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Hi All:

I hope this Email finds everyone well.  I am a 74 year old male.  I have had my J-Pouch for about 1 and a half years.  It was done at Johns Hopkins Hospital by Dr. Bashar Safar, a great surgeon and wonderful person.  So far so good; going to the bathroom about 4 times a day and eating almost anything I like without a major problem.  And I am playing golf and exercising almost everyday.  I feel good.

My problem is I had a PSA test.  It was a 9 and they say men of my age should have a score of around 5-6.  And my general medicine doctor wants me to have a biopsy of my prostate.  I am not inclined to having this done.

Any thoughts recommendations would be appreciated.

Nick 

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Nick,

I have a history of Prostate Cancer in my family. My grandfather died with it although not from it, uncle had prostatectomy and now my 82 year old father has an inflamed prostate. The doctors will be concerned when there is a big jump in PSA and yours is a big jump. I think you should have the biopsy done. My father had both a cystoscopy and a biopsy. He just has an inflamed prostate but due to the family history we are watching it. Most Prostate cancers are slow moving but it's not something to fool with and if something is going on whether cancer or prostatitis it will cause you to eventually start urinating frequently. This is a very common issue in males north of 70. FYI I am 57 and I run 1.3-1.4 on PSA consistently for many years but I anticipate issues once I get north of 70, assuming I make it to then.

Good luck to you.

Last edited by CTBarrister

Routine PSA testing isn’t recommended for men aged 70 and above. Whoever ordered it did you no favor. Even the American Urological Association generally advises against this, and they just love urological surgery. Similarly, the US Preventive Services Task Force advises against this screening test at age 70+. Prostate Cancer is a usually slowly progressing disease, and the PSA test has plenty of false positives.

An older friend of mine was in a similar situation last year and I advised him to ignore the test result. Following up on it is more likely to do harm than good.

@Nick10136 posted:


I had a PSA test.  It was a 9 and they say men of my age should have a score of around 5-6.  And my general medicine doctor wants me to have a biopsy of my prostate.  I am not inclined to having this done.

Any thoughts recommendations would be appreciated.

Nick

Yeah, I agree with Scott.
UK guidance appears to be same as to what Scott has referenced to.

My Father had the PSA test and was referred to a specialist, only to be told, the test shouldn’t have been done due to his age as the results would be high.

Last edited by strange

Thanks to everyone for their comments.  I see my doctor on Wednesday to discuss the score of 9 for my PSA test.  At this point I am inclined to tell my doctor, "I understand the implications of a high score but also understand sometimes there are false positives and due to my advanced age, 74, I am going to take my chances and forgo any further tests related to prostate cancer."

Nick

Nick,

That's a reasonable course of action as long as you have no symptoms, but if your urinary function begins to change and you start going more frequently or you are losing continence you may need to revisit the testing issue. A biopsy is one test and the cystoscopy is another.  This is my father's situation.

I would also mention to your Doctor the information in Scott and Strange's posts on US and UK standards on PSA tests and ask him what his reasoning is. Just tell him you did some research on it and how does he really know that any recommended testing isn't based on false positive testing.

Last edited by CTBarrister
@CTBarrister posted:

Nick,

That's a reasonable course of action as long as you have no symptoms, but if your urinary function begins to change and you start going more frequently or you are losing continence you may need to revisit the testing issue. A biopsy is one test and the cystoscopy is another.  This is my father's situation.

I would also mention to your Doctor the information in Scott and Strange's posts on US and UK standards on PSA tests and ask him what his reasoning is. Just tell him you did some research on it and how does he really know that any recommended testing isn't based on false positive testing.

Urinary function (and symptoms) are a very different thing, having no connection to a PSA test. These symptoms generally aren’t related to prostate cancer, but rather benign prostatic hypertrophy. The treatment of that, while unpleasant, is often a sensible choice for folks in their 70s or 80s. If prostate cancer is causing symptoms the decision-making is very different from a screening test with no symptoms.

My fathers' symptoms coincided with rising numbers on his PSA tests. His PSA is regularly checked and he has an inflamed/enlarged prostate which is causing the symptoms. Prostatitis. I have had it as well.

There is more info here, but the point is that prostatitis will show up as raised PSA levels, and while it may not be cancer, it will start causing symptoms as it gets worse and goes untreated by the stagnating patient (couldn't post the direct link so look under prostatitis at this website):

https://www.urologyhealth.org/urologic-conditions/prostatitis-(infection-of-the-prostate)

As long as Nick has no symptoms he does not need to worry about treating it, the point is that this is what could be elevating his PSA without him having symptoms yet. If he develops symptoms he can go for the tests outlined in the article above.

Last edited by CTBarrister

I am a woman but I am very surprised with a lot of these comments on here. I would recommend getting it biopsied. What have you got to lose but getting a definite confirmation? I think its worth it to know for sure. You have come too far to not get confirmation. Its your choice of course but definitely get it done. 

Lauren, you are giving glib medical advice without a shred of proper medical information. If you actually want to know what he has to lose, a little reading would go a long way. 

Biopsy is not without risk. There is a specific risk of developing prostatitis due to getting the biopsy. The question is whether there is sufficient evidence to get the biopsy. My feeling is that if the urinary symptoms change, that would tip the balance in favor of biopsy. I should note that my father's symptoms started with nocturia, which drove him bananas. The cystoscopy is a horrific procedure that sounds like it's straight out of the Middle Ages, but my father manned up and did it because the symptoms were driving him nuts. I know this is all likely in my future because it's not skipping generations with the males in my family once they get north of 75.

Last edited by CTBarrister

My husband is going through this decision making also. Our son is a physician (gerontology) who also suggests that psa testing is not appropriate for older men, especially without symptoms. He also stated that it's often very slow growing. It  (prostate cancer) will frequently show up in autopsies without having had caused any problems. Identifying it and treating it (surgery) could result in a "cure is worse than what ails" situation because of the slow growth.  He is however, recommending my husband undergo the bioppy as he is younger (63 years) and has a direct family history (his father) . I don't know what is considered 'older men' though as we were specifically talking about his father/my husband. 

I've come across some pubmed info re genetic  testing (like they commonly do for familial breast cancer). Identification of a particular gene mutation seems to be associated with a more aggressive form of prostate cancer although I may not be understanding it correctly. Our son is not familiar with this particular gene testing and recommends it be raised with the urologist.

I wish you well with all of this and hope for a good outcome for you. 

@JHendrix posted:

My husband is going through this decision making also. Our son is a physician (gerontology) who also suggests that psa testing is not appropriate for older men, especially without symptoms. He also stated that it's often very slow growing. It  (prostate cancer) will frequently show up in autopsies without having had caused any problems. Identifying it and treating it (surgery) could result in a "cure is worse than what ails" situation because of the slow growth.  He is however, recommending my husband undergo the bioppy as he is younger (63 years) and has a direct family history (his father) . I don't know what is considered 'older men' though as we were specifically talking about his father/my husband. 

I've come across some pubmed info re genetic  testing (like they commonly do for familial breast cancer). Identification of a particular gene mutation seems to be associated with a more aggressive form of prostate cancer although I may not be understanding it correctly. Our son is not familiar with this particular gene testing and recommends it be raised with the urologist.

I wish you well with all of this and hope for a good outcome for you. 

The advice against screening applies to men aged 70+. The recommendation for men aged 55-69 is more nuanced. Here’s a useful infographic for that age group: https://www.uspreventiveservic...ome/GetFileByID/3795

@Nick10136 There are a lot of people on the J-Pouch Forum that do not know what respect is but I choose to ignore it and keep speaking my truth. Having the possibility of prostate cancer can change your life, especially you being 74 years old. I would much rather you deal with biopsy side effects rather than the possibility of having cancer. I think you should go ahead and get total confirmation. Maybe you were meant to have that test done so you could get it checked out. 

You definitely do not want to have to wonder" what if". Having total confirmation can go a long way. I urge you to get the biopsy but it is entirely your choice. I hope you choose well. 

By the way, a lot of people have had problems/ cancer without any warnings/symptoms. It is possible. I know biospies stink but its worth it!

Sending lots of light you way

Last edited by Lauren Of Emerald City

@Nick10136 There are a lot of people on the J-Pouch Forum that do not know what respect is but I choose to ignore it and keep speaking my truth. Having the possibility of prostate cancer can change your life, especially you being 74 years old. I would much rather you deal with biopsy side effects rather than the possibility of having cancer. I think you should go ahead and get total confirmation. Maybe you were meant to have that test done so you could get it checked out. 

You definitely do not want to have to wonder" what if". Having total confirmation can go a long way. I urge you to get the biopsy but it is entirely your choice. I hope you choose well. 

By the way, a lot of people have had problems/ cancer without any warnings/symptoms. It is possible. I know biospies stink but its worth it!

Sending lots of light you way

 (Apologies to the OP for this off-topic message)

Lauren, your lived experience will be treated with the utmost respect here by virtually everyone. The support you express for other members is similarly something to be held in high regard. OTOH if you express made-up medical ideas and then frame them as strongly-worded advice, those ideas should be exposed as problematic, and sometimes directly harmful, even when they are well-intentioned. A proper response to such a challenge would be to either learn more about the issue or at least reconsider the idea. Simply declaring it more loudly doesn’t make it any more reasonable.

I may be misreading this but I'm wondering if the suggestion that men 'over a certain age' are advised against regular PSA screening can sound like the message is 'after a certain age you are less valuable'. If that were the interpretation, that would sure sting.  In my understanding it has to do with the fact that prostate cancer is so frequently so very slow growing that one will end up dying of something else before prostate cancer thus sparing men treatments/surgeries and the often resulting side effects of the treatments/surgeries. I do believe that's been pretty well documented.

I hope this might help you Lauren. (As I said, if it's read that one just shouldn't bother after 70 years..... it sure would seem unreasonable and unfair)

Sorry none of this really helps you Nick. Hopefully some thorough discussions with your doctor will assist your decision making.

(Thanks for the chart link Scott. It spells things out pretty well although I'm still left wondering about the gene mutation that may be associated with a more aggressive form) 

JHendrix,

You are correct it has to do with the slowness of the cancer and not "you are not valuable any more." My grandfather developed prostate cancer in his early 80s and the Docs told us, "he will die with it but not from it." And that forecast came true. I don't recall his cancer being aggressively treated and the cancer may not have been treated at all, just the symptoms which were to the urinary function. He ultimately died at age 89 and the cancer wasn't his cause of death.

My father has the same symptoms now at age 82 that Grandpa had at same age when he developed prostate cancer. But Dad has prostatitis. The treatment is pills and they don't seem to be totally ameliorating his symptoms. He is urinating frequently. So with him because of symptoms and family history they are keeping an eye on it which is why he had both the biopsy and the cystoscopy. These are not fun tests and they are definitely not risk free.

Prostate cancer has the highest 5 year survival rate of any cancer- close to 98% and just a percentage higher than thyroid cancer. I had thyroid cancer stage 3 and have survived it by 5 plus years now. Both of these cancers are usually slow to metastasize, but in my case it did metastasize into 2 lymph nodes. The 2 nodes and the thyroid were surgically removed and I was then irradiated with 157 millicuries of radioactive iodine and was good to go. My uncle who had prostate cancer in his 60s did have a prostatectomy which is how they often treat it when it hasn't metastasized out of the prostate which it usually doesn't. He took a sabbatical from his college professor job one semester. After surgery he had temporary severe urinary incontinence and wore adult diapers for a while. But he got over that and is now healthy and retired and 73.

I must report that my neighbor who passed away a few months ago same age as me (57) had undiagnosed prostate cancer which metastasized throughout his body and into his bones. By the time he had any symptoms was too late to do anything. He was an alcoholic and didn't take good care of himself and was unfortunately involved in a messy divorce when he found out he had the cancer. I think this was an unusual outcome. He probably hadn't had a PSA test in years. I didn't ask him but in talking to him I got the impression that he never thought anything was wrong until it was too late and in his bones.

It was same with my cancer as far as no signs or warning. My doctor saved my life on routine annual exam by spotting swollen lymph nodes in my throat which I never had noticed nor would have noticed despite shaving the area every day. No symptoms and the swelling was imperceptible. Cancer can sneak up on you silently. It did on me and probably did on my unfortunate neighbor God Rest his soul.

Last edited by CTBarrister
@JHendrix posted:

I may be misreading this but I'm wondering if the suggestion that men 'over a certain age' are advised against regular PSA screening can sound like the message is 'after a certain age you are less valuable'. If that were the interpretation, that would sure sting.  In my understanding it has to do with the fact that prostate cancer is so frequently so very slow growing that one will end up dying of something else before prostate cancer thus sparing men treatments/surgeries and the often resulting side effects of the treatments/surgeries. I do believe that's been pretty well documented.

I hope this might help you Lauren. (As I said, if it's read that one just shouldn't bother after 70 years..... it sure would seem unreasonable and unfair)

Sorry none of this really helps you Nick. Hopefully some thorough discussions with your doctor will assist your decision making.

(Thanks for the chart link Scott. It spells things out pretty well although I'm still left wondering about the gene mutation that may be associated with a more aggressive form) 

I appreciate you reaching out to me and explaining things respectfully, I wish more people were respectful in that sense, especially on here. I respect your opinion about everything you said but I respectfully disagree. 

I hope we can agree to disagree and just keep the peace. 

I do hope you're going to feel peaceful with whatever you decide Nick. This forum has resulted in a mix of thoughts, medical information, as well as personal advice. It's a tough decision but  it is your decision to make in consultation with your doctor. I hope we haven't made it more complicated.

My husband has opted  to go ahead and have the biopsy but he hasn't decided on any particular course of action he would take should it be a cancer diagnosis. It sure isn't straightforward is it? Hopefully you'll let us know what you decide but I can sure understand if you choose not to!

Take care all. 

@JHendrix posted:

I do hope you're going to feel peaceful with whatever you decide Nick. This forum has resulted in a mix of thoughts, medical information, as well as personal advice. It's a tough decision but  it is your decision to make in consultation with your doctor. I hope we haven't made it more complicated.

My husband has opted  to go ahead and have the biopsy but he hasn't decided on any particular course of action he would take should it be a cancer diagnosis. It sure isn't straightforward is it? Hopefully you'll let us know what you decide but I can sure understand if you choose not to!

Take care all. 

That is a very positive statement! Definitely let us all know how your husband's biopsy goes. Good luck with everything!

Hello All:

This is Nick who began this discussion about enlarged prostate and a high (9.3) PSA test.  A urologist from Johns Hopkins Hospital told me before anything else happens I should get a 4K blood test which determines whether or not to have a biopsy of one's prostate. I will let you all know what happens.  Thanks to all for your comments and recommendations.

@Nick10136 posted:

Hello All:

This is Nick who began this discussion about enlarged prostate and a high (9.3) PSA test.  A urologist from Johns Hopkins Hospital told me before anything else happens I should get a 4K blood test which determines whether or not to have a biopsy of one's prostate. I will let you all know what happens.  Thanks to all for your comments and recommendations.

I would rather you get the biopsy ASAP but I am glad you are looking further into this instead of just dropping it like other people said to. Thank-you for looking further into it

And okay let us know, I hope all is well!

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