[2006] Hey Guys...anyone having prostate problems?/Merged

[AwayWeGo]

Newbie Here -- Total Rookie At Dealing With Prostate Trouble.

I've never heard of needing a blood transfusion for prostate surgery. Is what you are doing common?

I honestly have no idea. The doctor who'll be doing the operation recommended banking a couple of pints -- just in case.

It's got to be safer getting my own blood pumped back in (if needed) than going with whatever they find on the top shelf in the blood bank refrigerator. (Do you suppose they warm it up before they drain it back in?)

The odd thing is that back in the olden days I was a regular Red Cross blood donor -- made it into the Fifteen Gallon Club or Sixteen Gallons or some such before I got thrown out.

They blackballed me from making any more blood donations because of a false positive that turned up when they tested my blood for anything potentially dangerous.

Kind of hurt my feelings to get 86d from an essentially humanitarian activity that way.

I looked on it as a means of paying dues for membership in the Human Race.

So it goes.

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

 

[AwayWeGo]

2nd Medical Opinion = Same As The 1st.

The top doc at Johns Hopkins urology (where I went today specifically to get a 2nd medical opinion about my prostate cancer) basically recommended going ahead with the surgery I've got scheduled.

On the drive home from Baltimore, 2 vital questions came to mind that I wish I had asked the Hopkins expert before I left, to wit:

1. Does he know my local doctor who'll be doing my operation, & if so what does he think of my local doctor ?

2. What about getting a Prostate Transplant -- preferably from a very studly young adult organ donor who had the misfortune of being cut down in the prime of good health & virility by some unfortunate & tragic accidental trauma to some completely different part of the body ?

Wouldn't that be something ?

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

 

[rapmarks]

wouldn't that be nice.

I hope you won't need those pints of blood.

 

[Miss Marty]

PSA

Wonder what makes PSA Test Results
vary so much from lab test to lab test
Example: Low - High -Then Back Down

 

[wackymother]

2. What about getting a Prostate Transplant -- preferably from a very studly young adult organ donor who had the misfortune of being cut down in the prime of good health & virility by some unfortunate & tragic accidental trauma to some completely different part of the body ?

Okay, I hadn't been reading this thread (because I have absolutely nothing useful to contribute)...but THIS is a great idea!!!

Do you know the joke?

Q: "What do they call guys who ride motorcycles without a helmet?"




A: "Organ donors!"



Now it could be

Q: "What do they call studly, virile young guys who ride motorcycles without a helmet?"




A: "Prostate donors!"

 

[isisdave]

Wonder what makes PSA Test Results
vary so much from lab test to lab test
Example: Low - High -Then Back Down

Here is an interesting discussion of PSA variability, and accuracy of measurement, which apparently is not so great. Looks like a given reading in the range 5-10 might be only within 25% of the true one.

The author suggests that PSA may vary with time of day and 28-day cycle (!), and suggests that variation might be minimized by having samples taken at the same point in the 28-day cycle. Anyone know what the heck this is about? I've never heard about a 28-day PSA cycle ... nor how you'd know where you were in one.

 

[AwayWeGo]

Think Only Platonic Thoughts.

Wonder what makes PSA Test Results
vary so much from lab test to lab test
Example: Low - High -Then Back Down

My tissue-based PSA number (i.e., from the biopsy) was lower than my most recent blood-test PSA number. What correlation there normally is, if any, between tissue PSA & blood PSA is beyond my extremely limited understanding.

One factor they didn't mention ahead of time is that a man's PSA blood test numbers can go if up the guy has been, uh . . . er, ah, um, you know -- getting frisky the day or 2 before having a PSA test. To avoid raising the test numbers in a potentially misleading way, they need to tell the guy to think nothing but boring thoughts for a couple of days & not to get anything going in the romance department till after the blood sample is drawn.

Who'd a-thunk ?

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

 

[Jaybee]

We went to Philip's appt. witht the Oncologist in Palm Desert yesterday, and we were both favorably impressed with the dr. He's very cordial, upbeat, and he listens...not exactly what we've become used to,
He said Phil is a good candidate for the seed implant procedure, and he gave him a book to read, and showed us, on a computer, how the procedure is done, and gave us statistics on the the odds of various side effects.
Now, they just have to get authorization from our insurer, and he said he can do it, essentially an outpatient operation, next month, when we have our week at Desert Springs II. That will save us at least 150 driving miles.
He seemed surprised when he learned Phil had had a bladder scan, and he asked why that was done. Also, he knows of the doc who was going to do cryo-surgery, and was quite surprised that he was doing that. I feel even more certain that we dodged a bullet on that deal. Jean

 

[isisdave]

One factor they didn't mention ahead of time is that a man's PSA blood test numbers can go if up the guy has been, uh . . .

See the link in my previous message. Actually ANY activity that causes muscle flexing in the vicinity can cause PSA to rise. They mention bicycling and weight lifting, but I'll bet horseback riding and a wide variety of exercises, either with or without machines, would do it.

 

[AwayWeGo]

3rd Opinion.

I went to the National Cancer Institute of NIH in Bethesda MD yesterday for a 3rd opinion. After that, I decided to put off my surgery that was scheduled for next week & go with NIH instead. That doesn't mean starting over with diagnosis, etc., but it does mean a new treatment plan involving detailed MRI-style imaging & eventually robotic surgery.

The research aspect of all this focuses on the use of MRI-style imaging for prostate cancer -- not on the robotic surgery, which is already part of what they call the Standard Of Care for prostate cancer. That is, I am a guinea pig but only with regard to the MRI imaging part of it.

Unfortunately NIH does not offer the option of receiving a Prostate Transplant from a healthy & studly organ donor cut down in the prime of virility by some unfortunate accident involving motorcycles. (Neither does anybody else.) So it goes.

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

 

[rickandcindy23]

I thought seed therapy was the most common treatment for prostate cancer?

Good luck to you, Alan. I will say a prayer for you every day. My brother-in-law had seed therapy and is probably doing okay. We haven't heard from him in a while, but he always says he is doing great. I am doubtful.

If he stops the pot smoking and drug using, and whatever else he is doing, perhaps the treatment will have a chance to work. He's been a mess most of his life, and a lot of it isn't necessarily his fault, but he needs to take better care of himself. He is a musician and doesn't seem to care whether he lives or dies. He is so young, too, only 60. He grew a very long beard, and his hair is long, and he just doesn't look good to me. I see his pictures on the internet on occasion, when he is touring somewhere. Very sad. His hair is hiding something, in my opinion. Or, he is trying to hide behind his hair. I don't know.

 

[AwayWeGo]

Booze, Shmooz.

If he stops the pot smoking and drug using, and whatever else he is doing, perhaps the treatment will have a chance to work. He's been a mess most of his life, and a lot of it isn't necessarily his fault, but he needs to take better care of himself. He is a musician and doesn't seem to care whether he lives or dies.

Many of those messed up on booze & drugs cannot entertain the remotest possibility in their wildest imagination that there is any chance for happiness in living a life that's clean & sober. Then what a surprise it is when the few of them who do manage to get clean & sober (& stay that way) find out that life is not only better, it's immeasurably funner & happier & jollier that way than it ever was on booze & drugs.

All I can figure is that booze & drugs, in addition to the other damage they do, also cripple the imagination of the person still suffering.

Meanwhile, help is available -- but in an odd & curious way it's available only to those who want it. The key factor is willingness. For the unwilling there is no help.

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

 

[bogey21]

I thought seed therapy was the most common treatment for prostate cancer? (

I went through this about 10 years ago and I'm sure things have changed a lot since then. But back then many felt that seeds should be augmented with External Beam Radiation. Today, I suspect seeds would be augmented with IMRT which many feel is more precise than External Beam. Although I'm sure that seeds as a stand alone treatment worked for some I was leary of it. I actually went in a slightly different direction augmenting HDR Radiation with IMRT

George

 

[AwayWeGo]

I went through this about 10 years ago and I'm sure things have changed a lot since then.

For sure advances in detection & diagnosis & treatment of prostate diseases have accelerated greatly in recent years -- surgery & radiation both.

A pretty good rundown is given in Dr. Fuller's book -- & more advances have been made even since that book came out. Who'd a-thunk ?

Meanwhile, I have about decided that the prostate -- ounce for ounce -- causes more trouble in sickness & in health than any other human organ.

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

 

[rickandcindy23]

I hope Ronnie is following up with his treatment, especially if he needs additional radiation. He has been on a downhill slide for a good 2 years now. I found a music video that shows him with his long hair. It looks positively creepy. Ronnie has been bald in recent years, and now he is looking unhealthier than ever. He is hiding behind that Van Winkle beard, for sure. I think Sammy Hagar is probably still footing the bills for his treatment, but I may be wrong about that.

I keep expecting to hear that he died on the news, and have had recent dreams about that very thing. I think Rick needs to give him a call.

 

[bogey21]

I went to the National Cancer Institute of NIH in Bethesda MD yesterday for a 3rd opinion. After that, I decided to put off my surgery that was scheduled for next week & go with NIH instead.

Alan - You have done it the right way. Explore the alternatives and choose which protocol and the practitioner where you feel most comfortable.

George

 

[AwayWeGo]

Back To Square 1.

If I had not changed treatment plans & changed doctors & put off my surgery, I'd be lying there in the Recovery Room with my tongue hanging out right now instead of sitting here typing on the electric computer.

As it is, I'm currently not signed up for anything.

That's right, my National Cancer Institute schedule is a complete blank.

But they have not forgotten about me. If they can do my MRI on Oct. 31, then they can do my surgery on Nov. 10. If they can't do the MRI till Nov. 7, then the earliest date for the surgery will be Nov. 17.

There's no need for haste -- all the doctors say my recovery chances will be about the same if I wait 3 months or even 3 years. The need for speed comes from me. That is, I want it over with so I can get past the recovery period & get on with whatever comes next. (You know -- more timeshare vacations & all that.)

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

 

[rapmarks]

If I had not changed treatment plans & changed doctors & put off my surgery, I'd be lying there in the Recovery Room with my tongue hanging out right now instead of sitting here typing on the electric computer.

As it is, I'm currently not signed up for anything.

That's right, my National Cancer Institute schedule is a complete blank.

But they have not forgotten about me. If they can do my MRI on Oct. 31, then they can do my surgery on Nov. 10. If they can't do the MRI till Nov. 7, then the earliest date for the surgery will be Nov. 17.

There's no need for haste -- all the doctors say my recovery chances will be about the same if I wait 3 months or even 3 years. The need for speed comes from me. That is, I want it over with so I can get past the recovery period & get on with whatever comes next. (You know -- more timeshare vacations & all that.)

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

I know just what you are talking about, the need for speed. they make you wait and wait and it is the worst part of the whole ordeal.

Does anyone else find it ironic that the guy that started this thread never responded again. I know he is around because he was asking about Sun city on another thread about the same time this thread got resurrected.

 

[AwayWeGo]

National Cancer Institute Put Me On The Schedule. (That Was Quick.)

MRI October 24th -- earlier than I was expecting.

Surgery November 13th -- could be a week or so earlier if somebody else cancels.

Security over at NIH is like Fort Knox. The Chief Of Staff & I were given special NIH photo-ID cards, which should cut a little of the security red tape involved in getting into the place.

In any case, I should be out of the hospital & home in Depends well before Thanksgiving.

And by January 2009, I should be Good To Go for back-to-back Florida timeshare weeks.

Here's hoping.

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

 

[Jaybee]

Hi, Alan... I'm glad to hear that your treatment plans are falling into place. It sounds as if you've made wise choices.
I wish you a splendid outcome, and many more timeshare vacations, and that you will continue writing such entertaining and insightful notes for many years to come.
Jean

 

[Charlie D.]

Your MRI is on my birthday. I didn't know someone was going to celebrate it in that manner!! We appreciate you keeping us informed on the process.

Charlie D.

 

[AwayWeGo]

T. U. R. P.

An old friend I used to carpool with back when we both had to work for a living found himself in bad prostate trouble about the same time I found out I have prostate cancer. I have zero symptoms, however, & my friend was in such dire straits that he had to go to the emergency room with severe urinary blockage.

His urologist signed him up for Trans-Urethral Resection of the Prostate -- TURP -- which was done under spinal-block anesthesia last Wednesday (same day as my original surgery date that I canceled).

Just 3 days later -- Saturday -- my friend was up & around & out & about & feeling OK & looking good. He even showed up for the big Fairfax Band Westward Ho! concert that I got to paticipate in because I had put off my own prostate surgery.

Hats off to the urologists & urologic oncologists out there. Lots of us old guys would be in a world of hurt without those skilled & talented medical professionals working to keep our worn-out plumbing functioning a few years longer.

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​

 

[M. Henley]

Best of Luck ! !

Here's hoping for the best to you ! !

 

[Jaybee]

Our Saga Continues.....

We finally got a call Tues. morning saying the Oncologist had authorization to to a Volume Study on Philip. That's the procedure where a tiny camera is fed up his hoo-hah to show the size of the prostate, and help decide where to place the seed implants. The appt. was for 830 yesterday morning.
Since he couldn't have anything solid until after the procedure, he kvetched a lot about the whole process. (sigh)
We were up very early for the prep and the 1 1/2 hr. drive to the desert. He was called in at 8:15, and it seemed like I'd just gotten my coffee when they called me back. at 8:45.
The reason it went so quickly was because it seems that Philip's prostate is the largest the Dr. has ever seen, and there's no way the seeding would work. They don't do seeding on any that's more than 60 grams, and Phil's is 160! (See what can happen when you don't get regular checkups?) I told him it didn't give him bragging rights, but a guy's gotta have something to make him feel special.

So, it seems we're off to Plan C. He'll start taking Adovert, and periodic injections of another med for 6 mos. to shrink the prostate, and then hope our HMO will authorize TomoTherapy, a new form of IMRT. (TomoTherapy.com)

As an aside, and I think any women who might read this would find it more humorous, Philip was seriously telling me how uncomfortable it was to have to lie on that table, on his back, with his feet in those stirrups. I just looked at him, and said, "Really?"

And so, the beat goes on. I hope all this might be of some interest, or help to someone. I, for one, can't wait for the end of this story. I wish you all well.... Jean

 

[rickandcindy23]

I wish you all well too! I hope every one of you that is dealing with this terrible diagnosis gets through it.

Makes me wonder how Dan Fogelberg died of this cancer. Did he not get treatment? Did he dismiss the diagnosis and choose to just live as long as he could without it? I don't know many people for whom this is terminal. Could be for Ronnie.