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Just Diagnosed: Gleason 4+5
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kbota posted:
First, thanks to Dr Moul and others for this forum. It's an outstanding place to learn more about Pca and become more informed patients. Now to the hard stuff.
Age 57; 6'2", 225 lbs, and in otherwise healthy condition. Met GP doc for routine annual physical this year, and psa was 3.07 which was up from last years, 2.26. DRE with GP was negative. Did a free psa which came back at 18%. Referral to urologist.
Urologist performed DRE and felt a nodule. Biopsy came back with following summary;
Poorly differentiated adenocarcinoma
Gleason 4+5 with Tertiary 3
Tumor location: R Base, R mid, R apex, L Base.
Tumor volume: Seven cores from less than 5% to 60%(R Apex was 60%) (This is from a total of 18 cores.)
Perineual invasion; None seen

Urologist started me on Casodex 50, and recommends radical prostatectomy with removal of associated lymph nodes(in 4 to 6 weeks), followed by Lupron injections.

I did a bone scan and cat scan this morning. Results tomorrow evening hopefully.
I am having such a hard time accepting this since I feel sooo darn good otherwise. Energy levels are good, and I can do virtually anything I did at age 40, albeit at a slightly slower pace. This is devastating news to my wife and I, as I just retired a year ago, and just completed building new home a couple of months ago. Life was just starting to be really good. Now this. We can't stop crying.

I know every case is unique, but, based on others with similar factors, how would you expect this to evolve? How much time do I have?
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Amelia_WebMD_Staff responded:
Hi kbota,

My heart goes out to both you and your wife. I hope that things went better than you had expected and hope that you keep us posted on your results.

Please try your best to be strong and positive. I know that this is definitely easier said than done, but mind and body work in mysterious ways.

You are in my thoughts and prayers and I hope that we hear back from you soon.
 
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Fairwind replied to Amelia_WebMD_Staff's response:
You might want to move your thread here..

http://www.healingwell.com/community/default.aspx?f=35
 
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DUKE MEDICINE
Judd W Moul, MD responded:
I have reviewed your summary and am sorry for the delayed response. I hope the bone scan and CT scan were okay. I would need these results to be able to give you any kind of prognosis. We are seeing more and more men with low volume (ie small) high grade tumors. This is better than in the past (pre-PSA era before widespread PSA testing) when virtually all men with high gleason scores also had large tumors. Now, with screening, we are catching many high grade cancers when they are small and before they have had a chance to spread. If your bone scan and CT scan are negative for spread, then you may have a pretty good prognosis with possibly a normal age-matched life expectancy.
 
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kbota replied to Judd W Moul, MD's response:
Thank you for your words of encouragement. As I type this, I'm sitting in a hotel staring at the four walls, worried about my future. It's a pretty lonely and frightening time for me.

The bone scan and ct scan were both negative. I also recently had an mri of the lower back which did not show any indications of tumor.

I do have a question related to my psa numbers. I have been so careful over the last ten years to get a yearly psa, and track those numbers. Mine has been running 1.6 to 1.8 up until 2009 when it came back at 2.26, and then this year it was 3.07. Do you think this cancer has been with me for a long time? How urgently do I need to have the surgery? Were I to wait for another month or so to have the surgery, would that make any difference? (aside from the panic I'm feeling)

I really do need to have the surgery done so I will at least know what I'm facing. Hopefully, my own resolve will kick in at that time. Right now, I'm a complete emotional wreck. (Don't let the typed word fool you - I feel like I'm in serious trouble here.)

No longer can I go to sleep on my own, and I hate that. xanax and ambien are the only way I can get sleep.

Sorry for whining.

k
 
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Galileo1962 replied to kbota's response:
K,

Man, my heart goes out to you. I know what prostate cancer anxiety is like. I highly, highly encourage you to reach out to the prostate community on HealingWell. Many, many guys there, and they're ready to lend an ear. There are guys with similiar stats to yours! You just missed the regular Wednesday night chat session there. It's a very active bunch--the most active and talkative I know of.

You might also want to find a support group near you. Check the US Too website for a listing of prostate cancer support sites, or call the American Cancer Society (if you're in the states). You might want to go to a general cancer support group like I did. It can really help. So can stress reduction or sleep CDs. Try getting in some light exercise.

Dr. Moul will probably have some more info for you, but my layperson's take is that you don't need to rush. A few weeks to settle down, let the anxiety dissipate a bit, and make an educated decision can only help you in the long run.

I'm not a religious person, but I do sometimes go to Mass with my wife. A nice benediction as the faithful get ready to leave is the prayer to "free us from all undue anxiety."

That's what I wish for you right now. Health and freedom from all undue anxiety. You're now a member--albeit an unwilling one--of a global brotherhood. Take some comfort in that and get some rest.

Peace.
 
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TomS1948 replied to kbota's response:
kbota:
Take a deep breath... All will be fine, I'd bet big money on that!! I went through all of this 5 years ago. It wasn't until my PSA reached 4.5 that I was sent to the Urologist for testing and they found it. I never had any of the scans (Doc didn't think they were necessary) and had the RRP done on me (non-robotic) and all has worked out fine. PSAs are now all less than zero. Try to view this as just one of those speed-bumps in life and this will all be behind you before you know it. I believe just about everyone that visits this discussion board can relate to what you are going through since we've all been there. Your outlook on life might change a little in that you might see that life is short no matter what and you need to enjoy it!! I always wanted a Jaguar, so I went out and found a nice used one (couldn't afford a new one!!) and my wife and I have been enjoying that thing for 4 years now!! Point being, get out of that hotel room and try to divert your thoughts and live life as you always have!!!
 
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kbota replied to TomS1948's response:
Thank you Tom. Your post gives me hope whereas I've had very little of late. When my urologist gave me the initial gleason score, I was shocked. After I started reading up on what a high gleason meant, I became scared beyond imagine. This is a nightmare I never expected to face at age 57.

Anyway, At this moment, I am approximately 12 to 14 hours pre-op. Today has been spent preparing for tomorrow's surgery. Even though I am still very apprehensive, I am more at peace today than I thought I would be. I started out today by stopping by the hospital to pre register, do a little blood work, and then do some shopping to pick up things I think I'll need for the next few weeks. Then I came home and mowed the grass, made a few honey-do home repairs, and then drank that bottle of juice that makes your bowels do weird things. Needless to say, I've been staying close to the bathroom for the last six hours.

I want to say thank you to everyone who took their time to make encouraging posts. They meant more to me than you know.

I'm not sure when I'll make another post, but I'll provide updated pathology as soon as possible.

Take care all, and God bless. By the way, I've spent the last month eating smarter and exercising, and I've lost 20 lbs. I'm down to 206 now, and striving for 200 or less. Then I'll set a new goal.



k
 
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TomS1948 replied to kbota's response:
By the time you read this you'll be recuperating. I was 3 weeks from my 57th B-day when I had my surgery and everything you have said here has been deja vu. The worst part (for me) was dealing with that catheter, but over time you even get use to that thing. So, sit back, relax, and immerse yourself into something you enjoy (and can do without straining). I love Hawaii and I watched every re-run of Hawaii 5-0 and Magnum PI I could... (Still love those shows....) As a matter of fact I went on vacation to Hawaii 10 weeks after my surgery!!!
 
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kbota replied to TomS1948's response:
Hello Tom and everyone; Well, I'm home as of yesterday. Surgery went fine, and we received great news as the cancer was apparently confined to the prostate itself. No lymph node involvement, and no involvement of the bladder neck. Great big "WHEW" ! I'm still waiting on path reports as to seminal vesicles, and confirmation of nodes and margins, but doc thinks things look pretty good. This catheter is driving me nuts, but it's tolerable. Still hard to sit up, but I can do it for short periods of time. So, I'm now waiting on confirmation from pathology which we should get tomorrow (Monday), and then the catheter comes out on Aug 5, and then that oh so critical psa at six weeks; around Sept 1.

When the doc took out the drainage tube yesterday morning, I asked him this question; You thought my results were going to be a lot worse didn't you? He thought a couple of seconds (about how to answer), and then shook his head up/down. "Yes I did" he said; We rarely see Gleason 9's that are not outside the capsule. You are blessed". I responded, "Yes, I am blessed, but I have also been forgiven" As a Christian man himself, he understood.


So; That's what I know guys. So for now, my job is to get healed up. I am so ready for a bm, just to get past that particular fear!

I better go lay back down.....belly's starting to hurt.

k
 
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kbota replied to kbota's response:
Hello everyone. Well, I now have my post surgery path. I do not have a hard copy yet, but the doc called earlier with the basic info. Gleason remained at 4 5=9, path stage is T2C, N0. My PCa was organ confined, with negative lymph nodes, negative margins, and negative seminal vesicles. Given where I was pre-surgery, then this is all excellent news.
Catheter comes out Aug 5, and then that first critical psa test.

This is all so unbelievable.
 
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TomS1948 replied to kbota's response:
That's great news!! Now that this "speed bump" is now showing up in your rear-view mirror and soon it won't be visible, life will return to normal (even the sex part of life, with only that "lack of fluid," minor difference...). Well, I'm out the door for a 2 week road trip to Northern Minnesota, Chicago, and Indiana to visit family. Take it easy and relax now. August 5th will be here before you know it!!
 
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Seekit replied to kbota's response:
Kbota, best of luck to you! I'm now 72 & a cancer radical prostatectomy survivor of almost 10 years. I was 62, 6'2", about 220 lbs., otherwise healthy, 2-year rising psa's at 3.5 & 5.8 as I recall. I had 15 cores during biopsy with the radiologist reporting poor differentiation, but with perineural invasion (which was considered within the capsule). My time from awareness ranged from late August, 2000, to surgery on 1/19/01, performed at Hopkins with a protege of the "father" of the nerve sparing surgery technique. The carcinoma was considered to be withing the capsule; my psa readings each year have been negligible, bladder retention is very good; nerve sparing worked, though medication is still needed. I hope my story, with its similarities gives you positive thoughts. I, too, drifted into remorse, but moved on against time, which I considered the enemy. The Lord will go with you!
 
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kbota replied to Seekit's response:
Thanks Seekit. It's always encouraging to hear success stories such as yours. I hope/pray that you continue to do very well.

The catheter was removed last Thursday, and I think I'm doing fairly well so far. Using 1 to 2 pads a day, and hopefully will be continent within a few weeks or months.

I go back on 9/3 for post surgical psa, and first shot of lupron which I'm not looking forward to, but seems to be the next proper course of treatment.

Thanks again, and God bless.
 
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rslemonjr responded:
kbota please look into Proton radiation therapy. It is available
in about 5-6 locations in the U.S.. They are San Diego, Jacksonville, Houston, Boston, Indianapolis and a couple of others as well. Just Google it and see what you come up with.
Everyone I have talked to regretted radical prostatectomy as well as brachytherapy (seed implants).

I just finished 8 weeks of proton radiation treatment and am very, very glad I did. You Dr. is not always right. At least go have an initial interview at your nearest center.

I am no physician and if your lymph nodes are effected, then you may require different treatment. But a consultation at a proton center does not cost anything.

rslemonjr


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