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.

What did they put you on to get PSA so low and how long did it take Describe your journey pls

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@melcanada

2018 rad 40 days then Zolodex
2020 stage 4 put back on Zolodex after L2 radiated 1,5 inc cancer out
Jan 2023 L1 and T 10 T 11 so put on Xtandi or Enzalutamide and PSA dropped from 9.8 to 1,7 in a month added Xgeva for bones 1200mg Calcium daily
Prayer helps I feel great back issues don't allow for long walks without sitting L1 would noot be radiateed as to close to L2 with 1.5 inc cancer
78 and they say this should give me 5 years even if Xtandi stops working there are other remedies to control never cure Just like diabetic control it

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Thanks for sharing. Prayer does help.

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@rxharleydude

So, am I correct that you do NOT have prostate cancer? But you have low T and are treating it with Androgel.

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No, I do have low T and have been on Androgel since 2008 until I stopped it a couple of months before my 5 proton radiation treatment for unfavorable intermediate risk prostate cancer. I had 2 cores that were 4-3 and three that were 3-4 all from the area of the 7mm lesion out of the 30 core fusion guided transperinal biopsy. The rest of my 120 gm prostate was clean. My PSA was 2.9 and had been between 2.3 and 2.9 for 5 years and almost did Active surveillance rather than radiation. I had a PSMA Pet scan that showed that the cancer had not spread but I was unwilling to risk it escaping the prostate, so I went with the radiation. I am 74 so the studies show with me the androgen deprivation really made no difference. By stopping the Androgel my testosterone level dropped to 12 ng/dl without a Lupron shot. The boys got really lazy since 2008 and I will be very interested to see what my levels are when I get my first bloodwork back after 7/5/23 which will also give me my first post radiation PSA. I wonder if the boys have made any kind of comeback or are they still asleep. The only reason I stopped taking the androgel since testosterone at my age makes no difference in biochemical reoccurrance or overall survival is I was just hedging my bets.

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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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So, am I correct that you do NOT have prostate cancer? But you have low T and are treating it with Androgel.

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@spino

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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Totally agree. I'm not experimenting on myself. I'm following doctor's orders and staying educated about current treatment options.

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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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@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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@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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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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