Page 3 of 6

Re: A Club Membership offer I cannot refuse.

Posted: Sat Jun 28, 2008 3:20 am
by John Sheraton (imported)
Joe, you are making the right moves to safty and good medicine. It's doubtful your Gleason score will change since it, at 6, shows you are not being attacked by prostate cancer. If it were 7, you'd have some serious thinking. . . .

Lastly, with where you're going, this is not necessary to say, but, remember, the Urology Department at the clinic should and I'll bet they do, corrdinate with their Radiology Department. It is possible in ten to fifteen years you might have to have something done. Urology specializes in radical or surgical removals. The Radiology Department does the Seeds, the implants as an outpatient, far less evasive procedure than any operation. Hopefully, by the time you'll have to have something done, they will havef invented a pill to eliminate the cancer avoiding any "hands on" to your prostate which usually winds up with things "not being exactly the same as before".

If anything, your files are being cleanzed of any stubid recommendation your current Doctor made to avoid the embarrassment of having a real Doctor see what he had been up to. It would be neat if you would update us after your first visit to the new Doctor. I've got my fingers crossed: you'll be a very happy camper.

Re: A Club Membership offer I cannot refuse.

Posted: Sun Jun 29, 2008 10:18 pm
by curious1 (imported)
I am sorry to hear of your situation, and really do wish you the best.

Re: A Club Membership offer I cannot refuse.

Posted: Mon Jul 07, 2008 8:33 pm
by Joe_Trotter (imported)
Tomorrow morning, my wife and I will visit my new Urologist.

I am surprised at how calm I am about the whole thing. My wife is the one with the heebie-jeebies. That is why I invited her along.

I will let you know what he suggests.

I am, if anything, too eager to hear how his recommendation differs from the other one's

Re: A Club Membership offer I cannot refuse.

Posted: Tue Jul 08, 2008 1:44 am
by eunuch2001 (imported)
Hi Joe

I only just read your initial posting and all the responses. I sympathise with your situation and I truly admire your positive attitude. I can tell you from my own experience with testosterone replacement that it really works well. I'm currently on an injection of Nebido every 12 weeks - 1000mg/4ml solution for injection, Testosterone undecanoate it says on the box - I haven't grown breasts, I don't suffer with depression any more than I did before my orchiectomy, and my sex life is as good as it was before.* When I climax the quantity and appearance is the same as before the op. If you do end up having an orchiectomy bear in mind it is possible to have replacement testes (I think they're made of silicon) so nobody in a shower room would be any the wiser. I didn't have them because I'm happy being ball-less.

Hope that helps.

*Was it Joan Rivers that said she has a perfect sex life, all she needs is a partner?

Re: A Club Membership offer I cannot refuse.

Posted: Wed Jul 09, 2008 9:11 pm
by Joe_Trotter (imported)
My wife and I met with the new Urologist on Monday morning.

I like this guy much more. I was getting no weird vibes about him not telling me the whole story.

As Urology surgeons go, I am convinced he is the best in the area, and the best that I am going to find covered by my insurance. He has performed hundreds of surgeries of this kind, teaches this kind of surgery at the Wash. U. Medical school, and performs laparoscopic surgery, something my first Urologist forgot to mention as an alternative. He also performs robotic surgery and is using the new DaVinci method. He is incredibly bright. I can be too subtle at times. I don't realize until afterwards that my audience has missed the point. He is one of the few people I have ever met that picked up on all of my subtleties.

My wife was too embarrassed to ask the questions she wanted answered. Had I known beforehand, I would have asked her questions myself.

His only comment about the current sex problems was that radical prostatectomy never makes it better.

He was willing to entertain my sometimes unorthodox suggestions, and provide his professional opinion. I proposed a Testosterone blockade, basically orchiectomy and hormone blockers, for perhaps six months, to reduce the size of the prostate, then perform the surgery. The smaller the prostate, the smaller the chances of undesirable consequences. I liked his answer - he would do it if that was what I wanted, but did not recommend it. True, the blockade would cause apoptosis (a - pop - toe - sis) and the prostate would shrink. However, the apoptosis would cause local inflammation and make the surgery more difficult.

He went into more detail about possible consequences, including incontinence and inability to perform sex.

With the laparoscopic surgery, I would have to stay overnight, but could go home the next day. Because I work from home, there would be no reason for me not to be back at work the next day.

When I left his office, I was convinced I wanted to schedule the surgery and get on with it.

Now, I am not so sure, for no particular reason.

I have a large financial concern. My current job is contracted. I get paid by the hour, with no benefits - no vacation, no insurance, no nothing except SSI coverage for the taxes. I have every expectation that my job will end December 31, 2008.

My wife lost her job the first of November, last year. We have had COBRA coverage since then. It runs out in April, next year.

To be blunt, if I have to purchase medical insurance for myself, my existing condition will not be covered. Even if my wife finds another job, it will not necessarily come with an option for family insurance coverage that will cover my pre-existing condition.

At the same time, I become more convinced all the time that low-risk cancer is so distinct from high-risk cancer that they should be considered different diseases.

I have a feeling he knows my former Urologist. Fiddling with statistics and numbers I found on the internet, I estimate that there are right at 20,000 new cases of Prostate Cancer diagnosed in the St. Louis Metro area every year. Some older statistics show that 30% of the patients elect surgery. If my numbers are correct, that comes to 6,000 surgeries in the St. Louis area. If each surgeon performs about 80 per year, then there would be 50 to 100 local Urologists performing surgeries. Just from professional association, the chance that he has met and talked to my former Urologist are very high.

He is also frequently consulted for second-opinions in diagnosis.

He wanted the original slides so that his pathologist could verify the diagnosis. Sometimes, he says, his pathologist reaches a different conclusion. Apparently my first Urologist did not feel it necessary to make accurate copies of the biopsy images to send along with my file, in spite of my explicit directive to do so on the HIPAA release form.

I am suspicious by nature, and none of this is helping my concerns about the first Urologist.

I can afford to wait until I get the results from his pathologist before I make my final decision.

Re: A Club Membership offer I cannot refuse.

Posted: Thu Jul 10, 2008 2:00 am
by John Sheraton (imported)
Joe, what is missing here, it seems, is discussion of your stats: Gleason score 6 and PSA 3.4. Are these correct? If so, though every case is different, I can't understand why surgery or anything other than "watchful waiting" or stop in next year wouldn't be a fair disposition of your case. What am I missing.

Re: A Club Membership offer I cannot refuse.

Posted: Thu Jul 10, 2008 11:02 am
by A-1 (imported)
More information....

http://www.prostate.com/homepage/

http://www.thecancer.info/sale/prostate ... cancer.htm

This is the best site^^^^^

http://www.tirgan.com/kidney.htm

There are lots of good sources on the net. Use a search engine and key words "prostate cancer"

Re: A Club Membership offer I cannot refuse.

Posted: Thu Jul 10, 2008 8:18 pm
by Joe_Trotter (imported)
What am I missing?

John, I thank you for your concern. I appreciate it and it helps a lot, I assure you. You have had a greater effect than you know. I am very seriously considering the options you advocate, where before, I did not consider them at all.

I have, however, decided not to further investigate radiation, either external or internal (Brachytherapy). As far as I can tell, they are using radiation poisoning to kill everything in the vicinity of the prostate. There is nothing magical about it. They might as well use targeted microwaves of the correct wavelength, and just cook it. Same effect. What is left is scar tissue.

I am caught in a dilemma. I am no longer a typical guy walking down the street. I am a typical guy walking down the street with prostate cancer. This is not theoretical. Prostate cancer is the second leading cause of cancer death in American males.

If things go great, then this is all a waste of time and money, and I should just schedule regular exams to keep an eye on things, just in case.

If things go badly, then they go very badly.

I no longer have a Gleason score. I have abandoned the diagnosis from the first doctor, and the new one has yet to review the evidence and come to a conclusion. So I am theoretically not even ready to make a decision.

I am not certain that my Gleason score is 6, and yet, I am. Before I saw the results from the first biopsy, I had been looking at pathology slides on several sites, of prostate cancers. My own biopsy slide matched what I had seen presented as that level of problem. It was a medium growth tumor. Not low, not high, but in between, and more toward the high side. There is a lump on my prostate. I could not believe how quickly my new Urologist was able to palpate it. Five seconds, max.

From the biopsies, I know I have a T2 stage tumor, however, the cancer cells constituted 75% of the one sample, a bad sign.

Lately, voiding was becoming progressively more difficult. Flomax has helped my situation, but I knew I was going to have to deal with it soon in any event. It was only a curiosity two years ago.

John, what you have consistently overlooked is the free PSA measure. Yes, the PSA is normal. However, the free PSA is extremely low. I noticed that when the nurses told me about the numbers, they seemed to choke at the free PSA level.

Free PSA counts in the evaluation and decision making.

http://www.medscape.com/viewarticle/453004

In the below link, check the Distribution of Free/Total PSA

http://www.baylorcme.org/prostate/prese ... n_text.cfm

My free PSA is 5% or less. According to that graph, my free PSA is down in the area that almost precludes a benign tumor, and almost guarantees prostate cancer.

There are also indications that the lower the free PSA, the more likely it is that the cancer is aggressive: info from Baltimore Longitudinal Study of Aging

http://www.emedicine.com/med/topic3465.htm

Biggest flaw of that study was the minimal number of samples.

On one hand, I do not want to suffer the inconvenience and indignities of the surgery. On the other, I have a wonderful wife, a fabulous daughter, and a great deal of living left to do.

Whichever way I go, I must live with the consequences.

What you may be missing is that if I don't do the surgery this year, then I probably don't need to bother with the "watchful" part of waiting.

Next year, even if it is caught early, I will not be able to afford treatment.

That is enough to make one sit back. It focuses the mind.

One thing I found funny about my new Urologist, is that he is surprisingly naive about hormones. When I suggested that my Testosterone level might have dropped precipitously, he was sure that it had not. He knew, he said, because I still sport a beard. And, he hinted darkly, "other changes". I did not want to go into it, but we know what he was talking about: gynomastia. Since I was not wearing a bra, I still had to have normal levels of Testosterone.

I am not a physician, but I knew that was incorrect twenty-five years ago, long before I started my current research.

Re: A Club Membership offer I cannot refuse.

Posted: Fri Jul 11, 2008 4:01 am
by John Sheraton (imported)
Joe, thanks for your comprehensive and thoughtful response. You've done everything including going to www.nccn.org , to find a clinic networking from your area, changing to the clinci Doctor, and evaluating your PSA and Gleason scores.

If your original Doctor did not send your new Doctor the results of your Gleason score, that is reprehendable and shameful. Your new Doctor should make a professional effort to get it to spare you unnecessary awkwardness in doing is again so soon after having done it.

Your introduction of Free PSA scoring is new to me and adds to your decision making.

I chose the Seeds because they were the least invasive procedure. Nonetheless. there are always reprocusions. I think the policy is: don't let anybody do anything to your prostate until is has to be done.

In the back of my head, I keep thinking your new Doctor has not specified a (another, ouch) Gleason biopsy because he doesn't think you need one.

Soooo, Joe, good luck. Be patient with yourself. You're in good hands. Take care, with Regards, John

Re: A Club Membership offer I cannot refuse.

Posted: Fri Jul 11, 2008 11:20 am
by John Sheraton (imported)
P.S. Joe T
John Sheraton (imported) wrote: Thu Jun 26, 2008 10:54 am he National Comprehensive Cancer Network
says with a 10 year or more life expectency Low Risk T1-T2a, Gleason 2-6, PSA below 10. The first diagnosis is: Observation -- no medical treatment.

That could be you.

Plus, the NCCN says: A Biopsy is the only way prostate cancer can be diagnosed.

Your Doctor has got to get those Gleason results back for you.

Plenty of other questions though I know one thing: You have gotten yourself in one of the best 21 Clinics in the USA studying prostate cancer and you have one of the best Physicians in the business handling your case. What was the next step. What did he recommend. My heart is with you.