one-third of the cores taken could be positive. So, three cores may not be an issue. 

    To be on AS, you would need a confirmatory biopsy, an MRI, and genomics tests. Also, six month followup PHI and DRE tests, plus more MRIs and biopsies as determined.

    At least, that has been my expierence.

     

     

    Thanks, I have done a fair

    Thanks, I have done a fair amount of research on the issue of the number of cores and the conservative guideline of less than 3 is the one thing that seemed in the way of AS for me.  I had 13 needle biopsies.   I was tested genetically a bunch of years ago for colon cancer gene malformation and did not have that.  This was done at Yale, so I am hoping there is some data in that work that will inform this new challenge.  Some of my research, however, seems to suggest there is not convincing evidence yet that allows this approach to be a reliable trigger event.  

    Assuming my doc is in favor of AS, I do want to discuss what would trigger intervention.  I am certain it will be a compilation of data, PSA, DRE results, MRI, and follow up biopsy.  

    I am getting more comfortable each day with the idea of living with a known cancer in me.   My feeling is some day I will have an intervention and I also believe that putting it off will allow innovation and research to enable the best possible outcomes.  

    Each day is a gift!  Denis

     

    Thanks for your input.  

  • SubDenis
    SubDenis Member Posts: 130 Member
    #16
    GeorgeG said:

    Tell me more about the

    Tell me more about the genomic testing guidelines please.

     

    George

     

    Dr. Klotz's book Active

    Dr. Klotz's book Active Surveillance for localized prostate cancer is a technical read and he discusses genomic testing in detail. Denis

  • airborne72
    airborne72 Member Posts: 303 Member
    edited August 2017 #17
    SubDenis said:

    Thanks, I have done a fair

    Thanks, I have done a fair amount of research on the issue of the number of cores and the conservative guideline of less than 3 is the one thing that seemed in the way of AS for me.  I had 13 needle biopsies.   I was tested genetically a bunch of years ago for colon cancer gene malformation and did not have that.  This was done at Yale, so I am hoping there is some data in that work that will inform this new challenge.  Some of my research, however, seems to suggest there is not convincing evidence yet that allows this approach to be a reliable trigger event.  

    Assuming my doc is in favor of AS, I do want to discuss what would trigger intervention.  I am certain it will be a compilation of data, PSA, DRE results, MRI, and follow up biopsy.  

    I am getting more comfortable each day with the idea of living with a known cancer in me.   My feeling is some day I will have an intervention and I also believe that putting it off will allow innovation and research to enable the best possible outcomes.  

    Each day is a gift!  Denis

     

    Thanks for your input.  

    Good for You!

    Denis:

    My circumstances did not allow me the option of AS.  In fact, my initial surgeon tried to intimidate me when I said that I was going to consider my options.  He said that if I waited more that a couple of weeks then he recommended HRT injections.  That panic mode did not sit well with me so I found me another surgeon who was more rational. 

    What I have learned from my experience with both prostate cancer (radical prostectomy w/o any further treatments) and rectal cancer (yesterday I completed my neoadjuvant treatment), assuming control of the situation is paramount.  YOU are the commander and all others (medical practitioners, etc.) are staff (advisors).  A good commander seeks and considers staff advice.  A good staff officer provides honest, unfiltered, and timely advice even if it is not popular.  Then the commander makes a decision and all members of the unit execute it.  This will work provided everyone understands their role and performs their duty. 

    Other than teaching you how to eat, this is one of those other things that you learned at OTS years ago.

    Everyday is a holiday and every meal is a feast.  Stand firm in your decision Denis, but always listen to wise counsel.

    Jim

  • SubDenis
    SubDenis Member Posts: 130 Member
    #18
    SubDenis said:

    Dr. Klotz's book Active

    Dr. Klotz's book Active Surveillance for localized prostate cancer is a technical read and he discusses genomic testing in detail. Denis

    Thanks I am just finishing

    Thanks I am just finishing that book, really good read.  Denis

  • SubDenis
    SubDenis Member Posts: 130 Member
    #19
    airborne72 said:

    Good for You!

    Denis:

    My circumstances did not allow me the option of AS.  In fact, my initial surgeon tried to intimidate me when I said that I was going to consider my options.  He said that if I waited more that a couple of weeks then he recommended HRT injections.  That panic mode did not sit well with me so I found me another surgeon who was more rational. 

    What I have learned from my experience with both prostate cancer (radical prostectomy w/o any further treatments) and rectal cancer (yesterday I completed my neoadjuvant treatment), assuming control of the situation is paramount.  YOU are the commander and all others (medical practitioners, etc.) are staff (advisors).  A good commander seeks and considers staff advice.  A good staff officer provides honest, unfiltered, and timely advice even if it is not popular.  Then the commander makes a decision and all members of the unit execute it.  This will work provided everyone understands their role and performs their duty. 

    Other than teaching you how to eat, this is one of those other things that you learned at OTS years ago.

    Everyday is a holiday and every meal is a feast.  Stand firm in your decision Denis, but always listen to wise counsel.

    Jim

    Jim well said.  I am a

    Jim well said.  I am a decision maker and value input from others. My situation is clearly on the bubble, as far as my research suggests today.  I did fire my first urologists for his lack of attention to detail, complications in the biopsy, and not be empathetic about telling someone they had cancer.  I meet with my new doc Monday, I have learned a great deal about this disease and I have questions.  

    My goal for Monday is to determine if this doc and I connect and if I feel he really has my best interest in mind and to get his opinion on my current state and what a treatment plan would look like. 

    It is a roller coaster ride so far. I assume in time the peaks and valleys will smooth out.  One minute I think AS is the right choice and the next RP to get it out!   

    The good news is my wife and I are in Maine for the week and I shot my low round of my life at a score of 79!   The little white ball is good therapy!

     

    Be well! Denis

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