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Advanced Prostate Cancer
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PSA teating or wait it out?

Hello - had RRP in Feb 2017 --- had residual PSA right after that --- off to MSK for ADT ( fun - NOT for 1 yr ) and then 40 IMRT. Been at nadir since June 2017 and off Lupron since 2/17 thank god. GS 9 - regional, 2 bone scans both good - head to toe CT Sept 2017 prior to my RT. I'm now in the follow up with PSA checks, last one Feb 2017, again nadir. Totally asymptomatic and not doing well with this PSA cloud hanging over my head - I m 67 and in good health until this kick in the pants.

There are so many opinions out there and no one really has an answer and I accept this... Thinking about just waiting this out, until symptoms come along - might be better than this PSA cloud following me... and worry all the time....

Any thoughts?

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Are you saying that you want to stop getting your PSA checked periodically? I practice mindfulness to help me deal with what IS rather than what I imagine. I highly recommend it.

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Thanks for the reply -- and yes, am thinking about that --- will research as best as I can to determine what steps will be offered to me if the PSA jumps a bit... Read so many things about small fluctuations and overtreatment --- not sure I can deal with that -- but again, thanks for ur reply.. what would be great is if I could find a Nomogram for my situation...

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Here ya go:

riskcalc.org/ProstateCancer...

But you really won't know until your testosterone returns to normal levels.

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Hey TA --- thanks alot...... why couldn't I find that --- I just joined and have seen ur name a few times...

My RO says he expects to get my T levels to about 3xx , they were 505 b4 lupron--- and maintain me at nadir. I think it might be time to move on to a med O -- u agree...

I have such a bad phobia about testing, esp PSA - should I back off that a bit... talking to a few others b4 get caught up in this whole cycle of testing ---- if that nomogram is somewhat accurate - it will help me a lot..

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I think you should get both PSA and T tested periodically. Learning how to stay focussed on the present (mindfulness) really helped me get rid of anticipatory anxiety. It took a couple of months of daily practice until it became a habit of being. I suggest group classes.

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I wouldn't wait for symptoms. You'll only experience symptoms when the cancer is quite far advanced and the treatments are likely to be less effective than if they are started earlier.

That's not always true. There are some men here who had very high PSA values and were beginning to have symptoms, and then had an excellent response to treatment. But I think the odds favor the guys who keep on top of their PSA scores and deal with them when the get above some threshold.

I would also argue that ignoring possible trouble doesn't really reduce anxiety, at least for a lot of us. It may put a blanket over it but it stays in the back of your mind and bites you from time to time.

I think Tall_Allen's idea of practicing mindfulness is a good one. I'd also recommend a clear headed approach to the rest of your life. All of us will die. If PCa doesn't kill us, something else will - guaranteed. The thing to do is to make the most of what's left to us, to focus on what's important, to make our lives rich and meaningful.

At age 67, even with your GS 9 cancer, you've probably got years left and possibly a lot of years. Even if you have to get back on ADT, there are things you can enjoy - family, friends, books, music, hobbies, travel, charitable work for others, and much more. Sex is much harder on ADT than off it, but may still be possible and, even if it's not, love and physical affection are still just as possible and just as rewarding. The same things that made life worth living before a cancer diagnosis can make life worth living after it.

So my advice is, don't let anxiety about the disease dominate your life. Don't let it divert you from the things you most love. If you have to suffer hot flushes and find your athletic ability declines, well that's only one part of your life and not the most important part. You've got a lot of strength inside you. Use it. Develop it. Rely on it. Present an image to your family and friends of a strong man who cares about them and is not withdrawn into himself and afraid of the future. Even if you think you're just projecting an image I think you'll find that it becomes the real you. I think there are still some fine parts of your life ahead of you.

Best of luck.

Alan

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Good advice. As my MO stated, “we will see a problem in PSA results well before you you will feel pain”

I moved on from there and have PSA testing every three months. Testosterone test is every four months.

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Well stated! Take a bow....

Good Luck and Good Health.

j-o-h-n Saturday 08/04/2018 12:39 PM EDT

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Great Reply and so true , Thanks from me too!

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Thank u Alan ---- its the hand I was dealt, I'll need to play it out - good advice...

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Since you went to Memorial I am assuming that you are near NYC. FYI- Malecare along with Cancer ABCs has an excellent support group for men with advanced PC. You should join us. ( cancerabcs.org/support-groups/ ) Take note that the third Thursday meeting this month (August) has been cancelled for a summer break. We resume the regular schedule in September.

Joel

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Waiting for symptoms is the quickest way to let cancer get entrenched in your bones resulting in a lot of pain and a short life. This was what some doctors told me to do 17 years ago. I am glad I tossed out those opinions and treated every recurrence early. I am still here.

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I totally agree with AlanMeyer and TA. We each have to find a way to cope. What PC has done for me is to focus my attention on living. I do a lot more things that take me out of my comfort zone because why not? I treasure time with family and friends. I don't leave anything unsaid and am frankly much more concerned about the effects of my illness on others than on myself. Some old friendships and relationships have blossomed in a way they never would have without my diagnosis. I've had time to make arrangements to take care of others after I'm gone. I know deep down what's important in life. While it sucks to have PC, it has also provided certain benefits. Besides, no one gets off this rock alive, make the most of the time you have.

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Thought the PSA was a simple blood test. Wish I would have had one 2-3 years ago. No symptoms at all till it was too late. Never heard of a PSA test and was given yearly physicals by my Family doctor and by my employment. So my advice is do it. By the way, I'm also 67 yrs old and hoping for 2 good years..

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Yes agree with all don’t wait for symptoms. My husband has not had symptoms so far in ~18 years. Just treatment caused side effects.

Just get the PSA and T — easy.

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I too am 67 with a slowly rising PSA of 0.29 after 18 years. I see everyone suffering here with chemo or radiation . I am still partially incontinent but my quality of life is pretty good. i still watch my PSA, but am not interested in intervention at this time, unless my PSA takes off.Good Luck .

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