My story...

Jim I must apologise for my callous remarks earlier in the post. I have to admit at times I am angry that in my case It was not caught in time. I was only 42. Who knew I was a couple years too late for a cure. I know its scary but you will be just fine. That still did not give me the right nor the moral high ground to chastise you for an outpouring of truly human emotions. Please accept my humple apology. Todd

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dx:06/03/06

Age at dx: 42 age now 45

Treated for sciatic nerve pain 6 months prior to dx.

Heavy amount of blood in urine Unable to urinate 

Lung x-ray for pnumonia revealed multiple lesions in each lung

P.S.A. at time of dx. 3216.14

Began lupron and casodex

Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.

Bone scan revealed possible bone involvment in the pelvic area

Biopsy 12 of 12 cores positive gleason 3+4=7

P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09

Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months

Cat Scan 12/12/08 Prostate normal size and shape. No tumors detected. Left lung clear of all nodules right lung showing only benign scar tissue. Lymph nodes normal

Bone Scan 12/24/08. Clean!!! went off casodex January 4 2009

Current psa 2/13/09 .16

Latest P.S.A. 0.05 newest P.S.A. undetectable

Hi there...

I appreciate all the posts. Yes, I'm feeling a lot better lately. My wife has already read Dr. Strums book! We just got it yesterday. She is an incredibly fast reader. I just got started reading the book the doc loaned us. Can't remember the title but it's in a question and answer format. I will start Dr. Strums book this weekend. The more I read and learn, the more I understand. It's getting a lot more normal for me to think of my problem without my brain going all viral on me.

I know what you mean by information overload. But I'm focusing in on my cancer. I will know everything that is possible to know about it before any treatment option will be considered. I want to know my enemy...

PS I have tried to make a signature file with my info, but I can't figure out how. Anyone know where I should be looking? Thanks!

tatt2man said...
Jim -
I have to commend you for how far you have come from your first posting. You were not being woosy or weak or whatever with your initial reaction. You were being human. And you certainly handled well the onslaught of compassionate well-meaning warriors in this battle. Welcome to information-overload !

Hopefully now you can see the forest for the trees - the note pad is a great tool, especially when it comes to bringing questions to the next doctor's visit. Oh yes, (if you can) bring your wife / companion/ partner to the doc with you - they'll remember what you forget - and be able to see it from a different perspective, to help you sort the various pathways on this journey.

Major hugs to you and your wife

BRONSON & STEVE

I had been making progress recovering from the biopsy. At about 6 weeks post biopsy I got very sensitive down there. It was like my prostate was sore. My urine was dark, and even though I was on FloMax it was no longer working. I went to the urologist and he gave me some antibiotics, and some RapaFlo. I also gave a urine sample. I learned a long time ago to properly troubleshoot a problem you shouldn't change more than one thing at a time. I took the antibiotics but stayed on FloMax. After only half a day it was feeling better down there. Been 5 days now and it's back to normal. The urine sample was negative for bacteria. So far there is no explanation for my symptoms and why it went away.

I have had a bit if a setback. I'm finding it difficult to get the research even started for doing SA. I have even forgotten I have PCa a few times. It felt good to put it aside for a while, but at the same time feel awful cause I'm sick and need to deal with this...

Even though the visit to the urologist wasn't planned I did discuss things with him. He actually backed way off on his insistence I get a treatment now. He even let me in on some details of how he treats this. He puts in the seeds, but he uses an $80,000 computer system to define the optimum position of the pellets for the most accurate distribution of radiation within the prostate, and the most accurate way to ensure the dosage falls of as close as possible to the surrounding tissue.

Before the biopsy I had symptoms of enlarged prostate. I could handle it on my own. I knew my father had an enlarged prostate so I was just avoiding the inevitable by not seeking medical attention for this. I knew I would be on Avadart for the rest of my life, so I put off going. So at this point I feel I really have to stabilize my prostate situation before I can have someone beat the hell out of it. :P

If anyone out there reading this has any experience with treating Low Risk PCa with enlarged prostate issues I would like to here from them. What I'm trying to get at. Will I still have all of the problems I am currently having after treatment? I know the type of treatment will matter as well.

So I'm probably not the "Your case is exactly the reason for the current flap of giving men psa tests." that JohnT said before. I would think the cases for the flap are people with otherwise normal prostates.

So I go this Friday to see the urologist. We will talk about the PCa and what to do about it.

There's my update, such that it is. :P

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48, Caucasian, 5' 8", 200lb, general good health.

PSA: 8-7-09 3.22, 11-13-09 4.25.

Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3.

Diagnosed: 2-12-10.

Treatment options being considered: AS, Proton Therapy, HIFU.

Mode: Learning.

Process: Reading Dr. strums book, Determine second opinion specifics.

Yeah I guess I did misunderstand. I'm really sorry but I'm a pretty private person, public yet anonymous forums aside. :P 

erbob said...
Jim, I'm sorry that I gave you the impression that I had hoped for YOU to contact my son there in the Peoria area. No, I'll be doing that myself. I merely wanted to possibly make contact with you on an upcoming trip that I'll be making in May, stopping off in Peoria (Mossville) to see my son and his family while on my way from Colorado up to the Chicago Prostate Cancer Center. I'll be going for a volume study up in Westmont, IL and hopefully will then get the seeds implanted later that same week. My prostate is also large and they have placed me on Lupron and Bicalutamide to shrink it down to a workable level for the seeds implanting procedure. You had indicated that six weeks post biopsy, that you felt very sensitive down in the prostate area. I guess I was lucky as I had absolutely no aches or pains that were associated in any way with the biopsy. We are all built differently.

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48, Caucasian, 5' 8", 200lb, general good health.

PSA: 8-7-09 3.22, 11-13-09 4.25.

Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3.

Diagnosed: 2-12-10.

Treatment options being considered: AS, Proton Therapy, HIFU.

Mode: Learning.

Process: Reading Dr. strums book, Determine second opinion specifics.

Jim is sick said...
If anyone out there reading this has any experience with treating Low Risk PCa with enlarged prostate issues I would like to here from them. What I'm trying to get at. Will I still have all of the problems I am currently having after treatment? I know the type of treatment will matter as well.

I have low risk PCa with an enlarged prostate. I am currently on Active Surveillance. My doctor says that many men live with an enlarged prostate and it isn't a problem. It hasn't been a problem for me so far.

Reading through your post it seems that you're returning to the same urologist for advice. And his advice, of course, is for him to treat you the way he wants to treat you. If I were you I would certainly seek out other opinions from other doctors and see what alternative treatments they offer. When you've collected enough opinions and different options, I would make firmer decisions on how to treat your cancer. Right now, you're only being fed one line of thought. open up your mind to all the possibilities before proceeding.

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Age: 53 6' 0" Weight: 170 Caucasian

Rising PSA over the last six years (from when I started being tested) from 3.9 to 5.2 to 4.6 to 4.5 to 4.9.

DX with PC in January 2009 after biopsy. Bone scan--negative

Consulted Cedars-Sinai Beverly Hills urologist--recommended surgery
Consulted Cedars-Sinai Beverly Hills radiologist--recommended IMRT
Consulted San Diego Cyber-Blade doctor--recommended treatments
Consulted Long Beach radiologist--recommended IGRT
Consulted Loma Linda radiologist--recommended Hypo-fractionated Proton treatments

Insurance approved any treatment I wanted.

Consulted Marnia del Rey urologist Dr. Scholz.
Dr. Scholz referred me to Dr. Bahn for a Color Doppler test.
Scholz and Bahn recommended Active Surveillance, some diet changes, and steady exercise.

I am currently on Active Surveillance.