Recent diagnosis

BRC
BRC Member Posts: 10
in Prostate Cancer #1

In September 2013 I received blood test result with PSA of 4.9. Subsequent biopsy (9-30-13) indicated prostate cancer. 49cc prostate. Gleason 7  (3+4) in 2 cores out of 16. gleason 6 in some others. 40% of left side and 5% of right showed cancer. November blood test indicated 4.2 PSA. Second biopsy in January 2014 showed 22 cc prostate with 4 out of 11 cores showing cancer. Two were Gleason 7. No cancer on right side. PSA was 1.9 at that time. Blood test on April 11th showed PSA at 1.6. Under Active Survellience. Just turned 60 years old. I am taking Tamsulosin and Finesteride. Otherwise, heavy organics and antioxidants such as pomegranate, lycopene, etc... . I feel somewhat encouraged with these numbers, but I would like to hear some feedback. Any thoughts are appreciated.

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #2
    Active Surveillance Information
    I am sorry for your diagnosis.

     

    Expectant Management

     

    The results from the biopsies, that is the Gleason and other findings, are the critical information in the decision making process. 

     

    Generally those following an Active Surveillance program are limited to a Gleason 3+3=6 for those under 70; for those who are over 70,   and have a Gleason of 3+4=7 Active Surveillance is also appropriate.

     

    In all above cases, a low incidence of these Gleason scores are needed to pursue "Active Surveillance with delayed treatment, if necessary". that is for a person under 70, who has had a 12 core biopsy, two or less positive cores with a Gleason of 3+3=6, with less than 50 percent involvement in each core, is considered very low.

     

    Those in the under 70  age range with a Gleason of 7 are not considered good candidates for Active Surveillance unless the patient has other medical issues that limit his life expectancy to less than 10 years( NCCN Guildelines).

     

    The PSA is not the critical information in making a decision for treatment, the Gleason is.

     

    In your case where you are taking an Alpha 5 Inhibitor,  the PSA has been  cut in half and the prostate size is reduced. This is typical of those who take this drug.

     

    At any rate as a lay person who has been following an Active Surveillance protocol for over five years, and who is informed about this, unless there are other things happening with you ,  a 3+4 Gleason at age 60 is too young to follow an Active Surveillance protocol;

     

    Here is an article by Dr, Klotz, an Active Surveillance expert that you may find informative.

     


     

    It is a good thing that you changed your diet, many of us at who post at this forum have as well. "Heart Healthy is Prostate Healthy".

     

    Sorry that I am not providing information that you would like to read.

     

    Please feel free to ask any follow up questions, or ask about an Active Treatment decision.

     

  • BRC
    BRC Member Posts: 10
    #3
    hopeful and optimistic said:

    Active Surveillance Information

    I am sorry for your diagnosis.

     

    Expectant Management

     

    The results from the biopsies, that is the Gleason and other findings, are the critical information in the decision making process. 

     

    Generally those following an Active Surveillance program are limited to a Gleason 3+3=6 for those under 70; for those who are over 70,   and have a Gleason of 3+4=7 Active Surveillance is also appropriate.

     

    In all above cases, a low incidence of these Gleason scores are needed to pursue "Active Surveillance with delayed treatment, if necessary". that is for a person under 70, who has had a 12 core biopsy, two or less positive cores with a Gleason of 3+3=6, with less than 50 percent involvement in each core, is considered very low.

     

    Those in the under 70  age range with a Gleason of 7 are not considered good candidates for Active Surveillance unless the patient has other medical issues that limit his life expectancy to less than 10 years( NCCN Guildelines).

     

    The PSA is not the critical information in making a decision for treatment, the Gleason is.

     

    In your case where you are taking an Alpha 5 Inhibitor,  the PSA has been  cut in half and the prostate size is reduced. This is typical of those who take this drug.

     

    At any rate as a lay person who has been following an Active Surveillance protocol for over five years, and who is informed about this, unless there are other things happening with you ,  a 3+4 Gleason at age 60 is too young to follow an Active Surveillance protocol;

     

    Here is an article by Dr, Klotz, an Active Surveillance expert that you may find informative.

     


     

    It is a good thing that you changed your diet, many of us at who post at this forum have as well. "Heart Healthy is Prostate Healthy".

     

    Sorry that I am not providing information that you would like to read.

     

    Please feel free to ask any follow up questions, or ask about an Active Treatment decision.

     

    Thank you for your comments and feedback. Obviously, I want to defeat the cancer with the least side effects. I don't want to take foolish risks though. What are your thoughts about treatment options given my situation? Surgery vs proton vs others? I have seen CK mentioned on this site. Thoughts about that?

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #4
    BRC said:

    Thank you for your comments and feedback. Obviously, I want to defeat the cancer with the least side effects. I don't want to take foolish risks though. What are your thoughts about treatment options given my situation? Surgery vs proton vs others? I have seen CK mentioned on this site. Thoughts about that?

    Diagnostic tests and second opinion, and choosing a Treatment

    We who are diagnosed with Prostate Cancer are placed in a position where we need to select a treatment that is best for us based on information that we are able to obtain about the various treatments and side effect, what suits our life style, the medical insurance that we have.

    Additionally it is my opinion that you want to find an "artist" who performs the Active Treatment since in my opinion you have one chance to get it right, and there is a difference between the skill of doctors. 

     

    You also  need to evaluate where you  stand, and determine the best treatment for your case. I made some comments about diagnostic tests and second opinion in this recent thread that I feel will be useful to you, expecially with reference to  extracapusular extension by utilizing a multiparametric MRI. Here is the thread

    http://csn.cancer.org/node/271304

     

     

    It is important for you to interview specialists who do each of the active treatment types, and listen to what they say. In addition, attend local support groups, read books and internet and research each treatment type.

     

    The members of this site each have selected different treatment opinions, and they are qualified to discuss their choices and reason thereof; each person looks at this differently...it's important to hear what they have to say.

     

    By the way, after reading what you posted about your case, it appears to me that you  want to limit the amount of time that you will use to make a decision, not saying that you need to rush into a decision, but you want to actively pursue this, and  limit your decision to three months or less.

     

    As far as side effects, as I understand the side effects from surgery are greater than other treatment types.

     

    SBRT(Cyberknife platform) is one form of radiation that has been developed in the last 8 years.  This treatment is very precise, and if your cancer is localized, the side effects can be  less severe or even non existant. The treatments involve 4 or 5 sessions where you can still continue daily activities.

     

    You need to read about each of type of treatment as well as interview so that you can make a decision that is "best" for you. To be perfectly honest, all of the  choices,  are not perfect, but you have to choose the one thats best for you. My choice of active treatment may or may not be the same choice that you will make.

      

  • shubbysr
    shubbysr Member Posts: 87
    #5
    Keep on Truckin' ! !

    I would not change a thing. Five years ago, I had DaVinci Procedure and today I am 60 years old with continued impotency and some incontinence. Looking back, I would have chosen Active Surveillance or what used to be called "Watchful Waiting". Given today's research and the older we are "waitng:" makes sense.

    You have a healthy diet and lifestyle and your PSA is falling back to normal!!!

     

    Good Luck in your decision.

  • BRC
    BRC Member Posts: 10
    #6
    shubbysr said:

    Keep on Truckin' ! !

    I would not change a thing. Five years ago, I had DaVinci Procedure and today I am 60 years old with continued impotency and some incontinence. Looking back, I would have chosen Active Surveillance or what used to be called "Watchful Waiting". Given today's research and the older we are "waitng:" makes sense.

    You have a healthy diet and lifestyle and your PSA is falling back to normal!!!

     

    Good Luck in your decision.

    Thanks to both of you for you comments and information. In comparing results from the two biopsies, the 9-30-13 biopsy showed 8 foci Gleason 7 (3+4) (less than one mm, less than one mm, 1mm, 3mm, 4mm, 4mm, 6mm and 7mm) involving separate fragments. The January 2014 biopsy showed Gleason 7 (3+4) 5.5mm focus and 2.5 mm focus. Also Gleason 6: 2.5mm and less than 1mm foci. It seems the size has decreased. There appears to be some degree of improvement. Any thoughts or feedback?

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

    Thanks to both of you for you comments and information. In comparing results from the two biopsies, the 9-30-13 biopsy showed 8 foci Gleason 7 (3+4) (less than one mm, less than one mm, 1mm, 3mm, 4mm, 4mm, 6mm and 7mm) involving separate fragments. The January 2014 biopsy showed Gleason 7 (3+4) 5.5mm focus and 2.5 mm focus. Also Gleason 6: 2.5mm and less than 1mm foci. It seems the size has decreased. There appears to be some degree of improvement. Any thoughts or feedback?

    Biopsies

    The majority of biopsies are randomly targeted; that is the cores are not taken in the exact same spot for each set of biopsies...the reason for this is that the ultrasound machine that the average urologist uses is two dimensional, and does not have the ability to go back to the exact same spot...so in your case the biopsies are not taken from the exact same spot, they are different spots in the prostate...sorry the amout of cancer in your biopsies are not declining, the cores  are taken from different locations, so that each of biopsies show results from different core locations, and cannot be compared to each other.....however both biopsies have found gleason 7's which in my layman's opinion is not appropriate for AS.

    During the last few years there is a new investigational type biopsy that can go back to the exact same spot..it works in the following manner..a multiparametric MRI is taken of the prostate, suspicious lessions are dectected and ranked by a radiologist......then the results of the MRI are locked into a new fangled three dimensional biopsy machine, and these suspicious lesions are targeted......this machine has the ability to go back to the exact same spot in a  future biopsy to target areas around core that is in question to see how extensive the cancer is or is not.

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

    I wonder what the urologist has advised you about treatment?, and the next step in treating your cancer.

     Additionally, I would be surprised and shocked if the urologist advised Active Surveillance as a treatment decision for you.

     

    I also wonder why a urologist would do a second biopsy when the first one showed extensive intermediate risk.

    I wish you well.

     

     

  • BRC
    BRC Member Posts: 10
    #8
    hopeful and optimistic said:

    Biopsies

    The majority of biopsies are randomly targeted; that is the cores are not taken in the exact same spot for each set of biopsies...the reason for this is that the ultrasound machine that the average urologist uses is two dimensional, and does not have the ability to go back to the exact same spot...so in your case the biopsies are not taken from the exact same spot, they are different spots in the prostate...sorry the amout of cancer in your biopsies are not declining, the cores  are taken from different locations, so that each of biopsies show results from different core locations, and cannot be compared to each other.....however both biopsies have found gleason 7's which in my layman's opinion is not appropriate for AS.

    During the last few years there is a new investigational type biopsy that can go back to the exact same spot..it works in the following manner..a multiparametric MRI is taken of the prostate, suspicious lessions are dectected and ranked by a radiologist......then the results of the MRI are locked into a new fangled three dimensional biopsy machine, and these suspicious lesions are targeted......this machine has the ability to go back to the exact same spot in a  future biopsy to target areas around core that is in question to see how extensive the cancer is or is not.

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

    I wonder what the urologist has advised you about treatment?, and the next step in treating your cancer.

     Additionally, I would be surprised and shocked if the urologist advised Active Surveillance as a treatment decision for you.

     

    I also wonder why a urologist would do a second biopsy when the first one showed extensive intermediate risk.

    I wish you well.

     

     

    Thanks again for your comments. A CT scan was done in October. I have a MRI scheduled in August. I will try to get that rescheduled sooner. I went to MD Anderson in Houston for second opinion. They wanted to do their own biopsy. I spoke with surgeon as well as radiation doctor. Discussed surgery, proton and other treatments. Surgeon felt I was a "tweener." He felt treatment was as much a risk at this point as waiting. I spoke to the radiologist separately and she was in agreement. As I said, I will try to get the MRI moved up. Again, I appreciate your ideas.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #9
    BRC said:

    Thanks again for your comments. A CT scan was done in October. I have a MRI scheduled in August. I will try to get that rescheduled sooner. I went to MD Anderson in Houston for second opinion. They wanted to do their own biopsy. I spoke with surgeon as well as radiation doctor. Discussed surgery, proton and other treatments. Surgeon felt I was a "tweener." He felt treatment was as much a risk at this point as waiting. I spoke to the radiologist separately and she was in agreement. As I said, I will try to get the MRI moved up. Again, I appreciate your ideas.

    Tesla 3.0 MRI

    Most Medical centers like to do their own diagnostic tests, they generally do not have a lot of confidence with the quality of the tests done elsewhere, and can make you repeat a test.  M.D. Anderson is a center of excellence, one of the very  best in the world. You are  in very good hands there.

    Yes try to move up the MRI. I guess that will be at MD Anderson.

    If you click my name I discussed MRI's and other stuff in my "about me" page which may be useful to you.

    Please keep on researching, and reading about different treatment optionsl..Find a support group to attend in your area.

    Best

  • BRC
    BRC Member Posts: 10
    #10
    hopeful and optimistic said:

    Tesla 3.0 MRI

    Most Medical centers like to do their own diagnostic tests, they generally do not have a lot of confidence with the quality of the tests done elsewhere, and can make you repeat a test.  M.D. Anderson is a center of excellence, one of the very  best in the world. You are  in very good hands there.

    Yes try to move up the MRI. I guess that will be at MD Anderson.

    If you click my name I discussed MRI's and other stuff in my "about me" page which may be useful to you.

    Please keep on researching, and reading about different treatment optionsl..Find a support group to attend in your area.

    Best

    Thanks again. Is Tesla 3.0 MRI a type of MRI procedure or machine? Should I bring this up with MD Anderson? BTW, that is where the MRI is scheduled and I will look to reschedule sooner. I will check out your "about me" page too.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #11
    BRC said:

    Thanks again. Is Tesla 3.0 MRI a type of MRI procedure or machine? Should I bring this up with MD Anderson? BTW, that is where the MRI is scheduled and I will look to reschedule sooner. I will check out your "about me" page too.

    MRI

    There is a differencence among  MRI machines. The most powerful one for clinical use is a MRI machine with a TESLA 3.0 magnet. There is also an MRI machine with a TESLA 1.5 magnet, which is very good, but does not give as much definition as an MRI with a TESLA 3.0. There are also others that are not as powerful.

    It is also important to have skilled personnel administering the test, and an excellent radiologist to interpret the results....a high volume center of excellence like M.D. Anderson will have excellent facilities and personnel to administer and interpret the results of  the test.

     

    Here is what I wrote in the about me page,

    "MRI

    There is an MRI scan for prostate cancer that is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, any evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. There are certain major hospitals that have MRI machines with a 3.0 Tesla magnet.

    In my layman’s opinion it is advisable to have such a test before any surgery or another active treatment. If the cancer is outside the prostate surgery may not be the best decision for treatment"

     

  • BRC
    BRC Member Posts: 10
    #12
    Update - Prostate surgery.

    My apologies for such a delayed update. I am doing well. I decided to undergo a robotic radical prostectomy in October 2014 at M.D Anderson in Houston. All of the follow ups since have shown PSA as non detectable. I feel very fortunate and will continue with the follow ups, the next being in May. 

    Unfortunately, the surgery was non nerve sparing. I was not aware of that until a follow up a couple of months later. I just thought the E..D. was just part of the healing process. I have been using injections in order to get an erection, but with disappointing results. My question is about what other options are available, in particular an implant. Can anyone give me feedback on how that has worked, positives, negatives, advice? Do you recommend it? Other options or ideas? I am 62 and too young to be in this situation. I need to find a solution. Thanks and best wishes to all.

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #13
    BRC said:

    Update - Prostate surgery.

    My apologies for such a delayed update. I am doing well. I decided to undergo a robotic radical prostectomy in October 2014 at M.D Anderson in Houston. All of the follow ups since have shown PSA as non detectable. I feel very fortunate and will continue with the follow ups, the next being in May. 

    Unfortunately, the surgery was non nerve sparing. I was not aware of that until a follow up a couple of months later. I just thought the E..D. was just part of the healing process. I have been using injections in order to get an erection, but with disappointing results. My question is about what other options are available, in particular an implant. Can anyone give me feedback on how that has worked, positives, negatives, advice? Do you recommend it? Other options or ideas? I am 62 and too young to be in this situation. I need to find a solution. Thanks and best wishes to all.

    ED Post Surgery

    Glad to hear you are recovering well for your surgery and am sorry to hear that you didn't realize the permanent effects of surgery if nerve sparing techniques are not (or cannot be) used.

    I hate to be the bearer of bad news but there really isn't much that can be done to achieve a normal erection, if your erectile nerves were cut/destroyed by the  surgery and If you are already self-injecting Caverject  or Edex  (Alprostadil) or some other powerful intravenous ED medication "with disappointing results. "

    The only other choice to achieve an erection would be a penile implant.  The thing about penile implants after surgery  is that, although you will be able to use one to achieve an erection, you probably will not be able to feel any of the normal sensations that lead to orgasm/ejaculation. 

    After radiation treatment or surgery, when the prostate is either destroyed by radiation or removed by surgery, men are no longer able to ejaculate because prostate fluid which serves as the medium by which semen is ejaculated is no longer produced.  However, men who receive radiation treatment or surgery who have not suffered erectile nerve damage can still achieve a dry orgasm with no (or sometimes a small amount of) ejaculate.

    If there is no other way for you to achieve an erection, a penile implant will at least allow you to regain some sexual intimacy with your SO but you need to realize that the penile implant in itself will not enable you to perform sexually as you did before and that the experience may be less than satisfactory psychologically as well.

    Good luck with whatever course of treatment/therapy you choose to deal w/this problem!

     

     

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #14
    BRC said:

    Update - Prostate surgery.

    My apologies for such a delayed update. I am doing well. I decided to undergo a robotic radical prostectomy in October 2014 at M.D Anderson in Houston. All of the follow ups since have shown PSA as non detectable. I feel very fortunate and will continue with the follow ups, the next being in May. 

    Unfortunately, the surgery was non nerve sparing. I was not aware of that until a follow up a couple of months later. I just thought the E..D. was just part of the healing process. I have been using injections in order to get an erection, but with disappointing results. My question is about what other options are available, in particular an implant. Can anyone give me feedback on how that has worked, positives, negatives, advice? Do you recommend it? Other options or ideas? I am 62 and too young to be in this situation. I need to find a solution. Thanks and best wishes to all.

    Not an ED specialist

    but there are a bunch of pharmacological options that are worth trying. Among others, Cialis, Viagra, bimix, trimix. Some of these can be tried at different dosages. Did you evaluate all of these?

    Your surgery was almost two years ago, perhaps some function might still return? Yes, not very likely, unfortunately.

    I apologize for not addressing the main question that you posed.

  • BRC
    BRC Member Posts: 10
    #15
    Swingshiftworker said:

    ED Post Surgery

    Glad to hear you are recovering well for your surgery and am sorry to hear that you didn't realize the permanent effects of surgery if nerve sparing techniques are not (or cannot be) used.

    I hate to be the bearer of bad news but there really isn't much that can be done to achieve a normal erection, if your erectile nerves were cut/destroyed by the  surgery and If you are already self-injecting Caverject  or Edex  (Alprostadil) or some other powerful intravenous ED medication "with disappointing results. "

    The only other choice to achieve an erection would be a penile implant.  The thing about penile implants after surgery  is that, although you will be able to use one to achieve an erection, you probably will not be able to feel any of the normal sensations that lead to orgasm/ejaculation. 

    After radiation treatment or surgery, when the prostate is either destroyed by radiation or removed by surgery, men are no longer able to ejaculate because prostate fluid which serves as the medium by which semen is ejaculated is no longer produced.  However, men who receive radiation treatment or surgery who have not suffered erectile nerve damage can still achieve a dry orgasm with no (or sometimes a small amount of) ejaculate.

    If there is no other way for you to achieve an erection, a penile implant will at least allow you to regain some sexual intimacy with your SO but you need to realize that the penile implant in itself will not enable you to perform sexually as you did before and that the experience may be less than satisfactory psychologically as well.

    Good luck with whatever course of treatment/therapy you choose to deal w/this problem!

     

     

    ED post surgery

    Thanks for your feedback. I knew what the result of non-nerve sparing would be. I was hopeful it wouldn't go that route, but it did. However, I knew it was a possibility.  I wasn't told about it until a follow up a couple of months later. As it turns out, it was in the written report, but I did not catch it until later. Apparently when the doctor went in, he found the prostate to be messier than expected. The goal was to defeat the cancer and I feel confident in that. I am just looking for someway to get some degree of a sex life back. I meet with the doctor again tomorrow. I may try the shots some more. Pellets? Possibly the implant. Anyone know anything about nerve grafting?

  • BRC
    BRC Member Posts: 10
    edited May 2016 #16
    ED post surgery

    Thanks for your comments. I have tried Viagra but so far it hasn't helped. I may try the shots some more and keep looking at other options.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    edited May 2016 #17
    There are therapies for Ed

    There are therapies for Ed after surgery many Physicians recommend a daily dose of 10 milligrams of Viagra to bring blood to the penis, also use of a vacuum pump is recommended.... that may or may not have helped in your case

    At this point I suggest that you see a urologist that specializes in ed there is one at the Sloan-Kettering I think his name is Mulhill who also wrote a book on the subject. I hope that another poster will know his name

     You might get a recommendation from your surgeon.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #18
    BRC said:

    ED post surgery

    Thanks for your comments. I have tried Viagra but so far it hasn't helped. I may try the shots some more and keep looking at other options.

    Shots

    BRC,

    I'm thankful you are cancer free. The surgery has done that for you. The ED is unfortunate, especially today, whien most doctors attempt nerve sparing. I have read that when nerve sparing is not done, it is usually because the surgeon feared leaving positive margins around the edge of the gland.

    You mentioned using "shots." I am not certain what you are referring to, but I used a drug combination called TRIMIX for several months shortly after RP, and it worked great for me. During that time I was 0% able to get an erection.  But with a shot, I had one within 15 minutes or less. An issue was that they did not go away for usually an hour or more.  I have read that TRIMIX works regardless of the nerve situation.

    All urologists are familiar with TRIMIX.  The doctor or nurse gives the patient full training before the first dose.  The needles are tiny, and did not hurt me.  The sex was not like before surgery, but decent. 

    I have read of some surgeons attempting reconstructive erectile nerve surgery, but this is uncommon, and would require seeing someone who specializes in the practice.  I expect that it is very expensive, and may not be covered by insurance (I have no idea).  Plus, you would have to undergo surgery again.  I have seen models of the implants in my doctor's office, and they are just not something I would ever agree to, but that is just me.

    If you have not yet used TRIMIX, give it a try. It worked fast for me, even when pills were doing NOTHING.

    max

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