My cancer, my journey, my learnings at one month!

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

A month ago, I sat in a urologist’s office, whom I had only one brief meeting with prior, and he said, “we have mixed news… you have cancer.” Not sure I heard too much after that. Unfortunately, my wife was out of town, as we expected it to be nothing. I did hear the Urologist quickly review the options and clearly thought surgery was my best bet and he could do it before we left for Florida in October. I then went to schedule follow up meeting with him and could not get an appointment for 5 weeks. I left the office bewildered, alone and full of questions. He spent 15 minutes with me. 
Shock was the feeling I experienced the next few days. I had to call my wife and tell her and her first husband died of cancer. That was the hardest call I have ever made. What made it hard was I was lost, adrift in the sea of cancer. 
So, I embarked on learning about the disease and options. A good friend had just been through a scary bout with cancer and she recommends Yale-Smilow, which I considered and choose them. My data was in the low-risk category, I was to learn. Low PSA, low volume of cancer in the biopsy. I had a fusion biopsy after a multiparametric MRI, which showed a lesion. The biopsy focused on that and took 12 other samples. All came back Gleason 6, 3 or 4 positive cores out of 13, two <30% and 2 < 5%.
Yale redid the pathology and believe one had a very small amount of G7 <5%. My Yale urologist spent nearly 1.5 hours with us and balanced the science with empathy. My wife and I came away feeling we were in good hands. He advocated for AS and wanted Decipher test to inform the decision.
I am now waiting for that and continuing my study. I can say that the emotional roller-coaster is still twisting and turning. One day I feel good about AS, the next I think I should have an intervention. Based on what I have learned to date, I do believe AS is appropriate, even though John Hopkins protocol would probably not take me but other leading institutions world. I also believe there is a 50-50 chance I will have an intervention at some point. And there in lies the risk/reward bet!
Metastasis is the real enemy, in my opinion. Side effects re the price of admission to prevent metastasis. The docs are very unsure when intervention is needed. Many have thoughts and philosophies about when and they always say, “it is up to you!” 
What I know: I have cancer, it is low risk, it is growing slowly. I am healthy and relatively young. My family history has no long-life males, I am the oldest surviving male at 65. I know interventions do not mean cure, it can come back. I know the medical community is working hard at new research and there will be better and better treatments as time goes by. 
What I feel: I have real confidence in my Yale Urologist, I feel he is balanced and clearly has my best interests in mind. I feel he will be clear about treatment when needed. I feel there is a low risk of metastasis getting away from us. And I worry about this! I am most worried about incontinence. 
So, lost in the sea of cancer is not totally accurate anymore. I now am in a lifeboat with a crude navigation chart. In Navy terminology, I am on a shakedown cruise trying to get comfortable with all the realities of PC and treatment options. I know I cannot sail alone and that my docs and support groups make up my crew. I know there will be rough water ahead and I know I will be ready! I hope I can see the beauty in the world while I am on this cruise. I have a wonderful life and I have cancer. It is not I have a wonderful life BUT I have cancer. Life is meant to be lived! 
Thanks for helping me along this journey! Denis

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #2
    Keep doing your homework

    Hi,

    Sounds like you are starting to do your homework on wether to go AS or take on some kind of treament.  At 65 I hope you have a lot of living left to do.  It's an individual descison with the docs & spouse advice. I would study, study,study and in your own mind come to a conculsion on what you want to do.  I feel that if you really research the treatment options you will be confident in your decision with good or bad results.  Know the treatments, know the risks, good luck.

    Dave 3+4

  • SubDenis
    SubDenis Member Posts: 130 Member
    #3
    Clevelandguy said:

    Keep doing your homework

    Hi,

    Sounds like you are starting to do your homework on wether to go AS or take on some kind of treament.  At 65 I hope you have a lot of living left to do.  It's an individual descison with the docs & spouse advice. I would study, study,study and in your own mind come to a conculsion on what you want to do.  I feel that if you really research the treatment options you will be confident in your decision with good or bad results.  Know the treatments, know the risks, good luck.

    Dave 3+4

    Thanks Dave I am a prostate

    Thanks Dave I am a prostate cancer knowledge junky!  Denis

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #4
    A prostate cancer knowledge junky

    Denis,

    I like your story, in particular the way you took to get to decisions. Knowing the facts and educating oneself on the problem is the best we can do. There is no perfect answer to fix the issue but you have decided on AS and I applaud you. Not many chose to live life with an unwanted guest. In my opinion AS is the way to follow when the bandit is of low risk.

    I hope many newbies read your story and take it as a good example. Maybe you can become a good advocate providing help to those afflicted with the problem and freaked out. Fear is the initial status till someone listens to our appeal and provides guidance even with a lay opinion. Once on the rails we just need to push it forwards.

    Here are your threads for those wanting to know about your experiences;

    https://csn.cancer.org/node/311048

    https://csn.cancer.org/node/311287

    Best wishes and lunk in your continuing journey.

    VGama

  • airborne72
    airborne72 Member Posts: 303 Member
    #5
    Shakedown Cruise

    Denis:

    To old Army guys the "shakedown" adjective applied to a health and welfare inspection - a legally sufficient method of finding contraband.  Different strokes for different folks, or branch of service.  Your analogy is a very good description.

    My ramp up for a PC course of action was similar.  The brevity of time with some surgeons compared to others.  The lost at sea feelings (the first 90 minutes after I was pronounced a victim of cancer was spent in rush hour traffic; I was truly a commuter Zombie).  The overriding motivation to regain control of your life.

    Finally I gained some traction and satisfaction.  I approved and accepted (more important) a course of action.  From that moment on I had greater peace of mind.  Eventually, I had a radical robotic prostatectomy. The medical community pronounced me cancer free; however, my life had changed forever.  At 58 years of age I was pronounced free from a symtomless cancer, but also impotent. 

    If I had the option for AS then I would take it!  The negative impact from surgery can be significantly "quality of life" altering.  With AS, you are merely adding yet another target on your radar display.  Assign it a higher level of importance and monitor it, but continue your course.  Live your life Denis.  To quote one of your naval ancestors..."damn the torpedoes, full speed ahead."

    Jim

     

  • GeorgeG
    GeorgeG Member Posts: 152
    #6
    Glad to hear that you are

    Glad to hear that you are finding some peace with your new reality.

    I believe that we need some new vocabulary (or use more of what we have) when it comes to tumors/lesions. in modern times with biopsies, blood test and enhanced imaging we see or track many more events in the body than ever, not all of which have the risk of disease specific mortality. Gleason score is one such improvement in assessment of risk.  Hopefully in the future we will be able to more easily move past the discovery of low risk issues by declaring AS and being comfortable with it. I think that we are still universally struck with terror at the words cancer or we see something suspicious because decades ago when someone was told that they had cancer the outlook was universally bad due to the typical late stage discovery with advanced symptoms. Today we frequently hear these words and are completely without symptoms. AS is of course not without risk but unnecessary treatment is also not without risk.

    Some of the data that I have seen suggests that intervention does not change the outcome of PC in a great many of cases. It's gonna be what it's gonna be. That's not true in every case of course and better science is working to understand the cases where intervention will help and to discover what course of action will give the best results. AS has made a lot of progress in recent years. We are going with AS for now with my wife's new imaging anomalies post thyroid cancer surgery So I understand the emotional dilemma but we are comfortable with the decision. I wanted AS for my PC but as it unfolded it kept looking more and more like a poor choice for me. I am happy for you that you are facing a lower risk case. 

    George

     

  • SubDenis
    SubDenis Member Posts: 130 Member
    #7
    VascodaGama said:

    A prostate cancer knowledge junky

    Denis,

    I like your story, in particular the way you took to get to decisions. Knowing the facts and educating oneself on the problem is the best we can do. There is no perfect answer to fix the issue but you have decided on AS and I applaud you. Not many chose to live life with an unwanted guest. In my opinion AS is the way to follow when the bandit is of low risk.

    I hope many newbies read your story and take it as a good example. Maybe you can become a good advocate providing help to those afflicted with the problem and freaked out. Fear is the initial status till someone listens to our appeal and provides guidance even with a lay opinion. Once on the rails we just need to push it forwards.

    Here are your threads for those wanting to know about your experiences;

    https://csn.cancer.org/node/311048

    https://csn.cancer.org/node/311287

    Best wishes and lunk in your continuing journey.

    VGama

    Thanks VG,  I am a real

    Thanks VG,  I am a real believer we are all in this together and some days we take and some days we give!  Denis

  • SubDenis
    SubDenis Member Posts: 130 Member
    #8
    airborne72 said:

    Shakedown Cruise

    Denis:

    To old Army guys the "shakedown" adjective applied to a health and welfare inspection - a legally sufficient method of finding contraband.  Different strokes for different folks, or branch of service.  Your analogy is a very good description.

    My ramp up for a PC course of action was similar.  The brevity of time with some surgeons compared to others.  The lost at sea feelings (the first 90 minutes after I was pronounced a victim of cancer was spent in rush hour traffic; I was truly a commuter Zombie).  The overriding motivation to regain control of your life.

    Finally I gained some traction and satisfaction.  I approved and accepted (more important) a course of action.  From that moment on I had greater peace of mind.  Eventually, I had a radical robotic prostatectomy. The medical community pronounced me cancer free; however, my life had changed forever.  At 58 years of age I was pronounced free from a symtomless cancer, but also impotent. 

    If I had the option for AS then I would take it!  The negative impact from surgery can be significantly "quality of life" altering.  With AS, you are merely adding yet another target on your radar display.  Assign it a higher level of importance and monitor it, but continue your course.  Live your life Denis.  To quote one of your naval ancestors..."damn the torpedoes, full speed ahead."

    Jim

     

    Jim thanks, I am hoping that

    Jim thanks, I am hoping that AS will buy me time and allow the docs to invent better treatments.  Denis

  • SubDenis
    SubDenis Member Posts: 130 Member
    #9
    GeorgeG said:

    Glad to hear that you are

    Glad to hear that you are finding some peace with your new reality.

    I believe that we need some new vocabulary (or use more of what we have) when it comes to tumors/lesions. in modern times with biopsies, blood test and enhanced imaging we see or track many more events in the body than ever, not all of which have the risk of disease specific mortality. Gleason score is one such improvement in assessment of risk.  Hopefully in the future we will be able to more easily move past the discovery of low risk issues by declaring AS and being comfortable with it. I think that we are still universally struck with terror at the words cancer or we see something suspicious because decades ago when someone was told that they had cancer the outlook was universally bad due to the typical late stage discovery with advanced symptoms. Today we frequently hear these words and are completely without symptoms. AS is of course not without risk but unnecessary treatment is also not without risk.

    Some of the data that I have seen suggests that intervention does not change the outcome of PC in a great many of cases. It's gonna be what it's gonna be. That's not true in every case of course and better science is working to understand the cases where intervention will help and to discover what course of action will give the best results. AS has made a lot of progress in recent years. We are going with AS for now with my wife's new imaging anomalies post thyroid cancer surgery So I understand the emotional dilemma but we are comfortable with the decision. I wanted AS for my PC but as it unfolded it kept looking more and more like a poor choice for me. I am happy for you that you are facing a lower risk case. 

    George

     

    Thanks, George, My Uro told

    Thanks, George, My Uro told me the med community is/may be a shift to a 1-5 scale for PC.  1 being G6, etc. I think 9 and 10 are grouped to 5.  I wish you well in your decision/treatment. Denis

  • Grinder
    Grinder Member Posts: 487 Member
    #10
    This forum

    I keep drifting back to this forum because the guys here know so much and have been through it all... But most of all there is no profit motive to steer people to one procedure over another. Not that profit is a bad thing.

    But some clinics and hospitals and uros and oncs want to steer you toward what's available from them, however in this forum VdG and Max and others know all the available treatments and procedures. For all the different treatments and procedures, there is likely many in these archives who had success, but also many who did not. If I was a GP, I would recommend this forum to all my PC patients. No matter how good a urologist is, he could never relay this much information during an hour long consultation.

    Fyi my dad was diagnosed with non aggressive cancer and passed away at 90 from organ failure unrelated to PC... Started with his liver and side effects from a white blood cell medication.

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