1. < Prostate Cancer

Confusing Messaging about Prostate Cancer

Posted by Climber @stevemaggart, Sep 11 9:11am

I won't go into great deal again, but I had an RARP and the pathology showed Gleason 9 Intraductal Carcinoma, locally advanced pT3a with cribriform present. My surgeon says that my cancer will come back and we have to be agressive with treatment. Yet, when I talk to people and read the blogs, it sounds to me that the perception is that PC is actually not all that life threatening, even in its advanced stages you can live for 15 years?
I can’t reconcile all of the messaging on treatments that we are going through and all the really nasty side effect and consequences if PC isn't that significant or serious, or at least fast moving, especially for a 70-80 year old person.
I point out to people that for a cancer that is not very serious, nearly 30,000 men die every year from it. But it is amazing how it is viewed by the public as a pretty insignificant and highly treatable disease. I would certainly like to put the cancer on ignore and not worry about it, the doctors don't seem to agree. Does anybody have similar feelings or any feedback?

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northoftheborder | @northoftheborder | Nov 1 5:17pm
In reply to @jc76 "@northoftheborder Yes! Great post! A couple of years ago my PCP at Mayo told me that..." + (show)
@jc76

@northoftheborder
Yes! Great post!
A couple of years ago my PCP at Mayo told me that PSA checks were now being prioritized again after many years of downplaying the need to test by medical society,

He said statistics started showing sharp increases in late-stage prostate cancers. It did not take long to see that not doing aggressive PSA testing was not catching prostate cancer in preliminary stages with a much higher rate of curing.

So, your post is right on!
My PSA was normal 3.75. However, I have a great PCP and did not like PSA rising each time he tested it and so referral to urologist, MRI, biopsies, and diagnosis of early-stage prostate cancer.

Every doctor I saw said that I had a great PCP and his insistence on testing you and then referral to urologist allow you diagnosis in early stages with very high cure rate.

Jump to this post

I wasn't getting routine PSA screening, because my family doctor was following so-called best practices from the CDC and elsewhere — she has changed because of my case. (She did mention it when I turned 50 and we discussed, so I might have gotten it if I pushed).

I'll never know if it would have made a difference. From papers I've read since, my kind of aggressive PCa often develops so fast that even routine screening doesn't catch it before it has already metastasised. And I had a roommate in hospital, a Canadian Afghanistan combat vet who had been getting routine PSA screening (the army has its own medical system with its own best practices), and annual screening didn't catch his in time.

In any case, I can't change the past. I'm getting excellent treatment now, and telling everyone who has a prostate and is willing to listen to start annual PSA tests at 50 (earlier for people of Black and Caribbean ancestry).

REPLY
1 reply
jcf58 | @jcf58 | Nov 2 8:23am
In reply to @jc76 "@northoftheborder Yes! Great post! A couple of years ago my PCP at Mayo told me that..." + (show)
@jc76

@northoftheborder
Yes! Great post!
A couple of years ago my PCP at Mayo told me that PSA checks were now being prioritized again after many years of downplaying the need to test by medical society,

He said statistics started showing sharp increases in late-stage prostate cancers. It did not take long to see that not doing aggressive PSA testing was not catching prostate cancer in preliminary stages with a much higher rate of curing.

So, your post is right on!
My PSA was normal 3.75. However, I have a great PCP and did not like PSA rising each time he tested it and so referral to urologist, MRI, biopsies, and diagnosis of early-stage prostate cancer.

Every doctor I saw said that I had a great PCP and his insistence on testing you and then referral to urologist allow you diagnosis in early stages with very high cure rate.

Jump to this post

I remember having a discussion with my PCP about 15 years ago when they started to downplay PSA tests. He told me it was still the best test they had to monitor trends and he would not go away from it. I’m so glad he did that and I went in to thank him after I had my Tulsa Pro done at Mayo in July.

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ewatson201 | @ewatson201 | Nov 2 1:30pm
In reply to @robertmizek "What a great post. My situation is similar to yours. I have a mutation where P53..." + (show)
@robertmizek

What a great post. My situation is similar to yours. I have a mutation where P53 function is lost. I met with my surgeon recently to discuss the “elephant in the room”. I asked his opinion on odds of being cured, overall survival, and likelihood of PCa returning after I stop Orgovyx and Zytiga in 19 months.

He was pleased as to my current condition after salvage RALP and IMRT. Forstbthe hood news: No co-morbidities, undetectable PSA, little weight gain, little loss of muscle mass and a positive attitude which he said might be the best thing I’ve got going. Then came the news I expected but didn’t want to hear. Cure is unlikely. He expects the PCa to return within 5 years. (My medical oncologist thinks I’ll go 7 to 9 years). If I’m lucky I’ll just die with the disease and not from it.

No one except fellow stage 4 cancer patients can grasp the seriousness of the situation. All others just believe that if you get PCa you get surgery and/or radiation and life continues as before and you’ll never have to think about it again.

If only life was that simple.

Jump to this post

We just got the same news yesterday. Have no clue where to start

REPLY
1 reply
grandpun | @grandpun | Nov 3 7:58am
In reply to @northoftheborder "I wasn't getting routine PSA screening, because my family doctor was following so-called best practices from..." + (show)
@northoftheborder

I wasn't getting routine PSA screening, because my family doctor was following so-called best practices from the CDC and elsewhere — she has changed because of my case. (She did mention it when I turned 50 and we discussed, so I might have gotten it if I pushed).

I'll never know if it would have made a difference. From papers I've read since, my kind of aggressive PCa often develops so fast that even routine screening doesn't catch it before it has already metastasised. And I had a roommate in hospital, a Canadian Afghanistan combat vet who had been getting routine PSA screening (the army has its own medical system with its own best practices), and annual screening didn't catch his in time.

In any case, I can't change the past. I'm getting excellent treatment now, and telling everyone who has a prostate and is willing to listen to start annual PSA tests at 50 (earlier for people of Black and Caribbean ancestry).

Jump to this post

Great advice to test for PC and when to seriously start. I may add that one should start earlier if there's a family history of PC. I've nagged my two sons (now 49 and 43) to start since me, my brother, and our dad has/had PC.

REPLY
1 reply
northoftheborder | @northoftheborder | Nov 3 2:04pm
In reply to @grandpun "Great advice to test for PC and when to seriously start. I may add that one..." + (show)
@grandpun

Great advice to test for PC and when to seriously start. I may add that one should start earlier if there's a family history of PC. I've nagged my two sons (now 49 and 43) to start since me, my brother, and our dad has/had PC.

Jump to this post

I called both of my younger brothers from my hospital bed and told them to start testing *now*.

REPLY
robertmizek | @robertmizek | Nov 3 8:02pm
In reply to @ewatson201 "We just got the same news yesterday. Have no clue where to start" + (show)
@ewatson201

We just got the same news yesterday. Have no clue where to start

Jump to this post

Sent you a private message.

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