Need help again guys!

You think my stats mean it's localized - how so?

Localized? A CT and bone scan will give you a better idea but PERSONALLY your numbers suggest it is not localized which doesn't mean you have zero options but I sure wouldn't be wasting a lot of time procrastinating!!!!

They should be doing the scans this weeks as soon and the insurance company approve the procedure.

Your right , at this point I just want my life back so I can live again - I don't care about sex but to be able to pee would be nice...

I had a Foley once but hurt like hell so still doing the self-cath.

Is there a chance though, it could spread to the bladder?

Midi,
I can't tell you if it will spread to the bladder. Nobody can. I will be honest here, the TURP scares me.
I don't know who your Uro is (And i may be totally wrong) but I picture an old guy in his 70's who has been doing TURPs for years. Your Prostate is rotten all the way through. It just seems like it would be dangerous to be messing in there. Take it out or shrink it some way - radiation, chemically.
Don't worry about the sex thing. That's easy even with total ED. With a Trimix injection you can perform like a rock star. Check out how many guys here use it. The most important thing is to make the oncologist appointment.
Now get off this site and call the doc the guys suggested! This is your Mother talking! And turn down that stereo! Playing it so loud will hurt your ears. ;-)
Jeff

Edit: I just saw John T's note above. Listen to him.

Post Edited (Worried Guy) : 5/27/2010 3:02:23 AM (GMT-6)

Midi,
Having your uro consult with an Onc is a good first step. Be thinking about finding another Onc like the guys mentioned above. It is worth it. Now that is really GFMPH!

The scan will be no problem. Just close your eyes and relax. I actually fell asleep on the table!
Make sure to tell the tech why you are there. It should not matter, but I feel it helps somehow. Even if it only helps to educate them.

Good luck tomorrow!
Jeff

Please re-read JohnT's post a few up.  Your primairy treatment direction should now come from a medical oncologist with special expertise in prostate cancer.  "My urologist will talk with an oncologist when he returns from vacation" wouldn't be good enough for me, if I were in your position.  Your situation is not something to take casually.

 

Thanks - I'm not gonna die from this am I?

Sometimes I feel like I already am...:-(

Midi,
Your situation is not good. But like the saying goes: "It ain't over until its over."
Look at the PSAs and the history of some of the high PSA holders here.
living1963 (His was >3000), John T (look at his signature above) , sterd82(PSA was 39 at age 45- that was 4 years ago. He just posted a question, look it up. https://www.healingwell.com/community/default.aspx?f=35&m=1810083. )
There is also a site for people with PCa called yananow. It means "you are not alone now". Here is the link: http://www.yananow.net/ It has the data for guys with all levels of diagnoses and situations. You can sort them by PSA, or treatment or Stage. You will be surprised at how many are still around. It might help you see the bright side of a very dark cloud.
Please make a few calls to Onco Docs as listed above. Here's the script: " Hi, My name is Abc and I would like to make an emergency appointment to see Dr. Xyz. I am 55 and was just diagnosed with PCa. Here's the problem: My PSA was 37 and my CT scan indicated lymph node and bone involvement. I am scheduled for an MRI on Monday. I am also self catheterizing. It is the only way I can urinate. Please help me. I am in pain and need to do something. " If they can't get you in ask "Who would you recommend."

I understand you want to remain anonymous so open another email account with another name or use the email address you get here. It might be helpful to let people contact you. You might start another thread with your info summarized. "Help! PSA 37 Lymph and Bone involved. What's next?" Then tell your story. Do it after you have called the Oncologists.

I am not a fortune teller but I can read statistics. So can you.
Repeat after me. "It ain't over until it's over!"

My heart goes out to you.
Jeff

Post Edited (Worried Guy) : 5/28/2010 7:32:33 AM (GMT-6)

Midi....at this point there's absolutely zero reason to be talking about dieing!!!! Lots of guys posting in this forum have had similar numbers and are doing very well with their recoveries so get your other scan behind you so your COMPETENT urologist and ONCOLOGIST have a clear picture of what the right treatment will be and get on with your life as you have a long way to go! Do you feel you have the right doctors in your corner NOW????

74 years old - 106 gram little devil removed 2/10/10 Gleason 3+4=7. No pads for a while now. Getin er done!

Midi....I've posted on your thread MANY times and from the beginning did not feel your "doctors" were treating you properly and yes after being advised of my enlarged prostate by a flight surgeon many years ago and PSA's every three years with ever increasing numbers and two nine core biopsy's both negative (urologist did not believe / do NUMBING during biopsy's)....while continuing to monitor my PSA and the yearly fickle fingering once a year my GP figured my PSA then at 6.7, it was time to get checked out more thoroughly. Biopsy 12/23/09 - due to the holidays found mid January out the twelve core biopsys two of twelve were positive @ 30% and 70%....Ultrasound estimated prostate size at over 100 grams or three times normal. My wife had been following the various prostate cancer options over the years and while radiation seemed the most accepted the Henry Ford Vatikutti institute was being recognized as ONE of the leaders in robotic surgery. The size of my prostate, so we were advised made freezing, seeding, and radiation a tad more difficult (alas we will never know)....Further inquiries around and we discovered a Dr. Peabody who had been trained by Dr. Menon at Henry Ford. Scheduled my surgery for 03/08/10 but lucked out and got in on a cancellation 2/10/10. (at that time Henry Ford was advertising as having done over 6000 robotic procedures). I was the second operation of the day and due to my very large prostate my operation took four hours. Got to my room from recovery at 10:00 PM. Had a penile catheter, pubic catheter, and drainage catheter (behind the six punctures) the most bothersome was the penile catheter BUT it was only in THAT NIGHT. Blood drainage and penile catheters came out the following day before I went home. Wife helped out with the bags one day and then I took over myself with no big deal. Never had a plugged catheter and zero blood after three days. Pubic catheter came out ten days later due to a small leak at the bladder / urethra connection.
Post op report confirmed my Gleason was 3+4=7, prostate sized at 106 grams, nerves spared, nodes, vesicles and other associated components clear. At 74 years old / 6' tall and 196 lbs. I'm in decent shape. Wearing zero pads and life is good so HANG IN THERE as you have a long way to go!

Hi Guys,

I have just been diagnosed and have set up some time to see some specialists. Can anyone give me any feedback on any of the docs at the Mayo Clinic, Rochester?

Thanks! 

Midi,

I have been following your posts here on HW.

I am just going to underline what the guys are saying.

1. Get to a major cancer center, or reputed medical oncologist immediately. You have a serious case of PC. I would suggest places like Mayo Clinic, Johns Hopkins, Cleveland Clinic, etc. You need a team with a lot of experience.

2. Read as much as you can meanwhile. Educate yourself. The PC spreading to bones is not good, but it can be successfully treated for many years, but it will take real experts in the field.

3. Don't panic. As you will find here and on Yannow, there are men who have been battling this disease for years.

Sorry you have to be here, but you are in good company.

Midi:

Yes,you CAN die from PC. But you can also survive, even with the serious pathological report.

Please follow the advice here.

We can only tell you the same thing so many times.

Perhaps you can seek out some more names and see if your insurance has them. But you have to start making phone calls. This is URGENT!!

Mel