Is AS deciding not to decide?

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

I am new at this PC adventure and in the early decision-making state. I read a great deal, am active on a few forums, have a great Doc and feel well informed. Yesterday on a forum a Gentleman shared his AS story and the shock of going from G6 to G9 in five years. A great discussion in the thread occurred. 
To say it set me on my heels is not an overstatement. I have been through the typical emotional wringer many of us go through in the early days of diagnosis. I had become comfortable with following AS at Yale. I meet with my Uro today, hopefully, to get Decipher results and create a short-term plan. 
And the post mentioned has me full of doubt. I also had this thought that my fear of intervention (which I believe will happen at some point) is really about the SEs of intervention. So, the bet I am making is it worth delaying SEs for some period and risking advanced disease and possibly metastasis? 

At the PCRI conference, I met a big group of men on AS who were very happy. A few who had interventions after AS for many years and were pleased with their decision. I believe there is great value in AS for many. Am I one of them is the key question?
As I reflect on the many tough decisions I have made in my life, none seem as difficult as this one. The impreciseness of the tools we have, the complexity of this stupid little gland, and the bias we all have makes this a most difficult decision. 

What do I know? Well I know I have positive cores with second opinion grading. I don’t know if there is a worst disease that the biopsy missed but probability wise there is a greater chance that I have worse than better cancer. More cases are upgraded than downgraded. I also know many guys who have had /are having a good run at AS and even those who intervened were able to keep the window of survivability open. 

I am getting clearer, for me, that AS is a good strategy that really is delayed intervention for many. In the recent Netherlands study, the following was found:
https://prostatecancerinfolink.net/2...e-netherlands/

Here is what Verbeek et al. reported in London:
• Of the 900 eligible patients,
o 223 (24.8 percent) were initially placed on active surveillance.
o 312 (34.7 percent) elected immediate radiation therapy.
o 365 (40.6 percent) elected immediate radical prostatectomy.
• The 15-year rates of metastasis-free survival were
o 96.9 percent for the men initially placed on active surveillance.
o 96.6 percent for the men treated with immediate radiation therapy.
o 97.7 percent for the men treated with immediate radical prostatectomy.
• The 15-year rates of prostate cancer-specific survival were
o 97.2 percent for the men initially placed on active surveillance.
o 97.5 percent for the men treated with immediate radiation therapy.
o 98.5 percent for the men treated with immediate radical prostatectomy.
• There were no statistically significant differences between the groups of patients with regard to either metastasis-free or prostate cancer-specific survival.

Well, I am a bit lost as to my next steps. I do trust my doc and today will have a gut discussion. I am confident the path will be clearer later today and my wife and I can decide the best course for us. I am open to input for all. 

Well time to go for a run and let the spirits guide me! Be well all! Denis

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,209 Member
    #2
    Roll the dice?

    Hi,

    AS at least in my opinion is a personal decision based on individual facts for each person.  What was the gleason score, where is the cancer located within the prostate,has the cancer spread,what is your age,quality of treatment & doctors are all questions that need to be answered.  I personally find it very nerve racking to know I have cancer in my body and am doing nothing about it, but that's just me.  I had no symptoms other than a weak stream when I peed with my Pca, now I piss like a race horse but have a little dribble after.  AS I feel can be done for a while but sooner or later some kind of more agressive treatment might be needed depending on your age. Let's face it if I was 93 yrs old and had a 3+3 AS would be my choice.  It's really up to the person once they have analyized all the facts of the treatment & side effects.

    Dave 3+4

  • SubDenis
    SubDenis Member Posts: 130 Member
    edited September 2017 #3
    Clevelandguy said:

    Roll the dice?

    Hi,

    AS at least in my opinion is a personal decision based on individual facts for each person.  What was the gleason score, where is the cancer located within the prostate,has the cancer spread,what is your age,quality of treatment & doctors are all questions that need to be answered.  I personally find it very nerve racking to know I have cancer in my body and am doing nothing about it, but that's just me.  I had no symptoms other than a weak stream when I peed with my Pca, now I piss like a race horse but have a little dribble after.  AS I feel can be done for a while but sooner or later some kind of more agressive treatment might be needed depending on your age. Let's face it if I was 93 yrs old and had a 3+3 AS would be my choice.  It's really up to the person once they have analyized all the facts of the treatment & side effects.

    Dave 3+4

    Thanks, Dave and I agree it

    Thanks, Dave and I agree it is a personal decision.  Be well, Denis

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    edited October 2017 #4
    Personal Choice

    Hopeful & Optomistic is our resistent AS expert.  I assume he'll chime in soon.

    In my case, I chose not to go w/AS because (like many) I didn't like the idea of leaving an active (albeit slow growing) cancer otherwise untreated in my body.  Nor did I like the idea of needing to constantly worry what the next PSA test might reveal.  The uncertainty would have been too unsettling.

    Some men opt for surgery to cut the cancer out ASAP w/o due regard for the potential risks.  After my research I chose CyberKnife which offered the least risk of side effects but the equal likelihood (compared w/surgery) of success.  I have been cancer free for 7 years w/o any side effects.  So, it was the best choice I could have made for me.

    What you (OP) decide do is of course entirely up to you. 

    Sounds like you've done your research and, if AS is your choice, just make the commitment and do it.  However, going w/AS does not preclude you from considering other treatment choices now. 

    Fact is, you could go for years (or forever) w/o ever needing treatment while monitoring it under AS but, if/when that day comes where you are told that the cancer needed to be treatment, you had best considered the options previously.

    Good luck!

     

     

  • CC52
    CC52 Member Posts: 105 Member
    #5
    No

    Of course it's a decision. It's an action taken that's made after careful consideration of varied contributing factors. And it doesn't mean you then do nothing. A person that chooses AS has certain protocol to follow over time. It's not for everyone, and I respect and admire those that choose that option.

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