Medical Forum / Diseases and Disorders / Prostate Cancer / September 2005
Newly diagnosed and wondering
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TW - 21 Sep 2005 04:01 GMT I'm a very fit and active 57. A lump was found during DRE. It was confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, Gleason 3+3. The recommendation of my PCP, urologist and a lot of what I've read online is surgery. I was going to go that route until I started reading the support groups. Frankly, I've found the problems after surgery and beyond more than I was lead to believe. Is it worth it? I remarried two years ago to a complete Angel (she's an RN) and a long, healthy and intimate love life is important to us. My occupation is physically demanding and bladder issues are a concern. I wonder if high dose temporary seeding is a viable alternative. I'd like to get the sucker out of there for good but am a little gun shy. Any thoughts would be GREATLY appreciated. TW
Debbie Trujillo - 21 Sep 2005 04:40 GMT You didn't indicate how many cores were infected. Whether seeding is an alternative depends on how spread out your cancer is and should be discussed with you uro.
Surgery will not necessarily end your love life and you should also discuss this with your uro. Sometimes they can spare the nerves. There are also options to help out here such as the pump, Viagra, injections, and/or implants.
This is just my opinion based on our experience.
-- Debbie Trujillo, wife of PCA survivor
On 9/20/05 8:01 PM, in article 1127270999.103506.269220@g49g2000cwa.googlegroups.com, "TW" <twitte@bellsouth.net> wrote:
> I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 9 lines] > would be GREATLY appreciated. > TW
 Signature Debbie Trujillo
Please visit my website at http://mysite.verizon.net/res21yh8/index.html
TW - 21 Sep 2005 05:00 GMT Debbie,
The path report says " Small focus of adenocarcinoma of prostate, Gleason's combined score 6 (3+3) involving 5% of tissue biopsy. " 6 samples were taken. Last year a DRE showed nothing. I'm not sure this answers your question but thank you so much for responding.
Tom
Steve Jordan - 21 Sep 2005 16:56 GMT > The path report says " Small focus of adenocarcinoma of prostate, > Gleason's combined score 6 (3+3) involving 5% of tissue biopsy. " 6 > samples were taken. Last year a DRE showed nothing. I'm not sure this > answers your question but thank you so much for responding. Omigod, six specimens, a sextant biopsy! I thought that those went out of style years ago.
I do not believe that any PCa medic who knows his business would *ever* do a sextant biopsy these days. It has a huge potential to miss tumors, and is IMO very nearly malpractice.
Regards,
Steve J
Pops - 21 Sep 2005 17:35 GMT My biopsy was a sextant! I asked my Uro why. His answer was that the biopsy is itself invasive and it's impact should be limited as much as practicable. If your results come back as gleason 3+4 and t2b with a PSA of 16, as mine did, then why subject yourself to six additonal holes in your large intestine and prostate. If the results are negative or questionable then a further biopsy, with more cores, can be done.
Tom had a positive DRE and a positive PCa diagnosis. At 57 that is not a watchful waiting sceneario even with the low PSA. It's RP or seeds, and with the statistics I've seen, curative result statistics using either treatment are the same as are the SE's. His job is to carefully research those alternatives, avalable resources, and to make a call. It is hard for many. It was easy for me. The best bet to KNOW the status of your cancer is surgery and a detailed pathology of the gland involved. With seeding or EBRT you simply don't know and Tom's PSA may indicate that PSA testing is not a good indicator for him.
I wish him the best. His numbers are great (for having that dastardly PCa), and his chance for a cure is equally high.
Too bad you had to join us, Tom, but this is a great and knowledgeable bunch and we will all do everything we can to help you with your journey. You are not alone. God speed...
Steve Jordan - 21 Sep 2005 18:57 GMT On September 21, possibly responding to me (he didn't say), Pops wrote in pertinent part:
> My biopsy was a sextant! I asked my Uro why. His answer was that the > biopsy is itself invasive and it's impact should be limited as much as > practicable. If your results come back as gleason 3+4 and t2b with a > PSA of 16, as mine did, then why subject yourself to six additonal > holes in your large intestine and prostate. If the results are negative > or questionable then a further biopsy, with more cores, can be done. Do it right the first time and it shouldn't be necessary to do it again.
Twelve specimens were taken from my prostate. One side showed five of six with Gleason *9* tumor cells. *A Gleason 8 tumor on the other side was missed, even though six specimens were taken.*
I think that I can state with absolute assurance that Pops's uro was out of date and foolishly wrong. He gambled with Pops's life.
Regards,
Steve J
"'MD' does not mean 'Medical Deity.'" -- Stephen B. Strum, MD
Steve Kramer - 23 Sep 2005 23:07 GMT One of the bigger decisions to be made is treatment. I think that more needles produce more cancer and that produces a better picture of whether you're a Gleason 5 or Gleason 7.
Just 2 cents worth
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum
> My biopsy was a sextant! I asked my Uro why. His answer was that the > biopsy is itself invasive and it's impact should be limited as much as [quoted text clipped - 19 lines] > bunch and we will all do everything we can to help you with your > journey. You are not alone. God speed... ross lazarus - 21 Sep 2005 05:25 GMT Welcome. This is a good place to ask. You'll find lots of good information and resources by reading back through the posts and there are plenty of helpful and knowledgable people who hang out here.
Sounds like you're going to have three main options to select from - wait, seeds or RP.
The one thing everyone here will likely tell you is to do your due diligence - here and elsewhere. Choose carefully - it's an important decision and there will be consequences no matter which way you go. You can probably afford to take some time - PCa with a gleason 3+3 does not tend to metastasise early - it tends to slowly spread through the gland and eventually through the tough capsule - but that probably takes years.
My 2c worth: I'm a fit 54, gleason 3+3 in 20% of 1 core (of 5) from the left lobe, PSAs were 5.6 later 4.8. I chose the knife.
I had a laparoscopic RP 7 weeks ago today (Doug Dahl at MGH in Boston). I had the positive biopsy result in late April, so I researched, waited and worried for about 3 months before surgery - probably fairly typical. I still have minor belly discomfort occasionally and some mild urinary urgency, but I've been back at my desk job for nearly 3 weeks, I'm continent and have had servicable erectile function without vitamin v since week 4. From what I learned here and elsewhere before surgery, I'm one extremely lucky boy - my experience is definitely not typical for 7 weeks post surgery. Many others here have had less ideal results, but at least a very good result is a possibility!
I chose surgery over waiting because I'm young and my father in law died of PCa - it was not a process anyone in their right mind is likely to volunteer for.
I chose surgery over seeds because in my personal view, there was something attractive about the definitiveness of surgery compared to the relative uncertainty of outcome from seeding - there are risks to continence and erectile function with seeding - they're less if the dose is lower, but residual prostate may mean recurrent cancer so it's a narrow window of dose to get right.
If you go the surgical route, I'd recommend you seek and find a surgeon who does a lot of RP's and has provably good outcomes. If he/she won't talk about their specific figures (eg % patients not using pads at 3/6 months and % with usable erections at 12 months), move on. Technically, it's a very demanding surgical procedure, best done by a talented operator who does a lot of them with good outcomes.
Open surgery is probably the most widely used technique and there are very good people out there. I chose laparoscopic surgery because there's less bleeding, and much quicker post op recovery, and the outcomes seem similar. However, it requires a very talented surgeon with a lot of experience and a great support team for best results. The surgeon I chose has done 3 LRP's every tuesday for 3 years in Boston and had done about 100 before coming here with pathological results (eg negative margin rates) the same as the open operators at MGH urology. Robotic assistance makes it easier for the surgeon but is available at only a few centers. My surgeon said he preferred to feel what he was doing which the robot takes away..
So, there's one story. As has been pointed out before, no one volunteers to join this particular club, but since you're here, once again welcome and good luck.
There are
> I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 9 lines] > would be GREATLY appreciated. > TW James A. Honeychuck - 21 Sep 2005 08:43 GMT TW,
You're definitely asking the right question.
I checked the archives of this group, and in March Clarence Crow posted a good comparison of the various alternatives: http://www.prostateoncology.com/resources/?pg=patient_education
Download: Surgery vs. Seeds vs. IMRT
Unfortunately, the outcomes are about the same for seeds vs. surgery.
So I guess the only thing to do is get the specific success rates of the medical team you are thinking of using.
jimhoney standard RRP age 52, cured, no significant aftereffects
> I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 9 lines] > would be GREATLY appreciated. > TW Steve Kramer - 21 Sep 2005 10:40 GMT Sorry to welcome you to the club, but you were dealt a hand of cards and there isn't a whole lot you can discard and win this hand.
You have great numbers compared to the rest of us. Very few are diagnosed with such a low PSA, Stage and Gleason. So a cure is a reasonable hope.
Incontinence is not something that usually sticks around for most surgery patients. And they are doing good things for impotence.
Kill the cancer and live longer to love your angel and work.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum
> I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 9 lines] > would be GREATLY appreciated. > TW Ron B - 21 Sep 2005 14:15 GMT Hi Tom, sorry to welcome you.
Great info from the guys and gals here.
Your numbers are indeed better than many.
I had the open RRP last March and am doing OK.
I'm 57 and my PSA was 7.2, Gleason 3+4=7 which was shown to be 3+3=6 after surgery.
Much of your decision depends upon what you can handle emotionally.
I couldn't just wait. My PSA was too high and I'd worry too much.
I needed the cancer out.
Best wishes whatever your decision based on your extensive research.
And as Steve K. said so well:
"Kill the cancer and live longer to love your angel and work."
Ron B.
Chicago
Buttercup's Dad - 21 Sep 2005 12:24 GMT I will just echo what the others have said. Number one is to do your research and be as informed of the alternatives as possible. You have to make this decision, and you have to live with the consequences. You want to be in the strongest position possible to make an informed decision. If you are lucky enough to have a partner that cares, be sure to involve that person in your decision making process. Remember that their life will be affected by the outcome of this too.
Second, seek out the most experienced doctor you can, and if you go the radiation route you want the most advanced technology available. The level of precision available today for radiation did not exist ten years ago. For RRP or LRP, know that there are still surgeons out there who are not trained in the nerve sparing surgery. So if that is important to you, and it sounds like it is, then you want someone who does the nerve sparing surgery, does lots of them, and is willing to talk about his track record. Be wary of a doctor that will not talk about his/her record.
From what I understand, you are at risk for side effects (SE's), incontinence and impotence, with any alternative you chose except watchful waiting (and I certainly do not recommend that). Most men are continent within three months, so I would not let that be a major factor in your decision. I was one of the unlucky ones, still incontinent after two years, and just had the artificial sphincter implant surgery two weeks ago. I can kiss the pads goodbye soon. I have a neighbor that uses a clamp and swears by it. Again, there are alternatives to deal with incontinence.
For impotence there are a lot of alternatives, but again, many men recover natural function although that can take months or even years. In my case I had ED problems going in, so the doc's tell me that I will probably never regain natural function. I am 58 by the way. I was a T1c, PSA 5.0, PSA Free 6%, and Gleason 5. I had RRP in 2003. I am not athletic or in great physical condition, but I was up walking unassisted, albeit slowly and not far, less than 24 hours after leaving the OR, and went home the morning of the second day after surgery. The point being, don't be afraid of the surgery, especially if you get a laparoscopic procedure.
Good luck to you.
David S.
> I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 9 lines] > would be GREATLY appreciated. > TW Bill - 21 Sep 2005 15:06 GMT This is not so much a reply to TW but a general comment/question/poll.
Is it not the case that regaining "normal" erectile function is very rare? We know what the doctors mean - an erection capable of penetration - but I do not consider that normal. Can anyone say that they are the same size and get the same erection w/o manual stimulation, enhancements, etc. post RP?
Bill Denton RP 2/12/02 PSA .6 Memphis
ross lazarus - 22 Sep 2005 04:05 GMT a physician's view: Erectile function is unlikely to ever be improved by RP. The prostate is an important component in the very complex system which allows an erection to occur and to subside appropriately. Erection is blood under pressure filling very specialized tissue - the corpora cavernosa in the penis and lower pelvis. Cutting (pun intended) the prostate out of the equation, even with sparing of the lateral neurovascular bundles, inevitably disrupts a whole raftload of other tiny nerves and blood vessels which are directly involved in regulating vascular tone, allowing blood to flow in and stopping blood flow out of the corpora to make it swell. So it's more or less inevitable that some decrease in erectile quality will occur. Some of it may improve with time, but remember, for most men, erectile function declines with increasing age whether the prostate is there or not! Having RP probably always accelerate that process - it sure isn't likely to slow it down!
a patient's view: No, it's not the same. It works well enough - my wife is a reasonable and understanding human being, so we're still able to have a great time. It's not as hard or big as it was. Too bad. There are mechanical devices and drugs available if need be but I haven't yet felt the need. The cancer is gone and I'm grateful to have any sex life at all after RPP, let alone one which is satisfying. I'm 54 and having PCa helped me realise that my former fully erect member was not the most important thing in my life! But that's a very personal valuation which each of us has to figure out.
> This is not so much a reply to TW but a general comment/question/poll. > [quoted text clipped - 3 lines] > they are the same size and get the same erection w/o manual > stimulation, enhancements, etc. post RP? Buttercup's Dad - 22 Sep 2005 12:37 GMT Just a comment on the very well written description below of the complexity of the erection process. I wonder why they do not explain that before the surgery? My uro just told me that I would not have anything coming out of the surgery that I did not have going in. That was it.
> a physician's view: > Erectile function is unlikely to ever be improved by RP. The prostate is an important component in [quoted text clipped - 23 lines] > > they are the same size and get the same erection w/o manual > > stimulation, enhancements, etc. post RP? I. P. Freely - 22 Sep 2005 17:10 GMT That is a criminal statement. If you can prove that, you can be a rich man . . . unless you came out as good as you went in.
I.P.
> My uro just told me that I would not have anything coming out of > the surgery that I did not have going in. That was it. Buttercup's Dad - 22 Sep 2005 18:43 GMT There is no way that this is the same as before, in a lot of ways.
> That is a criminal statement. If you can prove that, you can be a rich man . > . . unless you came out as good as you went in. [quoted text clipped - 3 lines] > > My uro just told me that I would not have anything coming out of > > the surgery that I did not have going in. That was it. I. P. Freely - 22 Sep 2005 19:29 GMT Oops . . . wait a minute. It appears both you and I misunderstood your uro. He meant surgery would not IMPROVE your performance. It won't make you a world-class pianist, and it won't give you a world-class penis. He didn't mean that it wouldn't leave you a dribbling, shapeless, non-responsive mass of Jello.
I.P.
> There is no way that this is the same as before, in a lot of ways. > [quoted text clipped - 6 lines] >> > My uro just told me that I would not have anything coming out of >> > the surgery that I did not have going in. That was it. Buttercup's Dad - 22 Sep 2005 12:41 GMT In my case there are more changes than just impotence. The feeling down there is gone. Even with the help of the injections, intercourse is not the same. The sensitivity, or pleasurable feeling, is just not there. It also takes over an hour of stimulation to achieve orgasm. No, nothing is the same after the surgery.
> This is not so much a reply to TW but a general comment/question/poll. > [quoted text clipped - 8 lines] > PSA .6 > Memphis Leonard Evens - 22 Sep 2005 19:54 GMT > This is not so much a reply to TW but a general comment/question/poll. > [quoted text clipped - 3 lines] > they are the same size and get the same erection w/o manual > stimulation, enhancements, etc. post RP? Or for that matter after radiation, external or with seeds.
The answer is is that with any method there is a wide variation, depending on many factors, with age being the most important. There are certainly men who notice no difference as there are who experience complete impotence.
But I think you are asking the wrong questions. For example, ego and folklore aside, size is pretty irrelevant. The real issue is whether after treatment, the man and his partner can function in a manner satisfactory to both. The answer to that is that it does happen in a very large number of cases for men in their later fifties in the hands of a skilled physician.
> Bill Denton > RP 2/12/02 > PSA .6 > Memphis Bill - 23 Sep 2005 16:14 GMT Leonard, the reason I inserted that question/comment into this thread is that someone had suggested to TW that he could regain "natural function." [I mistakenly used "normal" when I should have "natural."] Although you say that "There are certainly men who notice no difference," no one has come forward here to make that claim and I am not aware in the 3.5 years I have been in this NG anyone claiming it. Thus, I believe that such a statement is simply not supported by fact and is misleading to a newbie, especially one who said on the front end that an intimate love life [translation: sex] was important to him. The fact is that it will never be the same again no matter how succesful we are at adapting to the situation and/or modifying our definition of "normal." And all men (and wives) simply need to know that going in.
Leonard Evens - 23 Sep 2005 19:01 GMT > Leonard, the reason I inserted that question/comment into this thread > is that someone had suggested to TW that he could regain "natural [quoted text clipped - 8 lines] > are at adapting to the situation and/or modifying our definition of > "normal." And all men (and wives) simply need to know that going in. Actually, I think one or two men have made just such a claim in this forum. Also, it is important to remember that those who post here are not a representative group. Men who have had virtually no problems are less likely to post.
I do think what I've said is accurate, but let me repeat it again. After RP, almost all men will experience some degree of impotence. Many younger men will regain erections after a period time. This depends on a variety of factors, one of which is the skill of the physician involved. Older men are more likely to be impotent, but they can usually continue to be active sexually with aids ranging from injections to implants. I think such a description gives men some idea of what may be in store for them. It hardly suggests that they are likely to be the same as before surgery, although in some cases that does happen. But it does emphasize that many couples manage to continue a satisfactory sex life, by one means or another, after RP.
dale.j. - 30 Sep 2005 01:04 GMT > > Leonard, the reason I inserted that question/comment into this thread > > is that someone had suggested to TW that he could regain "natural [quoted text clipped - 25 lines] > does happen. But it does emphasize that many couples manage to continue > a satisfactory sex life, by one means or another, after RP. I'm coming up on the three year mark (Dec 2) and no problems, that way or this way, LOL. I'm almost 63 (Dec 2) and still running too.
Dale J.
 Signature Email: dalej2@mac.com
MrP - 23 Sep 2005 22:03 GMT >> This is not so much a reply to TW but a general comment/question/poll. >> [quoted text clipped - 22 lines] >> PSA .6 >> Memphis Treatment possibilities have a lot to do with the specific type of cancer involved. For example, transitional cell carcinoma (as mine is) is generally not as responsive to radiation methods, and requires surgical removal. Mine started as TCC of the bladder, and that was treatable by BCG infusuions. Unfortunately it spread from the surface of the bladder interior out through the urethra and affected the prostate. I actually had bladder cancer of the prostate, according to the biopsy analysis. At that point it was decided that they both had to come out, even though the bladder was technically "cured." My doctor said "forget about sex," but (sigh..) memories remain.
MGB - 24 Sep 2005 23:36 GMT There are many more options in dealing with impotence than there are with a cancer that gets loose from the prostate gland and into the rest of the body. Stay focused on finding the best approach to ridding yourself of the cancer.
MGB
Steve Kramer - 23 Sep 2005 22:38 GMT I think you are correct. There are many men who return to an active, self-initiated sex life. But, I cannot remember anyone saying they were has long, as hard and as virile without medication and rarely with medication.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum
> This is not so much a reply to TW but a general comment/question/poll. > [quoted text clipped - 8 lines] > PSA .6 > Memphis I. P. Freely - 21 Sep 2005 16:27 GMT Realize that very fit and active guys cruise through surgery -- even open RRP -- easily. I'm older than you and likely a bit less fit, and could have returned to desk work resonably comfortably in < a couple of weeks, physical labor within a month. Lap RRP lays one up MUCH less.
I.P.
42n8-1 - 21 Sep 2005 16:11 GMT hey tw , i am 1 week out of rrp and it was a little rough and discomfortable ,but for me at 50 years old psa 6.7 gleason 7 (3+4) t1c it was the choice i made. the oncologist that i saw also recomended surgury . like the good people here said ,even if you are incontnent or impotent there are alternatives to making things work . good luck in what you choose. Harry
> I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 9 lines] > would be GREATLY appreciated. > TW Steve Jordan - 21 Sep 2005 16:33 GMT > I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 8 lines] > the sucker out of there for good but am a little gun shy. Any thoughts > would be GREATLY appreciated. Surgery, unless there is a medical contra-indication, is almost always the first recommendation. It most certainly is such from a urologist; that's how he pays his bills.
With the numbers reported, it does not seem to me that there is any need to rush into tx (treatment). There is plenty of time to review the options and their side effects -- and all options have side effects.
Here are my recommendations, which I fervently wish I had known about two years ago:
1. Have further staging tests performed so that the full nature of this particular disease (and they're all different to some degree) is known and can be dealt with. IOW, know your enemy. Those tests are covered in the references below.
2. Consult a radiation and a medical oncologist. The more test results in hand, the better the advice they can give.
3. Go to the authoritative website of the Prostate Cancer Research Institute at http://prostate-cancer.org/index.html And follow the links to the areas of interest.
4. Buy and study _A Primer on Prostate Cancer_, subtitled "The Empowered Patient's Guide" by Stephen B. Strum, MD, medical oncologist specializing in PCa, and Donna Pogliano, PCa warrior. It is thorough and, unlike some of the other books on the market, unbiased. I consider that the information I found in that book enabled me to recognize the poor qualifications of a couple of my medics and to fire them. Unfortunately, it wasn't until I had sustained some damage that still afflicts me. In short, I did not in the beginning have the resources that I am now offering to the newly-dxd.
This is the beginning of a no-quarter war against a merciless killer. The choice of weapons is entirely the patient's and he must in his own self-interest prepare himself to make an informed decision.
Please keep us up to date.
Regards,
Steve J
"If you know the enemy and know yourself, you need not fear the result of a hundred battles. If you know yourself but not the enemy, for every victory gained you will also suffer a defeat. If you know neither the enemy nor yourself, you will succumb in every battle." --Sun Tzu, "The Art of War"
> TW Ed Friedman - 21 Sep 2005 19:07 GMT > I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 9 lines] > would be GREATLY appreciated. > TW TW,
If you are looking to explore all possiblities, then I would strongly suggest that you check out the web site at: http://prostateweb.com Bascially, Dr. Leibowitz has been close to 100% successful in treating PCa for stages T1-T3. To get some balance, you should also check out the web site at: http://web.archive.org/web/20030816154313/http://www.prostate-help.org/caleibo.htm When you read about the doctors who are unable to repeat Dr. Leibowitz's results, you should realize that in my opinion, one of the main reasons for Dr. Leibowitz's success is the fact that he tells his patients to avoid all phytoestrogens, especially soy and flaxseed, which these other doctors do not do. The theoretical reason that this is so important is shown in my paper at: http://www.tbiomed.com/content/2/1/10 and will be made clearer in my next paper.
Besides Dr. Leibowitz, there is one other doctor in L.A. and one doctor in Chicago that can properly implement this treatment.
Good luck,
Ed Friedman
Steve U - 22 Sep 2005 01:01 GMT TW, Sorry to hear of your misfortune. Only you can decide what is best for you. Take your time and read all you can. Most of the guys here did that, and we came to different conclusions. Most sound happy with their decisions, and you probably will be too. I had a Robotic Laparoscopic RP in February of 2004. You could look at the Hartford Hospitals website www.harthosp.org for information about the procedure. They have a video of one of the operations that you can watch on your computer, and the doctors explain everything. I went there and I am very happy with my results. I was able to go home 20 hours later, and back to work day 6. Now I never leak, and a most of my erection ability has returned. The worst part was waiting between the diagnosis and the surgery. I picked surgery because I think it offers the best chance of a complete cure. PSA is expected to drop to nothing. You can have the pathologist go over the whole gland, nor just tiny pieces of it. Also, I wanted to take the hit on erection and continence at the start and get it over with. If you get good results from surgery, it lasts. All the treatments have potential benefit and risks. Check them all out. My PCa stuff is: age 50 PSA 4.5 Bx showed High Grade PIN 5 months later PSA 5.6 repeat Bx 1/12 cores <1mm gleason 3+3=6 stage T1c RLRP 2-11-04 at age 50 Favorable path, 5 small foci of 3+3, organ contained Post op PCAs <0.1
Steve U
I. P. Freely - 22 Sep 2005 03:09 GMT TW . . . I'm already seeing advice biased by anecdotal results and misrepresented facts, so let me emphasize the best advice I've seen here so far: READ!!! Every one of the 10-12 PC books and dozens of MAINSTREAM websites (e.g., major universities and hospitals, NIH, ACS, and others you'll see referenced here) I studied and each oncology specialty I consulted (surgery, radiation, medicine) was worth the expense, time, and effort, as each addressed a new part of the puzzle. You have many months before you need to act, and a LOT to read, so get started. I probably spent a few hundred hours on it, which REALLY came in handy when I had to make a potentialy very serious follow-on treatment decision after my initial treatment.
The scope of the issue is immense, but as you read, a clear choice should emerge to suit YOUR case, YOUR choices, and YOUR preferences. If not, you probably haven't studied enough yet. I'd liken your assignment as equivalent to two or three challenging college courses in general, but your early, low-grade, case may shorten the decision task.
I.P. Freely
Tdub - 22 Sep 2005 02:31 GMT I'm also TW, a 55 y.o. I had RRP 2.5 years ago. My stats were worse than yours, but not bad enough to risk mestast. If I was you, with your minimal PCa stats, I would select seeding, and demand the minimum amount (with dr's advise), and then monitor closely. That's because my RRP results have been somewhat disastrous - maximum incontinence and severe bladder neck restrictions making an artificial sphincter a challenge. I believe the stats on incontinence for RP's are: like about a third have some leaking permanently, and on impotence about half become so permanently. Because your PCa is early, take it out with seeds, my man! I think others are downplaying the problems, and since you are at an early stage you may be able to undergo a milder procedure to get a cure (with monitoring!).
Steve Jordan - 22 Sep 2005 03:03 GMT Some folks have written recommendations of certain txs -- without knowing the full medical history of this newby and without the slightest hint of medical training.
This is a disservice to a man who has come here for guidance but not (I hope) for medical advice.
Brothers, the very most any of us should do is to recommend information sources and, secondly, if we feel we must, to inform the newby about our experiences *WITH* the caveat that anything we say in that regard is anecdotal and probably irrelevant to the results anyone else might experience.
I would not want to think about what might happen to a man who decides upon a course of tx based upon my experience -- or that of anyone else.
IOW, puh-lease refrain from recommending any particular course of tx. It's not doing the newby any favor, and may injure him.
Regards,
Steve J
"No man is an Island, entire of itself; every man is a piece of the Continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friends or of thine own were; any man's death diminishes me, because I am involved in Mankind; And therefore never send to know for whom the bell tolls; It tolls for thee." -- John Donne
Pops - 22 Sep 2005 14:16 GMT Steve,
I have to agree with you about the specific treatment recommendations being posted here and to submit my apology for my tendency to preach. I think we're all prone to doing so as we have each made difficult decisions and will, as a result, tend to back our personal treatment decisions up with alot of energy and committment - as if it is the only way.
You are right - each of us is different and unique and has the right and responsibility to evaluate our options using the best unbiased professional information we can find. For some these decisions will be difficult. For some they will be easy.
In that context, let me explain my sextent biopsy comments. Our PSA histories are very similar alothough I was somewhat older. My research as I approached biopsy led me to the viewpoint that I was going to treat the biopsy as a cancer detection process, as opposed to a cancer quantification process. In other words, if cancer was detected, and given my PSA levels, it was coming out regardless of specific Gleason or stage (of course either at extremes might have added to my treatment regime) and I would wait for accurate pathology reports regarding the gland, the lymph nodes, and the seminal vesicles to make further decisions.
I had the choice of several UROs and my selection process considered many factors beyond the treatment. The URO I chose had an excellent and extensive record (I found his bedside manner to be lacking). Regarding diagnosis and treatment he stated that if the DRE had been positive, give my PSA level and history (an order of magnitude increase in one year) he would have recommended beginning curative treatment WITHOUT a biopsy inorder to spare me from the stress caused by the process. As it was, my DRE was totally normal as was the size of the gland. He was still sure I had cancer, but he felt it necessary at that point to prove it.
Now for the biopsy. The cores are about 1/4 inch long and about a pencil lead in diameter. they are taken from a gland about 1 to 1.5 inches in diameter. If you do the math a sextant biopsy you are replacing about 5% of the gland with scar tissue, not to mention the damage to the large intestine and urethra. Those numbers double with a 12 sample biopsy. Sure, you are improving your chances of detecting cancer, and sure the gland is probably gonna come out (or be killed) anyway, but what if you don't have cancer, and what about the damage to the organs that have to remain (I've had a colonoscopy after the biopsy and the scar tissue ain't pretty). Let's try this another way and try to look at it without numbers. We want to be absolutely positive that we do or don't have cancer so why not 24 cores, or 36, or 48, or ... You can see where this is going. The absolute proof would sample all of your prostate (nothing left) but then you would be absolutely sure (and prostate-less, to bad if the results were negative - but then you know for sure).
Anyway the sextant detected it as he expected and the numbers were gleason 7 and T2a (although he gave no real credence to the staging analysis coming from the biopsy). When the gland came out the pathology indicated gleason 6 (3+3) in two tumors, one in each lobe, one about the side of a dime and the other the size of BB with no breach, and no lymph node or seminal vesicle involvement.
So to your point. If you're going to use the biopsy as a mechanism to determine your treatment plan (beyond cancer detection) then more cores may be appropriate. I am a deterministic guy and radiation does not give deterministic results (lymph nodes, seminal vesicles, surface breach etc.). I was willing to risk the SEs of surgery. Those are personal decisions and I (we) have no right to push our viewpoints on others, particularly since none of us are professionals medically speaking.
I am years behind you in the progression of my treatment. 10 months out with 5 PSA readings beginning the third month and monthly thereafter for obvious reasons: 0.24, <0.1, 0.12, <0.1, <0.1. After the last reading my Uro gave me a 3 month respite so that my needle tracks can heal and pronounced that he thinks I maybe cured (but we'll know after 5 years). I smiled, knowing your history. I'm prolly not out of the woods yet!
At least the colonoscopy gave me a 10 year free and clear!
You've given our newbie some great recommendations and I commend you.
Steve Jordan - 22 Sep 2005 17:15 GMT (snip fascinating review)
> You've given our newbie some great recommendations and I commend you. Thanks.
And I very much appreciate the time taken to compose such a clear and logical explanation of the purpose behind the use of a sextant biopsy.
Regards,
Steve J
"Never -- never -- never give up! Never go gently. There will be plenty of gentle after we die, so until then -- fight -- control the rhythms and tempo of the dance, even when you have to let the PCa dancing bear lead for awhile -- even when you have to wear the lead suit as you dance -- never let the bear set the rhythm and tempo of your dance with life -- when the bear finally takes control, it will be a very hollow feeling for him, because I will be gone -- dancing in a better place." --E. B. (Burns) Mixon, PCa survivor, June 14, 2005 on The Prostate Problems Mailing List Thank you, Burns. Live long and prosper.
I. P. Freely - 22 Sep 2005 17:15 GMT "Pops" wrote >
> At least the colonoscopy gave me a 10 year free and clear! So did mine. Then within three years a tumor that wasn't there got big enough and metastasized to the point its threat to my life is far more imminent than my PC. Go back in 5 years, at the latest.
I.P.
Tdub - 23 Sep 2005 01:52 GMT The only thing people are doing here are looking for treatment options to discuss with their doctors, and others telling them their experiences and what should be taken up with their doctors. It's kinda silly to think that someone is going to select a treatment option based on what they read here, and then go to their doctor and expect them to do exactly what was suggested here. That is not the point of a forum like this. It would be malpractice for a doctor to do what a patient told him to do, without the doctor making an independent judgment. So don't fuss about the way others choose to phrase their thoughts and suggestions - we all know this is a "corner drugstore" discussion-place, not a college of urologists. People come here to get ideas and hear viewpoints, which is food for thought for them in helping them resolve issues - it certainly isn't the final answer. They don't come hear to get milk-toasty dribble drabble bla bla bla to feel better for the rest of the day. A guy comes in here with very mild Pca, is young and needs to explore possible solutions in order to maintain an intimate partner relationship, and what have you to offer? He wants to hear what others would do/think about in his shoes with their experience. Nothing more, nothing less. He isn't here "just to talk to somebody", "cry on people's shoulders" or get "warm and fuzzy" responses from others. Some of you give the same answers all the time and think you're the proprieters of the forum, telling others what to say and what not to say ("don't say this, don't say that"). I say if that is all you have to say hang up your hat and give it a rest.
Steve Jordan - 23 Sep 2005 02:29 GMT On September 22, Tdub wrote, in pertinent part:
> Some of you give the same answers all the time > and think you're the proprieters of the forum, telling others what to > say and what not to say ("don't say this, don't say that"). I say if > that is all you have to say hang up your hat and give it a rest. "Everyone is in favor of free speech. Hardly a day passes without its being extolled, but some people's idea of it is that they are free to say what they like, but if anyone says anything back, *that* is an outrage." --Sir Winston L. S. Churchill
Regards,
Steve J
Steve Kramer - 24 Sep 2005 03:23 GMT TW,
I agree with Mr. Jordan. I believe in my initial response to you, I mentioned surgery. If so, I did so in reflection of your post. At your age, the whole world of PCa treatment is open to you. My salient point was that inaction was counterindicated.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum
> Some folks have written recommendations of certain txs -- without knowing > the full medical history of this newby and without the slightest hint of [quoted text clipped - 25 lines] > tolls; It tolls for thee." > -- John Donne James A. Honeychuck - 24 Sep 2005 08:55 GMT > TW, > > I agree with Mr. Jordan. I believe in my initial response to you, I > mentioned surgery. If so, I did so in reflection of your post. At your > age, the whole world of PCa treatment is open to you. My salient point was
> that inaction was counterindicated. Unless the patient absolutely, positively cannot live with the possible side effects of treatment.
Once or twice a year there is someone on this list who is so miserable from impotence that he is suicidal. I wonder if those men should have let themselves go untreated in the hope that their PCa would not develop.
jimhoney
Steve Jordan - 24 Sep 2005 09:50 GMT (snip)
> Once or twice a year there is someone on this list who is so miserable > from impotence that he is suicidal. I wonder if those men should have > let themselves go untreated in the hope that their PCa would not develop. At a PCa conference last week, I met such a man.
In appearance he was unremarkable, age ~65. He had very strong opinions about medics -- rather like some of mine. But he had elected several years ago to forego all tx. I did not inquire about his reasons, though I got the impression that he hates medics and simply didn't want to deal with them.
He told me that his PSA is ~500 and the PCa has metastasized to his bones.
His prognosis is what one would expect in the circumstances, but he seemed ready to accept what we know is bound to be an agonizing death.
I simply cannot understand a man like that....
Regards,
Steve J
Steve Kramer - 24 Sep 2005 11:52 GMT I guess I could put in a qualifier that my opinions are based on related priorities being, probably; 1. Mobility 2. Life
10. Continence
110. Potence
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum
> > TW, > > [quoted text clipped - 13 lines] > > jimhoney Peter Headland - 22 Sep 2005 15:25 GMT > I believe the stats on incontinence for RP's are: like about a third have > some leaking permanently, and on impotence about half become so > permanently That is borderline scaremongering. A competent surgeon has far, far better statistics than those. My surgeon quotes 5% with some leaking (2% serious); 30% functionally impotent (like most, he counts those who need pills as potent). And the numbers get much better if you are young and fit, with good pre-op function and early-stage disease. These above figures are fairly standard amonst the top surgeons. Even those who are impotent can usually still experience orgasm.
FWIW, I chose surgery because of the "certainty" offered by the post-op pathology - I now know how much was in there, how severe it was, and that nearby stuff was not involved. Radiation offers little or none of that certainty, and everything I have read indicates that the SEs are not significantly different long term. But that was my personal decision - TW has to make his for himself.
One general comment, TW - this group is disproportionately populated with people who have problems. We get a great many people who show up, get treated, then vanish from this group because prostate cancer is no longer a big issue in their lives. So don't read too much into the comments from people hre who have had bad experiences - they are the unlucky ones. Put another way, you could be run over by a bus tomorrow; the only real safety is in the grave.
 Signature Peter Headland
Tdub - 23 Sep 2005 02:46 GMT That is borderline scaremongering. A competent surgeon has far, far better statistics than those. My surgeon quotes 5% with some leaking (2% serious); 30% functionally impotent (like most, he counts those who
need pills as potent).
Individual surgeons tend to be overly optimistic as to their accomplishments. Only the studies are reliable.
Ron B - 23 Sep 2005 14:42 GMT Sorry Tdub, I respectfully disagree with some of the things that you said.
You wrote in part:
"They don't come hear to get milk-toasty dribble drabble bla bla bla to feel better for the rest of the day...
A guy comes in here with very mild Pca, is young and needs to explore possible solutions in order to maintain an intimate partner relationship, and what have you to offer?...
He isn't here "just to talk to somebody", "cry on people's shoulders" or get "warm and fuzzy" responses from others."
I think folks come here for ALL of those reasons...and MORE.
Also, though I got into the drug biz long after the soda fountain era...I could dig up some white paper, pointed dixie cups with the metal holders and whip up a few "Green Rivers" or Cherry Cokes" for you guys if you wish. (Only a nickel, of course. :-)
The 'corner drugstore' analogy is a nice friendly one.
Best to all,
Ron B.
Chicago
John Loomis - 22 Sep 2005 17:02 GMT Hello TW: I had RP in 1999. I was 49 then, and to this day do not have any problems..I was considering radiation as per a Dr.s reccomendation, but went on to find that RP was right for me.(so far) You never know what treatment will or will not work. I was spared one nerve, and was worried about sex. Well after 1 to 2 years of regaining the nerve......I am really doing fine. I do use 1/3 of a 100mgs viagra for a boost. It helps, and so, if I recall that radiation and or seeds can have similiar effects to erectile function after time. It is a tough decision. Good wishes, and ask me any question you may have. John Loomis
> I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 9 lines] > would be GREATLY appreciated. > TW Tony - 24 Sep 2005 02:47 GMT Wow TW,
Sure got a lot of responses,
My 2 cents:
Diagnosed on my 58th b-day with similar numbers my PSA was 4.1 This is,as you know the hardest part, followed by, after you've made your decision the waiting until your TX is over.
Bought a case of pads, had to return them un opened. - skilled surgeon, kegels and luck Mr. Happy came back to life exactly 9 months to the day - used a pump hated the headaches from Viagra et all - loving wife (for inspiration) lots of practice and skilled surgeon, and luck.
Many of the guys in our local USTOO group have had radiation, seeds and otherwise. Find your local peers, listen to them they'll tell you the real story (what your doctor won't or can't) face to face. Find the best doctor you can- whatever TX you choose. I went out of my PPO to get to the guy who's done 1000+ it was/is worth every penny.
When you make your decision, own it it's yours and don't look back. You are today a survivor.
Keep us posted on your decision and outcome, we all learn from one another
Tony in Tucson
> I'm a very fit and active 57. A lump was found during DRE. It was > confirmed as PCa last week. Relevant numbers are PSA 1.7, stage T2a, [quoted text clipped - 9 lines] > would be GREATLY appreciated. > TW
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