Diagnosed Again

cchqnetman
cchqnetman Member Posts: 119
in Prostate Cancer #1
Hello,
I was originally diagnosed in 1999 with PC. At that time to cancer was so small a Gleason Score could not be determined. I opted for Watchful Waiting (now called Active Surveillance). My oncologist has followed me via DREs and PSA test. I had several biopsies that were all negative which got me wondering if I really had PC. Due to some other recent problems (kidney disease, kidney stones, perforated ulcer, etc) I had several CT scans and x-rays done. They noticed my prostate was enlarged and also my PSA had been on the rise (last one was 7.7). My oncologist suggested another biopsy and I agreed. He said he would like to do a 12-core biopsy at the same time I was having a kidney stone removed since I would be out anyhow. Well the results came back and two of the 12 cores were positive for PC. The Gleason Score this time was a 3+4 on both cores that were positive.

I am considering continuing with my Active Surveillance.

FYI, I am 62 years old, currently employed but would like to retire soon due to health issues - mainly my kidney problems. I am married with one child (turing 40 this year but she is still my baby to me). I did serve in Vietnam from Jan 1969 to Oct 1970. I am currently at 100% for my PC.

Any thoughts??

Thanks in advance.

Comments

  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    #2
    Compensation
    Sorry of your condition's and I would keep a close I on your prostate. As fas as Vietnam you should check for other conditions that are like DiabetesII and secondary conditions to Agent Orange. Are you totally and permanently disabled from VA?

    Before you doing anything to your prostate, take the time to get second opinion!!!! Even go to the VA hospital and let them give their opinion!

    Do not wait!
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #3
    Some thoughts
    You did not mention the involvement, that is what percent of each of the two cores were positive. (There is a difference in a diagnosis of 3+4=7 . There is a 7 that's a big deal, and there is a 7 that is not such a big deal depending on other factors such as involvement and potential other lesions). That said, guidelines recommend Active Surveillance for those with a 3+4=7 if there is less than a 10 year life expectancy. You are only 62, unless you have major health issues, I do not believe that Active Surveillance is appropriate for you .

    I also suggest that you get an MRI with endorectal coil to determine is there is any extracapsular extension, and also find out where and how many suspecious lesions exist. Best to use a major institution that has an MRI machine with a tesla 3.0 magnet.


    It is very very important for you to have a second opinion by a world class pathologist on the results of your biopsy. Determining the gleason score is subjective, and you want to make sure that the results that you will base your treatment on is correct. Two potential world class pathologists are David Bostwick of Virginia 800 214-6628 and UroCor: 800 411-1839. There is a possiblity that the results that you now hove are incorrect. You do not want to be under or over treated.

    I wish you the best.
  • cchqnetman
    cchqnetman Member Posts: 119
    #4
    ralph.townsend1 said:

    Compensation
    Sorry of your condition's and I would keep a close I on your prostate. As fas as Vietnam you should check for other conditions that are like DiabetesII and secondary conditions to Agent Orange. Are you totally and permanently disabled from VA?

    Before you doing anything to your prostate, take the time to get second opinion!!!! Even go to the VA hospital and let them give their opinion!

    Do not wait!

    100%
    I am 100% but not P&T. Thanks for the advice.
  • cchqnetman
    cchqnetman Member Posts: 119
    #5
    hopeful and optimistic said:

    Some thoughts
    You did not mention the involvement, that is what percent of each of the two cores were positive. (There is a difference in a diagnosis of 3+4=7 . There is a 7 that's a big deal, and there is a 7 that is not such a big deal depending on other factors such as involvement and potential other lesions). That said, guidelines recommend Active Surveillance for those with a 3+4=7 if there is less than a 10 year life expectancy. You are only 62, unless you have major health issues, I do not believe that Active Surveillance is appropriate for you .

    I also suggest that you get an MRI with endorectal coil to determine is there is any extracapsular extension, and also find out where and how many suspecious lesions exist. Best to use a major institution that has an MRI machine with a tesla 3.0 magnet.


    It is very very important for you to have a second opinion by a world class pathologist on the results of your biopsy. Determining the gleason score is subjective, and you want to make sure that the results that you will base your treatment on is correct. Two potential world class pathologists are David Bostwick of Virginia 800 214-6628 and UroCor: 800 411-1839. There is a possiblity that the results that you now hove are incorrect. You do not want to be under or over treated.

    I wish you the best.

    Some Thoughts Reply
    I have an appointment with my oncologist on Tuesday. I will take yuor suggestions and discuss them with him. The reason I am considering continuing Active Surveilance is I am more interested in quality of life rather than quantity.

    Thanks for the feedback.
  • Samsungtech1
    Samsungtech1 Member Posts: 351
    #6
    cchqnetman said:

    Some Thoughts Reply
    I have an appointment with my oncologist on Tuesday. I will take yuor suggestions and discuss them with him. The reason I am considering continuing Active Surveilance is I am more interested in quality of life rather than quantity.

    Thanks for the feedback.

    Treatments
    As long as you can do active surveliance it is good. Keep it up. They will tell you when you need to do something. If it is slow growing just be aware of it and enjoy life.

    Good luck,

    Mike
  • laserlight
    laserlight Member Posts: 165
    #7
    Samsungtech1 said:

    Treatments
    As long as you can do active surveliance it is good. Keep it up. They will tell you when you need to do something. If it is slow growing just be aware of it and enjoy life.

    Good luck,

    Mike

    Active surveliance
    Hello, If you can do this then go for it. The quality of life is important, also follow thru with the VA on Agent Orange, I am another Viet Nam Vet with PC. welcome to the group. Ralph is right keep up with the VA. my name is Kurt, Viet Nam 69 70, 18 month tour. glad to meet you
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #8
    Samsungtech1 said:

    Treatments
    As long as you can do active surveliance it is good. Keep it up. They will tell you when you need to do something. If it is slow growing just be aware of it and enjoy life.

    Good luck,

    Mike

    Active Surveillance for delayed treatment
    As a man who has been on active surveillance for the last 3 and half years, since I turned 66 with a low volume, low psa, gleason 3+3=6, if a it is shown that my gleason goes to a 3+4=7, an intermediate level, I will seek active treatment, I will no longer be able to continue with the active surveillance protocol; diagnostic of intermediate level is the triger that will call for active treatment at my age of 69/70 .

    I am thinking that I might live another 20 to 25 years; 10 years and then progression will not do it for me.....I would expect that I will have a very poor quality of life for the last 10 or 15 years of my life if I continue with active surveillance.

    The NCCN practice guidelines in Oncology - v2.2010 for clinically localized, intermediate" gleason score 7 or psa 10-20ng/ml recommends Active surveillance for less that 10 years life expectency....
  • cchqnetman
    cchqnetman Member Posts: 119
    #9
    laserlight said:

    Active surveliance
    Hello, If you can do this then go for it. The quality of life is important, also follow thru with the VA on Agent Orange, I am another Viet Nam Vet with PC. welcome to the group. Ralph is right keep up with the VA. my name is Kurt, Viet Nam 69 70, 18 month tour. glad to meet you

    Thanks
    Just got back from the VA Hospital. One of the cores was less that 5% and the other was 50%. My doc agreed with me that my plan was reasonable. You were in Viet Nam about the same time I was. I was at Tan Son Nhut AB. Worked in 7th Air Force.

    Thanks for the encouragement.
  • cchqnetman
    cchqnetman Member Posts: 119
    #10
    Samsungtech1 said:

    Treatments
    As long as you can do active surveliance it is good. Keep it up. They will tell you when you need to do something. If it is slow growing just be aware of it and enjoy life.

    Good luck,

    Mike

    Thanks
    I have a pretty good doc at the VA Hospital. He is OK with the Active Surveilance - not sure my wife is on board though.

    Thanks for the encouragement.

    David
  • cchqnetman
    cchqnetman Member Posts: 119
    #11
    hopeful and optimistic said:

    Active Surveillance for delayed treatment
    As a man who has been on active surveillance for the last 3 and half years, since I turned 66 with a low volume, low psa, gleason 3+3=6, if a it is shown that my gleason goes to a 3+4=7, an intermediate level, I will seek active treatment, I will no longer be able to continue with the active surveillance protocol; diagnostic of intermediate level is the triger that will call for active treatment at my age of 69/70 .

    I am thinking that I might live another 20 to 25 years; 10 years and then progression will not do it for me.....I would expect that I will have a very poor quality of life for the last 10 or 15 years of my life if I continue with active surveillance.

    The NCCN practice guidelines in Oncology - v2.2010 for clinically localized, intermediate" gleason score 7 or psa 10-20ng/ml recommends Active surveillance for less that 10 years life expectency....

    Thanks
    I got a copy of the report. One core was less than 5% and the other was 50%. They classified it as T1CN0M0. My last PSA was around 7. Understand what you are saying about waiting. I am not sure I have 10 years no matter what I do. I have one other major problem - kideny disease. I am in stage I of that. I have repeated kidney stones and every time I have a CT scan they always comment about the left kidney being small and irregular shaped. I guess I am gambling.

    Thanks again for the feedback.
  • Samsungtech1
    Samsungtech1 Member Posts: 351
    #12
    cchqnetman said:

    Thanks
    I have a pretty good doc at the VA Hospital. He is OK with the Active Surveilance - not sure my wife is on board though.

    Thanks for the encouragement.

    David

    Good Luck with Treatment
    Another viet vet saying I wish you well. Laserlight is giving you really good info. There are alot of other issues that come up. I was really fit until prostate cancer, but had nodules to lungs. I assumed my difficulty breathing was my lung nodules. Well I was wrong my GP sent me to a heart dr. And he told me I was going on the table. No tests except for BP. Turned out my LAD was blocked and got a stent in my heart. My lifestyle would not have warranted this, but Agent Orange can do this. There are about 14 different things AO can give you. You need to be aware of them.

    Good luck,

    Mike
  • Samsungtech1
    Samsungtech1 Member Posts: 351
    #13
    Samsungtech1 said:

    Good Luck with Treatment
    Another viet vet saying I wish you well. Laserlight is giving you really good info. There are alot of other issues that come up. I was really fit until prostate cancer, but had nodules to lungs. I assumed my difficulty breathing was my lung nodules. Well I was wrong my GP sent me to a heart dr. And he told me I was going on the table. No tests except for BP. Turned out my LAD was blocked and got a stent in my heart. My lifestyle would not have warranted this, but Agent Orange can do this. There are about 14 different things AO can give you. You need to be aware of them.

    Good luck,

    Mike

    One more thing
    I had insurancenand because of issues withVA I quit going there. I feel I would have died had I listened to their PA urologist. You need to be on top of your treatments. Your body will tell you if everything is going ok. Be pro active on treatment.

    Mike
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #14
    cchqnetman said:

    Thanks
    I got a copy of the report. One core was less than 5% and the other was 50%. They classified it as T1CN0M0. My last PSA was around 7. Understand what you are saying about waiting. I am not sure I have 10 years no matter what I do. I have one other major problem - kideny disease. I am in stage I of that. I have repeated kidney stones and every time I have a CT scan they always comment about the left kidney being small and irregular shaped. I guess I am gambling.

    Thanks again for the feedback.

    I wish you well in your decison
    it might work out, however you need to be very closely monitored by an expert..

    By the way, will you be getting a second opinion on your biopsy?

    Will you be seeking an MRI?
  • cchqnetman
    cchqnetman Member Posts: 119
    #15
    hopeful and optimistic said:

    I wish you well in your decison
    it might work out, however you need to be very closely monitored by an expert..

    By the way, will you be getting a second opinion on your biopsy?

    Will you be seeking an MRI?

    MRI
    As it stands right now I am waiting 3 months to see what my PSA does and then we'll see what other tests I am going to have.

    Thanks!!

    David
  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    #16
    Samsungtech1 said:

    One more thing
    I had insurancenand because of issues withVA I quit going there. I feel I would have died had I listened to their PA urologist. You need to be on top of your treatments. Your body will tell you if everything is going ok. Be pro active on treatment.

    Mike

    Va Hospital
    When i went to VA hospital, they are good doctor's and they care very much.They are from a great places called UT Southwestern Cancer center. Now the bad news,they are controlled by Goverment rule's and if you need the latest drug's. You would not get it, they would use old or cheaper drug's and you would live in pain. If I had not brought my presciption from MDACC for Zytiga 6 month ago they would have giving a cheaper drug and my monster would have grow.

    If you have outside insurance than use it , but if you don't than push these doctor at Va to give the best medicine. Just knowing the name of the different type of prostate cancer drug's can help.

    God bless

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