Stage 4 PC Longevity: Anyone have prostate cancer more than 10 years?

Posted by ringmastr1 @ringmastr1, May 26, 2023

There is a lot of great info on this forum. I am 54 and was just diagnosed in January with metastatic Stage 4 PC. (Hip, L4, Sacrum, and a small liver lesion). My PSA has gone from 359 in January to .24 last week and I feel great! I am curious to know how many guys on this forum have been treated for more than 10 years and what your quality of life is like. It is stories like this that will give me (and others) more hope. Peace to you all!!!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@mikewo

Even though I am new to this, finished my 5 session proton radiation at Mayo Phoenix 47 days ago my life philosophy has always been "none of us get off this rock alive and that every day on this side of the grass is a great day, some are just better than others". I am 74 so I don't think the PC is going to get me and it will probably be something else. LIVE WELL!

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Ask about Zolodex to stop testosterone the fertilizer of PC It will come back in a few years even if they radiated the margins is my experience now on Xtandi as well as Xgeva

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Scientific studies have shown that for intermediate risk localized prostate cancer androgen deprivation therapy makes no difference in biochemical reoccurrence or overall survival in men over 70 and I am 74. I did not take the six-month Lupron shot as I self-castrated. I have been on testosterone replacement (Androgel) since 2008 when I stop my testosterone level drops to castrate levels in 60 hours. My radiation oncologist didn't believe me and had me tested and it came back at 12 ng/dl which is lower than a Lupron shot does according to their website. Why did I do it if it makes no difference? Just hedging my bets on a favorable outcome. If the PC does come back by then I will probably be 79 and it probably won't kill me anyway and I will die of something else anyway.

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@mikewo

Scientific studies have shown that for intermediate risk localized prostate cancer androgen deprivation therapy makes no difference in biochemical reoccurrence or overall survival in men over 70 and I am 74. I did not take the six-month Lupron shot as I self-castrated. I have been on testosterone replacement (Androgel) since 2008 when I stop my testosterone level drops to castrate levels in 60 hours. My radiation oncologist didn't believe me and had me tested and it came back at 12 ng/dl which is lower than a Lupron shot does according to their website. Why did I do it if it makes no difference? Just hedging my bets on a favorable outcome. If the PC does come back by then I will probably be 79 and it probably won't kill me anyway and I will die of something else anyway.

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What do you mean you "Self-castrated"???

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I have been on testosterone replacement since 2008. If I stop applying the gel my own system does not make any testosterone. That is what I did. I stopped applying my testosterone gel and 60 hours later after it is out of my system and skin no more Testosterone levels. Much faster than a Lupron shot which can take up to three weeks to kill your testosterone. I knew this would happen because I went off once before with my endocrinologist because she wanted to see if I really needed it. Then just before a blood test a few years ago I tried it for 60 hours before my blood draw and my T levels were 18. I have every blood test record of mine on a spread sheet going back to 2008.

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@mikewo

I have been on testosterone replacement since 2008. If I stop applying the gel my own system does not make any testosterone. That is what I did. I stopped applying my testosterone gel and 60 hours later after it is out of my system and skin no more Testosterone levels. Much faster than a Lupron shot which can take up to three weeks to kill your testosterone. I knew this would happen because I went off once before with my endocrinologist because she wanted to see if I really needed it. Then just before a blood test a few years ago I tried it for 60 hours before my blood draw and my T levels were 18. I have every blood test record of mine on a spread sheet going back to 2008.

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What is this gel you speak of and where do you get it What does it do and what reaction does it cause on the skin

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It is an alcohol based gel that you apply to the shoulders and stomach. The testosterone in it is absorbed through the skin. It comes in a pump bottle or a 5 gm packet. Your doctor can order it from your pharmacy. The alcohol may dry out your skin but it never bothered me. Google "Androgel" and I am sure it will all be explained. Using it daily keeps your testosterone level at a constant unlike the shots which give you a peak then a valley. I only used the shot twice when I went on scuba diving vacations because the gel would wash off in the ocean.

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@mikewo

It is an alcohol based gel that you apply to the shoulders and stomach. The testosterone in it is absorbed through the skin. It comes in a pump bottle or a 5 gm packet. Your doctor can order it from your pharmacy. The alcohol may dry out your skin but it never bothered me. Google "Androgel" and I am sure it will all be explained. Using it daily keeps your testosterone level at a constant unlike the shots which give you a peak then a valley. I only used the shot twice when I went on scuba diving vacations because the gel would wash off in the ocean.

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Warnings
You should not use AndroGel if you have prostate cancer, male breast cancer, are pregnant, or are breastfeeding.

Testosterone can cause birth defects in an unborn baby. A pregnant woman should avoid coming into contact with this medicine, or with a man's skin where the medicine has been applied.

Topical testosterone is absorbed through the skin and can cause side effects or symptoms of male features in a child or woman who comes into contact with this medicine. Call your doctor if a person who has close contact with you develops enlarged genitals, premature pubic hair, increased libido, aggressive behavior, male-pattern baldness, excessive body hair growth, increased acne, irregular menstrual periods, or any signs of male characteristics.

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@melcanada

Warnings
You should not use AndroGel if you have prostate cancer, male breast cancer, are pregnant, or are breastfeeding.

Testosterone can cause birth defects in an unborn baby. A pregnant woman should avoid coming into contact with this medicine, or with a man's skin where the medicine has been applied.

Topical testosterone is absorbed through the skin and can cause side effects or symptoms of male features in a child or woman who comes into contact with this medicine. Call your doctor if a person who has close contact with you develops enlarged genitals, premature pubic hair, increased libido, aggressive behavior, male-pattern baldness, excessive body hair growth, increased acne, irregular menstrual periods, or any signs of male characteristics.

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Yes, I know all this. I have been taking it since 2008 which is over 15 years. I have read the warning labels many times. I will start back on it after my first PSA reading after radiation which is July 18. With my testosterone level at 12 ng/dl without it I feel like crap and no drive at all. Studies have shown that men OVER 70 YEARS OLD having your testosterone shut off by Lupron make absolutely no difference in Biochemical reoccurrence or overall survival after proton radiation therapy. Since I am 74, I only went off it to cover my bets because many men just have radiation without androgen deprivation. Thanks for your response.

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I'm not quite sure how this thread has shifted to discussion of androgen replacement, but when a study says "[ADT] makes no difference [in BCR and overall survival after 70]," it may not mean what you think it means. Studies always look for statistical significance in samples. So this statement most likely means the study (as designed and conducted) was not able to measure a statistically different result, not that in the real world there is no difference. This is meaningful not because men live just as long with or without the disease and/or the treatment, but because every treatment (and every man's life) is uncertain, with time and chance happening to us all.
So, if you decide not to treat, or to vary a treatment protocol, you're always taking an [inexactly] calculated risk. In this case, we're dealing with time to death estimates that are difficult to measure in any study. To give an example, a recent treatment for brain cancer "miraculously" increases mean survival from 18 months to 36 months. That's much easier to measure than increasing mean survival rates of 15 years (from PC) in men over 70 whose mean survival rate overall may also be around 15 years....

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