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High PIN grade tumor & pain

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Posted 3/27/2007 1:10 PM (GMT 0)
I'm writing in for my friend (who hates the internet and asked me to help out) He needs to hear about the experiences of other men with situations similar to his...

V. is 55, of afro-cuban heritage. His PSA, over the last couple of years has gone from 10.5, back down to 1.5. He has a high PIN grade tumor, directly in the center of the prostate, which the doctors assure him, will become aggressively cancerous at some point. He's had two biopsies which haven't shown cancer yet - and it's been nearly two years since his last biopsy.

V. is a body-builder and generally very healthy, with a positive outlook on life. So far, the tumor hasn't caused any change in his sex life or ability to get an erection.

What does happen is that, now and then, he gets incredible pains that start in the region of his prostate. These are bad enough that he can't stand up when they happen. For long spells he's fine - but these seem to strike out of the blue. The other day, he had pain so severe that he thought he might have to call an ambulance.

He has seen his doctor and is going for blood and urine tests. His doctor is going to call the specialist, as well.

What he wants to know is whether other men with prostate tumors have this kind of pain.

I will be so grateful to anyone who shares their experience - and I will pass it on immediately to V.

Thank you for reading.
Posted 3/27/2007 2:43 PM (GMT 0)

oops .. double post

 

tanya

Posted 3/27/2007 2:44 PM (GMT 0)
I really haven't heard of this. Most I have read on here (and us too) have no pain associated with their prostate cancer tumors, and would not even know of them without the biopsy saying they had cancer.

Hopefully someone else can give you some more insight? It does sound very unusual to me. Do they have any idea of how large the area with PIN is? Is his prostate enlarged at all? Could it possibly be prostatitis? (just off the top of my head it sounds like he may have had an infection when his PSA was 10.5 ... and then when it was treated went back down to 1.5).

Sorry can't be of more help.

Tanya
Posted 3/27/2007 6:01 PM (GMT 0)
Your friend should consider active treatment sooner than later with a transition zone tumor. These tumors can grow large causing urinary/pain problems early on and......they tyically have higher PSA's but are actually considered easier to predict. Transition zone tumors tend to have a better outcome compared to other locations when considering tumor volume because of their location. The flairs in PSA are probably tied to a chronic inflamation issue. He does need to see a specialist.
Posted 3/27/2007 11:54 PM (GMT 0)
I did not have pain or other symtoms --only the PSA and biopsy gave me a diagnosis--please keep us posted here-we are all in this together
-George
Posted 3/28/2007 8:30 PM (GMT 0)
My husband did have pain. It started last summer and his PSA was 2.6. The doctor treated it as an infection and it never totally went away. Then in October, it flaired up again, even worse. He was out of town for a few weeks, so his doc called in an antibiotic and made Kurt promise to come in for PSA when he got home. (I just found this part out last week!) He didn't go in and come December, the doc's office was calling 2-3 times a week trying to get Kurt to come in. We went on vacation after Christmas and came home the first week of Jan. He was still, constantly feeling pain. He finally went in for PSA and it had gone up to 4.1. The doc said biopsy and Kurt said infection. As the biospy neared, Kurt's pain increased to the point where he was actually ready for the biopsy, but still believed that after words they would tell him he had an infection and put him on meds. Unfortunatly, we are here, so you know the results. He had constant pain between the diagnosis and the surgery (One and 1/2 months).
Kurts original diagnosis was gleason 6 on both sides, stage T2c with nothing coming up on the bone scan and some enlarged lymph nodes, but nowhere near the prostate. His post surgery path report was the same, however, his cancer had reached the capsule, it just had not penetrated yet. Who knows what would have happened if we waited a week, or a month. We most likely would be facing a different outcome. We owe HUGE thanks to everyone here for continue to encourage us to push forward and expecially to become our own advocates!
As you will see here, pain is not the norm, but it can happen. Good luck to your friend. Courtney
Posted 3/28/2007 10:56 PM (GMT 0)
jadeonion...Thank you for coming to this forum.  We all learn everytime we read and everytime we post. Pain is a subjective and interesting topic.  I suffer chronic pain(back.hip & legs), but had never considered it part of my prostate experience. 

When you described prostate pain, it sort of rang a bell with me.  I remember three times in the six months before I was diagnosed with prostate cancer where pain was part of my consciousness. Three times after a rather intense orgasm, I experienced a painful spasm in what I now know "was" my prostate.

No doctor has ever asked for this anecdotal information.  I wonder if it might have been an early warning of problems to come?

Jadeonion...I hope you can get some answers to your questions.

 

Posted 4/1/2007 3:51 AM (GMT 0)
jadeonion

interesting screen name! from my research, pain relating to prostate cancer normally only occurs in the advanced stages of cancer, usually when it has escaped from the prostate capsule and has metastasized in the bones. this does not necessarily mean that your friend has prostate cancer. however, any sign of severe pain in the body is usually very serious and requires prompt medical attention. tell your friend to pursue this with haste with the best doctors he can find. there has to be an explanation and he needs to get one.
best of luck to your friend. it is true that high grade PIN can lead to prostate cancer and needs to be monitored closely.

dave
Posted 4/1/2007 10:04 PM (GMT 0)
My gratitude to all of you. He recently saw his GP, who did a physical exam, took a urine sample and scheduled blood tests. He's waiting now to see the specialist and if he isn't given an appointment for another biopsy, he's changing doctors. His PIN is low/normal...and while I understand that it doesn't mean all that much, it's a little hopeful.

In case it seems that there is undue neglect on his part, let me point out that our province's medical system is now in a state of full disaster. Months, sometimes to see a specialist or get tests, and it only "fast tracks" if there is a diagnosis of cancer. Often, sadly, by the time the diagnosis is reached, it's too d*mn late to treat. There's no way that V has the money to resort to out of country or private treatment, unfortunately.

I really appreciate the replies, folks and may be back to tug on your sleeves again... Meanwhile, wish him good fortune. He'd really like to see his grandkids for a while longer...

*Jadeonion. Catches the imagination, doesn't it?

Thank you all again. I tried replying earlier and was rudely booted off Mozilla Firefox and given an error message.

J.
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