Medical Forum / Diseases and Disorders / Prostate Cancer / June 2006
Just Diagognosed with Prostate Cancer
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The Gendrons - 09 Jun 2006 02:58 GMT Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. Staging score 2. Only small portion of right lobe affected. Offered Radical Prostatectomy or Seed Implants. Your thoughts as to which way to go. Thanks
Steve Kramer - 09 Jun 2006 10:44 GMT > Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. > Staging score 2. Only small portion of right lobe affected. Offered > Radical Prostatectomy or Seed Implants. Your thoughts as to which way to > go. Welcome, Gendrons, to the club no one wants to join.
Which way to go? Straight to the book store and Internet.
While at the store, pick up prostate cancer books by Dr. Patrick Walsh, Dr. Steven Strum and Dr. Peer Scardino. The latter book might be the easier to get through, but there is very important information in the other two. Walsh's book was the bible five years ago, but with all that is going on now with prostate cancer it is becoming dated. But, it is still a good jumping off book for what you will go through.
Also, hit the Internet. www.Phoenix5.org was my first best site, but it too is kind of dated. It's creator died 3 years ago this month. There are others that our fell members will list for you.
The most important thing now is reasearch. All of us here will help you muddle through it.
Oh, and how old are you? Very important.
 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, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum
Steve Jordan - 09 Jun 2006 11:58 GMT > Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. > Staging score 2. Only small portion of right lobe affected. Offered Radical > Prostatectomy or Seed Implants. Your thoughts as to which way to go. > Steve Kramer's advice is good, and he quite properly pointed out that the phoenix5 website and the Walsh book are both outdated though useful to some extent.
The latest book, second edition just published a few months ago, is _A Primer on Prostate Cancer_, subtitled "The Empowered Patient's Guide," by medical oncologist and prostate cancer (PCa) specialist Stephen B. Strum, MD and Donna Pogliano, PCa warrior. It helped me tremendously.
I also recommend the authoritative and objective website of the Prostate Cancer Research Institute at: http://prostate-cancer.org/index.html
It's homework time, in preparation for war.
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"
> judamd@aol.com - 09 Jun 2006 16:05 GMT Too bad about the news. Everyone here knows pretty much what you're going through. The fixes include surgery (open, laparoscopic, robot assisted laparoscopic) and radiation (seeds and external beam among other). All of the standard treatments that have been around for more than a few years offer roughly the same long-term statistics for cure/survival. There are a couple of newer treatments such as cryosurgery (freezing) and HIFU (I think this is correct - High Frequency Ultrasound which means cooking) but these aren't done everywhere and cryosurgery has had mixed results and HIFU is too new to tell. So, after you're through with all the reading and research along with plenty of opinions from this group, you will have to make your own decision and it's not a simple one. I based mine on Quality of Life after treatment - namely, what side effects I could tolerate and which I couldn't tolerate. Most guys have no significant side effects but many do so these should enter into your decision making process. Good luck with all this and please feel free to ask any question that comes to mind. If you look back into the archives of this newsgroup you'll find that no one here is shy, no aspect of this disease is off limits, and everyone here will readily offer his/her (spouses contribute too) experiences and opinions. Dave Perry
> Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. > Staging score 2. Only small portion of right lobe affected. Offered Radical > Prostatectomy or Seed Implants. Your thoughts as to which way to go. > Thanks friendofcurtis@yahoo.com - 09 Jun 2006 16:21 GMT > Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. > Staging score 2. Only small portion of right lobe affected. Offered Radical > Prostatectomy or Seed Implants. Your thoughts as to which way to go. > Thanks ditto what you have been told by the others, especially the research and that in the end you have a very important decision to make. you have to make it and you have to live with the results, so get all the information you can before hand.
my experience, and bias, is RRP (they did not do laparoscopic or the robot at the time where i was treated). keep in mind that most say you can do surgery first, and then have radiation if that is needed later, but that does not work the other way around. the point is that you have two swings at the beast. things change. my surgery was three years ago, so again, read all you can. and do not be surprised by the different "facts" that you will find. there is a lot yet to be learned about this disease and there is a lack of uniformity in statistical gathering and reporting. there are some physicians that participate here, but most of us are not doctors, so remember that.
on side effects, incontinence and impotence being the main two for the surgical option, i somehow came out of this experience having both. lucky me. but i can say with certainty that i would rather be in the position i am in now rather than be living with the cancer. so take the side effects (SE) seriously, but keep things in perspective. your task is to beat the cancer.
finally, you are in a very good group here. there are people that can answer questions about all the treatment options and everyone is here to help you all they can. good luck!
David S.
You smiled, you spoke, and I believed - 09 Jun 2006 16:34 GMT > Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. > Staging score 2. Only small portion of right lobe affected. Offered Radical > Prostatectomy or Seed Implants. Your thoughts as to which way to go. > Thanks I had brachetherapy in Nov, 2005.
I am happy with the result so far.
An acquaintance had the radical prostectomy at about the same time.
He had more discomfort than I did, but he is doing fine now.
One of the side effects is your sex life.
If I had the same decision to make today, I might have opted for watchful waiting.
j.
Bill - 09 Jun 2006 17:00 GMT Age, general health, family history, PSA history, 3+4 or 4+3, how involved do you want to be in your Tx?
One thing you will find is that if you know what discipline a doctor is in and what camp w/i that discipline he is in, you will already know what they will tell you. Generally, urologists cut, radiation oncologists zap, and medical oncologists castrate in one way or another. If you find a doctor you really like and trust, you can just do whatever he says and not look back. Or you can educate yourself enough to recognize the biases and make a more informed decision.
I can tell you right now that Walsh would say RRP, his "gold standard." Rad-oncs will tell you that RT is just as good. Most med-oncs except perhaps aggressive activists like Strum don't even fool w/ primary Tx. Strum would want every conceivable obscure test to be done, and have your slides re-examined by one of his list of PCa pathology experts. If you recur, Strum will want to start hormone Tx immediately while Walsh and most med-oncs will tell you there is no reason to do so until you have clinical symptoms. You will hear differing, if not conflicting, opinions and it goes back to what the doctor is familar w/, where he did his specialty training, etc. I like a guy who is knowledgeable about everything PCa and keeps current on the literature - don't be afraid to put them to the test.
Bill Denton RP 2/12/02 PSA .93 Memphis
I.P. Freely - 10 Jun 2006 18:30 GMT > If you find a doctor you really like and trust, you can just > do whatever he says and not look back. I don't agree with that approach if the patient or his partner is willing and able to do the research necessary to make one's own choice. My reasons include: 1. Doctors are biased by oath and mindset to maximize life span at any cost. That's optimal only if the patient's priorities agree. 2. It would be the very exceptional patient and doctor who had the ability, motivation, and time to educate the doc so thoroughly in the patient's personal priorities that the doc could make the choice for the patient. i.e., There are probably more patients who can learn enough about their treatments options to make a valid choice than there are docs who can or will learn a patient's life's priorities sufficiently to make the same choice a savvy patient would have. Why? Because most of us don't even KNOW our priorities until we face this dilemma, and communicating them adds a whole 'nuther layer of complexity. I suspect its easier to learn cancer stats than to learn another's psyche. 3. It has been established in many arenas that people heavily involved in their own decisions -- from what to have for lunch to whether to have major medical procedures -- fare much better than those who delegate their choices to others. Better outcomes, less second guessing, etc. It's US, not the doc, who has to live or die and balance our side effects based on our decision (complicated by luck). 4. Many patients base their choice of physician on personality or karma rather than true competence, so a doc-based decision process often starts out flawed. (e.g., my obese in-laws loved their doctor because he told them it's perfectly alright to live on candy and cake.)
I.P.
fred@aol.com - 09 Jun 2006 22:18 GMT >Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. >Staging score 2. Only small portion of right lobe affected. Offered Radical >Prostatectomy or Seed Implants. Your thoughts as to which way to go. >Thanks What no External Beam Radiation ??
I received the news last week also, and have spent a lot of research time (mostly on the internet). I feel that the three of the most important things are choice of doctors, hospitals, and treatment options. Fortunately, I live in the Boston area, and after much interneting, have found the Boston Medical which uses a team approch consisting of surgeons, uros, and radiation guys. I have a meeting with them next week, at which time we can discuss all the options, side effects, etc. Maybe you can find a hospital that uses the "Team Approach" also.
By all means, as others have said before me, do your homework, and don't be intimidated by someone's favorite approach.
Herb
Glowing in the Dark - 09 Jun 2006 22:42 GMT [snip]
> Maybe you can find a hospital that uses the "Team Approach" also. Heh, I have one. I would describe it more accurately as the "Marketing Approach" :-)
 Signature Glowing in the Dark
fred@aol.com - 10 Jun 2006 03:20 GMT Glowing,
What do you mean by "Marketing Approach"
Herb
>[snip] >> Maybe you can find a hospital that uses the "Team Approach" also. > >Heh, I have one. I would describe it more accurately as the "Marketing >Approach" :-) Glowing in the Dark - 10 Jun 2006 03:58 GMT > Glowing, > > What do you mean by "Marketing Approach" I mean they are constantly running commercials showing the "team" standing behind the grateful patient and his fawning wife, all of them standing in a field of daisies and butterflies, mulling over his case and looking all "scientific" and collegial.
The reality is an overcrowded assembly line where on every visit they ask "now what are you here for?" and the supposed members of the "team" are in different buildings without any perceptible interaction. Your assigned doctor has less than 15 minutes to try to remember your situation and, in my experience, they don't even read their own notes before entering the room, but rely on questioning you to get up to speed. Plus you have to rehash your whole case with the nurse, then the medical student, and then, finally, with the doctor. I never have understood the value-add in that.
It's kind of like the pictures of the food on the menu in the fast food restaurant vs what they serve you :-)
I suppose we all think our situation is special but from their perspective I suspect we all look alike and one size pretty much fits all.
 Signature Glowing in the Dark
fred@aol.com - 10 Jun 2006 16:14 GMT Glowing,
I absolutely agree with you. In my case, and what I meant, was the team approach at the initial visit. I will have a team all together in one room, to present their views, and answer any questions.
Hopefully, this and my extensive research will help me make a treatment decision.
Additionally, I can't get it up due to very high blood pressure and all sorts of medication. Maybe I'll find a cure :-)
Thanks again for the advice.
Herb
Bill - 10 Jun 2006 16:32 GMT "I will have a team all together in one room, to present their views, and answer any questions."
Herb, if you can get that, that is fantastic. But rare. I went to M.D. Anderson for a "2nd opinion" and in advance told the appointment nurse that I wanted a rad-onc and a med-onc to review and discuss my case before I get there, and then sit down w/ me and hash it out. I expressly said that was what I wanted and could they do it that way. No problem, she says. When I got there they had set up an appoinment w/ a med-onc and had me scheduled for a whole battery of tests. That's it. I insisted on seeing a rad-onc and they were able to get me in w/ one and I think he and the med-onc touched base via phone. Needless to say, I was rather dissappointed in what I got for around $1600.
Bill Denton RP 2/12/02 PSA .93 Memphis
I.P. Freely - 10 Jun 2006 19:19 GMT >> Glowing, >> [quoted text clipped - 13 lines] > whole case with the nurse, then the medical student, and then, finally, with > the doctor. I never have understood the value-add in that. Wow! My experience was SO different from that. Past my first couple of local docs while we were doing my initial tests, I never saw another nurse and the 6-8 oncs I saw had my complete history on the screen and had read it when we met for each appointment. And I often saw my ultimate doc emerge from the onc board -- the "Team"" -- meeting with fresh results or advice for me in his hands and/or on his lips. The team also responded to my e-mails, letters, and/or inquiries brought up by my doc. I also met with my doc, once also with other consulting onc, for an hour or two, never perceiving any rush, on several occasions. His initial phone call to me, before we ever met, lasted over an hour.
Of course, now contrast that with the NIGHTMARE in the recovery ward, and it might be argued that things balance out.
I.P.
I.P. Freely - 10 Jun 2006 18:42 GMT > [snip] >> Maybe you can find a hospital that uses the "Team Approach" also. > > Heh, I have one. I would describe it more accurately as the "Marketing > Approach" :-) I hear that, but one of the reasons I chose the hospital I did was because it included a board of oncologists from many specialties who discussed my case weekly and advised me for over a year post-treatment. They still do that when changes in my case or in technology warrant it., or if I ask them a challenging question. I don't think I'd have gotten that range of expertise from my initial sources.
I.P.
The Gendrons - 09 Jun 2006 22:30 GMT Also am concerned with leaking . Is it outright incontinence or just dribble. Do Kagle exercises help?
> Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. > Staging score 2. Only small portion of right lobe affected. Offered > Radical Prostatectomy or Seed Implants. Your thoughts as to which way to > go. Thanks Steve Kramer - 10 Jun 2006 00:32 GMT > Also am concerned with leaking . Is it outright incontinence or just > dribble. Do Kagle exercises help? Kegles help. But you have to do them. That' my biggest problem. I don't remember to do them.
Incontinence is often the Number 1 concern; almost always before sex and sometimes before life. But, we who leak find pads are a reasonable accommodation.
 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, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum
I.P. Freely - 10 Jun 2006 19:03 GMT > Incontinence is often the Number 1 concern; almost always before sex and > sometimes before life. And it shouldn't be. So I'm back in briefs again after decades in boxers. So my briefs are made by Depends rather than Jockey. So the celebrity on the package is June Allison rather than Jim Palmer or Tom Cruise. So I now change shorts twice rather than once daily. So I pee in my wetsuit while windsurfing (I always did ANYWAY, but just didn't -- and still don't -- advertise the fact).
Now compare those non-events with fecal incontinence or extreme urgency, a raging itch I can't fix or scratch, frequent raging diaper rash, and/or rectal cancer ten years down the road.
Neither outcome is common, but their odds are probably fairly similar; the latter may be even more likely than the former. My point: minor or even moderate urinary incontinence is in the mind, not the flesh, while bowel problems are REAL!!! The former is a logistics issue, the latter a torture I would wish on only a handful of politicians.
I.P.
Steve Kramer - 10 Jun 2006 19:16 GMT >> Incontinence is often the Number 1 concern; almost always before sex and >> sometimes before life. > > And it shouldn't be. Concur. In my mind, it should not be. Having suffered from intermittent incontinence, I have discovered that more pressing concerns include such things as air conditioning.
I.P. Freely - 10 Jun 2006 19:22 GMT >>> Incontinence is often the Number 1 concern; almost always before sex and >>> sometimes before life. [quoted text clipped - 3 lines] > incontinence, I have discovered that more pressing concerns include such > things as air conditioning. Ditto . . . and I'm not even on hormone therapy.
I.P.
I.P. Freely - 10 Jun 2006 18:36 GMT > Also am concerned with leaking . Is it outright incontinence or just > dribble. Do Kagle exercises help? It's all about statistics. Individual answers range from absolutely yes to absolutely no for just about any question you could ask, including those. It looks like I'll be in pads or diapers for the rest of my life, but at least there IS a rest of my life now, and Mormons CHOOSE to wear funny underwear. Beats the HELL out of a burning rectum.
I.P.
Peter Headland - 10 Jun 2006 22:55 GMT > Your thoughts as to which way to go All I can tell you is why I made the decision to have RRP (radical prostatectomy). Your priorities and circumstances might be totally different from mine, so you must make your own mind up.
I was diagnosed T1 and Gleason 3+3=6 at age 47. So my case was a little less bad than yours. Being 47, I had the ambition to live another 40 years or so. I watched my father die unpleasantly of PCa (prostate cancer) at age 64, two years after he was diagnosed because of severe symptoms (he couldn't pee and needed a catheter). Given my age and family history I was disinclined to choose "watchful waiting".
I was willing to take the (low) risk of urinary incontinence and the (much higher) risk of impotence associated with surgery. My mother died of colon cancer in her early forties, so I was concerned about the (small) additional colon cancer risk from radiation. I was unwilling to risk faecal incontinence (a slight risk with radiation).
Psychologically, I wanted the cancer out of me and I wanted to know how much of it there really was (biopsies are a bit of a crap shoot), plus I wanted to know for certain if lymph nodes, seminal vesicles, etc. were involved. You only get those certainties with surgery. I had no great fear of surgery, anaesthetic, pain, etc. and my health and fitness were good.
I liked the fact that you can always "mop up" with radiation after surgery, but it is nearly impossible to use surgery as a second treatment once you have had radiation.
I chose open surgery over the laparoscopic (with or without robot) version because I am fortunate enough to live 20 minutes away from one of the world's best specialists in open surgery. Being young, slim(ish) and fit, I found recovery very easy with no need for painkillers after the first couple of days.
Coming up to 2 years after surgery I have absolutely no regrets. I know (from the detailed pathology report on the bits they cut out of me) that my cancer was contained within my prostate, so I really don't worry about it ever coming back (of course, there's a chance it had already spread to some distant spot, but I choose not to believe that). I was almost perfectly continent from the moment the catheter came out, and continence continues not to be an issue for me. Impotence is still a problem, but I can manage satisfactory sex with the aid of a vacuum pump or even just a "cock ring", so it isn't a big problem. To put that in perspective, I am on the very lucky end of the scale for incontinence, but I'd say I was slightly unlucky on the impotence scale (given my age, health, sexual function prior to surgery, and the fact that both nerves were easily spared). I'd rather be limp than leaky anyway.
As I said, it's up to you to judge how relevant any of the above is to your situation.
 Signature Peter Headland
Bob Anthony - 11 Jun 2006 15:40 GMT Excellent reply, Peter. Basically the same reasons that I chose RP as well. The only difference is that, as far as I know, no one had PC in my family or colon cancer. I also went with the robotic procedure because there was a very good medical center 20 minutes from my home with a prostate cancer surgeon who had done over 1000 open RP's and over 300 laparoscopic ones. Of course, everyone should make up their own minds after having done their own research, as you certainly have done.
B.A.
Peter Headland - 12 Jun 2006 18:17 GMT > Coming up to 2 years after surgery D'oh! That should have been "1 year after surgery". I guess that tells you something aout how I view the whole thing as history (or that I'm prematurely senile).
 Signature Peter Headland
juniper - 13 Jun 2006 01:37 GMT > > Coming up to 2 years after surgery > [quoted text clipped - 4 lines] > -- > Peter Headland Probably feels like 10 years. We're coming up on 3 months after surgery, it feels like a year at least.
The Gendrons - 09 Jun 2006 22:34 GMT Gentlemen: Thank you so much for your response. Nice to know I'm not alone.. Your words mean allot. Regarding Gleason score, what's the difference between a 3+4 (mine) and a 4+3. I know that the scoring is based on the configuration and shape of the Cancer cells. How do I translate the numbering? My grading was a 2a. My age is 62. Outside of the Cancer I'm in good physical condition. My physician is GU and am aware of his professional bias. I've also spoke with a Rad O . Neither Doc seems to be pushing me into their specialization. I'm leaning toward surgery however because I do not want to close any doors later. Have been introduced to a national/local support group US TOO. Any comments? Thanks again
> Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. > Staging score 2. Only small portion of right lobe affected. Offered > Radical Prostatectomy or Seed Implants. Your thoughts as to which way to > go. Thanks judamd@aol.com - 10 Jun 2006 00:17 GMT I'll respond to both your questions with one post. You're going to get a lot of opinions on what constitutes incontinence and the value of Kegel exercises. Some doctors claim you are continent if you need only one pad/day, others say you are incontinent even if you only dribble occasionally. Also, what constitutes a pad changes from time to time. I use Depends Guards for Men and the buggers who make them changed the absorbing characteristics in January of this year (made them smaller) and raised the price to boot. So, where I used to be a one or less pad/day guy, I'm now over one/day thanks to the manufacturer's need for an improved bottom line.
Some guys swear by Kegels, others think they're a waste of time. I fall into the latter group. I think they may have some value in stress incontinence - where you get a dribble with a sneeze or cough. Sometimes just a yawn will do it or moving your body one way or another. There is another incontinence, I'm not sure if it has a name or not, but it's the one where you leak for no damned reason, even with a near empty bladder. It may be caused by a small bladder spasm. Kegels don't seem to do squat for these. Don't fret over incontinence. If you are one of the unlucky five percent or so who end up with some incontinence (as I am), it's not a big deal. You put on a pad in the morning just as you put on your socks. Nobody knows unless you tell them. Crotch-sniffing dogs seem to know though - they head right for me. :) No matter, don't worry about incontinence. You'll most likely have some right after treatment but almost all guys are dry in six months or so.
As for the Gleason score, (3+4) is a whole lot better than (4+3). The first one behaves statistically very much like a Gleason 6, the latter behaves statistically more like a Gleason 8. The problem is, you'll never know exactly what you have unless you get the prostate yanked and the pathologist looks at the whole gland. I forget the stats right now but I think somewhere around 30% of all Gleasons go up after the doc gets a look at the whole prostate. Very few go down. Remember, the biopsy is only a sampling - kind of like looking for raisins in raisin bread by poking with a straw.
Anyway, your Gleason, your PSA, your age, your overall health all give you an excellent chance of beating this thing. Good to see you're already asking questions and getting educated. Keep up the good work.
Dave Perry
> Gentlemen: Thank you so much for your response. Nice to know I'm not alone.. > Your words mean allot. Regarding Gleason score, what's the difference [quoted text clipped - 11 lines] > > Radical Prostatectomy or Seed Implants. Your thoughts as to which way to > > go. Thanks Steve Jordan - 10 Jun 2006 00:35 GMT > Gentlemen: Thank you so much for your response. Nice to know I'm not alone.. > Your words mean allot. Regarding Gleason score, what's the difference > between a 3+4 (mine) and a 4+3. The Gleason grading system is well-explained on the website of the Prostate Cancer Research Institute that I recommended earlier today. Again, the website is: http://prostate-cancer.org/index.html
The difference between a 3+4 and a 4+3 is this: the proportion of Grade 3 PCa cells as compared to Grade 4 cells. BUT it should be understood that, in the case of a 3+4 for example, the amount of Gleason 4 cells could be anywhere from 5% to 49% of the specimen. All it tells us, then, is that the pathologist saw more of one grade than the other; it does NOT quantify the difference.
The grading depends utterly upon the skill of the pathologist who is examining the slides. This is the reason that it is strongly recommended that the biopsy specimens be sent to a specialist for a second opinion (which is probably covered by insurance, if that's an issue. Anyhow, it only costs about $350). Dr. Stephen B. Strum, famous PCa author, recommends Bostwick Laboratories:
David Bostwick, MD Bostwick Laboratories 4355 Innslake Drive Glen Allen, VA 23060 T: 1-866-816-4793 (Jennifer) F: 804-545-9725 www.bostwicklaboratories.com Gleason 2nd opinion $400; ploidy $360 Need patient demographics, insurance info, call to site that has slides/blocks Corrine @ ext 1103 re: second opinion
Medics know about Bostwick and other such specialist labs, but usually will not volunteer the information.
> I know that the scoring is based on the configuration and shape of the Cancer cells. Scoring is based upon the pathologist's opinion of how well-differentiated the PCa cells are. The less differentiated, the higher the score and the higher the risk level.
> How do I translate the numbering? My grading was a 2a. I'm not sure what is being requested, here. The Gleason score requires no translating; it is what it is. The higher the score, the higher the risk. Please see the PCRI site.
As for a "grading" of 2a, that is not related to the Gleason score. Possibly it is related to the clinical stage, which is expressed as, for example, T2a, which means palpable lump (by DRE) on one side of the gland.
The patient (what is his name?) must do his homework, as there is so much to this subject that no one could cover it adequately without writing a book such as Strum & Pogliano's _A Primer on Prostate Cancer_ or a huge website such as the Prostate Cancer Research Institute's (PCRI) site, previously recommended.
This information is available; it is up to the patient to reach out for it. We on this newsgroup try to be helpful, but at our best we can give only anecdotal information. And references to authoritative sources.
(snip)
> Have been introduced to a national/local support group US TOO. Any comments? > I am active with UsToo! and find it to be of great help. Especially when discussing the merits of various medics.
Regards,
Steve J
"The thing is to expect nothing in particular, but (to) be aware of the lack of enforceable guarantees or enforceable contracts with nature/god/entropy as to the condition or durability of our bodies." -- Brian Brunner, PCa survivor, December 12, 2005 on The Prostate Problems Mailing List Thank you, Brian.
Steve Kramer - 10 Jun 2006 00:40 GMT > Gentlemen: Thank you so much for your response. Nice to know I'm not > alone.. [quoted text clipped - 8 lines] > because I do not want to close any doors later. Have been introduced to a > national/local support group US TOO. Any comments? Thanks again 4+3 is slightly worse that 3+4. The score comes from determining the grade of the most prevalent mass and adding it to the 2nd most prevalent mass. So, if 3 is the most prevalent, then you're better off than 4 being the most prevalent. Either is still within surgery specs.
 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, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum
judamd@aol.com - 10 Jun 2006 00:43 GMT An addendum regarding incontinence since I don't think I answered your question. The word is used to describe any amount of uncontrolled leaking. Many guys are totally incontinent right after surgery with no control at all, using six or more pads/day, others are dry from day one (the day the catheter comes out). Even the worst leakers gradually gain control over the next few weeks and months until almost all are dry at six months. The few remaining leakers need less than a pad/day, even a wad of toilet paper is often sufficient for some and others use nothing at all if it's only a few drops a few times a day. A very few need two or three pads per day and of course there are surgical interventions that can often improve things. No matter, you are way too early in the game to worry about pads and besides, if you do end up with urinary incontinence, I think it is probably the best side effect to have if you have to have one although others may (and probably will) disagree. Dave Perry
> Gentlemen: Thank you so much for your response. Nice to know I'm not alone.. > Your words mean allot. Regarding Gleason score, what's the difference [quoted text clipped - 11 lines] > > Radical Prostatectomy or Seed Implants. Your thoughts as to which way to > > go. Thanks Pops - 10 Jun 2006 12:55 GMT > Gentlemen: Thank you so much for your response. Nice to know I'm not alone.. > Your words mean allot. Regarding Gleason score, what's the difference [quoted text clipped - 11 lines] > > Radical Prostatectomy or Seed Implants. Your thoughts as to which way to > > go. Thanks Welcome to our elite and wise inner-sanctum!
You're hearing a lot here, and a lot of "bias". I have mine! I know of only one way to be sure about the extent of your cancer with today's technology - that's surgery.
Toward a cure, there are several treatment alternatives and when you get "down-and-dirty" the statistics just don't converge. Not enough data, not enough time, and big data organizational issues as much of the stats involved cover a period of time when the technologies involved and the detection protcols have changed radically. So no one treatment can be proven to be better than the other. Major side effects for all treatment protocols are about the same; incontinence and sexual performance. Getting "down-and-dirty" again, incontinence happens, but it is not that common. Permanent sexual disfunction is quite common. There are options to minimize the impacts of both side effects.
IMHO watchful waiting is not an option you want to consider unless you're over 70, particularly once the biopsy comes back above stage 1.
So do your homework, identify and apply your issues and priorities, make a decision and stand by it. There is no "Right" answer, and attitude is everything.
By the way, feel free to listen to us zealots, but take everything we say with your own personal grain of salt. We are not you!
Good Luck and God Speed toward your cure!!
juniper - 13 Jun 2006 01:50 GMT > between a 3+4 (mine) and a 4+3. I know that the scoring is based on the > configuration and shape of the Cancer cells. How do I translate the > numbering? My grading was a 2a. My age is 62. Outside of the Cancer Our Gleason at the original lab was 4+3, at the second (specialist) lab, 3+4. At surgery, it was a 9. So I don't hold too much stock with Gleasons. However, your PSA is not bad, and that is good. Have you seen the Sloan Kettering nomograms? I'll enclose a quote and link.
Also, whoever is sending you to the PCRI.org (prostate cancer research institute), I heartily second. They have good nomograms also. (And much, much more information)
http://www.mskcc.org/mskcc/html/10088.cfm
Prostate Nomogram Calculate Treatment Options for Prostate Cancer
Our Prostate Nomogram is designed to help physicians and patients decide which treatment approaches will result in the greatest benefit.
Pioneering Calculator Researchers at Memorial Sloan-Kettering have pioneered the use of computerized tools called nomograms to help patients and their physicians decide among the major treatment choices for prostate cancer. A combination of disease factors including stage of the cancer, prostate specific antigen (PSA) level, biopsy pathology, use of hormone therapy, and radiation dosage have been incorporated into the nomograms.
Pops - 13 Jun 2006 13:40 GMT > > between a 3+4 (mine) and a 4+3. I know that the scoring is based on the > > configuration and shape of the Cancer cells. How do I translate the [quoted text clipped - 24 lines] > prostate specific antigen (PSA) level, biopsy pathology, use of hormone > therapy, and radiation dosage have been incorporated into the nomograms. I must strongly emphasize that the results of these Nomographs can be very misleading and a bit depressing. It IS Sloan Kettering, and I consider the data involved acurate and comprehensive. However it includes OLD data, not adjusted for age, diagnosis and treatment changes over the period it was collected. For example, it is being widely accepted that PSA acceleration is much more important that the absolute numbers. Something not considered here. The 5 year survival rates quoted are IMHO very low compared to today's reality.
I.P. Freely - 13 Jun 2006 17:29 GMT > It IS Sloan Kettering, and I > consider the data involved acurate and comprehensive. However it > includes OLD data, not adjusted for age, diagnosis and treatment > changes over the period it was collected. For example, it is being > widely accepted that PSA acceleration is much more important that the > absolute numbers. Except that we were just told here days ago by another study that PSA dynamics are UNimportant.
And 'round and 'round we go.
I.P.
Pops - 14 Jun 2006 13:19 GMT > > It IS Sloan Kettering, and I > > consider the data involved acurate and comprehensive. However it [quoted text clipped - 9 lines] > > I.P. Fun with statistics!
Unfortunately, for people with cancer, the games played with statisitics are anything but fun.
During my short journey through the cancer world I have found that logic trumps statitistics almost every time. I think the truth re PSA lies somewhere between the two camps. Levels are indeed important but so is how fast they change. A high level (above 2.5 ng/ml) should dictate immediate attention. So does a rapid change (factors of 2 or more between yearly checkups), no matter what the levels (above 0.1). Just makes sense - something's going on.
Me, I'm ignoring statistics these days. Too many things changing. Too many uncontrolled variables. In the world of math it can be summarized as 'the data doesn't converge'.
I.P. Freely - 14 Jun 2006 14:51 GMT > Me, I'm ignoring statistics these days. Too many things changing. Too
> many uncontrolled variables. I think we HAVE to pay some attention to the stats when making important decisions; they're often all we have besides such useless things and anecdotal experiences and emotional reactions. I'm ignoring only the second/unit digits in the statistics. Given a well-supported 86% odds of something bad, I'll listen to and maybe act on the 8, ignore the 6, and hope I skate through the 15-20% GOOD window. A meta-study of 10-20,000 patients is tough to dismiss, especially if it's all we have to decide on.
I.P.
Pops - 15 Jun 2006 16:17 GMT > > Me, I'm ignoring statistics these days. Too many things changing. Too > > many uncontrolled variables. [quoted text clipped - 8 lines] > > I.P. That's the problem with stats! 10,000 - 200,000 patients is surely a lot of patients and with sample sizes that big, data usually converges. Big numbers like that and the stats they imply may lull us into a sense of security or, conversely, cause us to worry greatly. The math involved is complex and the caveats aren't easily passed on to us peons.
That's the problem with PCa stats. The little bit that I've done says that the data simpy doesn't coverge. The variability has caused some cukes to come out of the woodwork declaring that PSA testing isn't necessary. That's not just wrong interpretation, it's dangerous. On the opposite have seen some way out there mortality rate predictions (including the infamous PCa patients who died from everything but PCa) that are downright morose and depresssing. people can make bad decisions when confronted with that kind of information.
Ineterstingly enough I'm watching alot of PCa prime time stuff that is very positive. It basically proclaims that PCa is completely cureable if detected early enough through PSA tests and DRE's. Positive, but a bit misleading. It's theoretically true that all PCa, detetced early enough, can be cured. What isn't said is that PCA testing and DRE's are not infallible or may not be that good at early detection. It's what we've got, plain and simple.
Then there's the definition of "cured".... but "long term remission" sounds so negative...
Beverley - 10 Jun 2006 03:44 GMT You are right on the fence for brachytherapy. If you are near Richmond Virginia I suggest you contact the Massey Cancer center and make an appt with Dr. Hagan.
You also might want to check out the following URL: http://www.cooleyville.com/ He has a tremendous amount of information on radiation for prostate cancer.
Hubby had 5 weeks of EBRT on a IMRT machine and then had brachytherapy. 4 years later his PSA is undetectable. Bev
> Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. > Staging score 2. Only small portion of right lobe affected. Offered Radical > Prostatectomy or Seed Implants. Your thoughts as to which way to go. > Thanks kh - 12 Jun 2006 01:01 GMT > Received the news on Tuesday. Have a PSA of 3.5. Gleason Score 7. > Staging score 2. Only small portion of right lobe affected. Offered Radical > Prostatectomy or Seed Implants. Your thoughts as to which way to go. > Thanks In addition to the advice already offered, do this:
think through your priorities, lifestyle, quality of life, mortality, discomfort, and so on. It's better that you wrestle with these issues before thinking about treatment.
Very likely, any treatment will leave you with temporary urinary problems, sexual dysfunction, months of not-feeling-quite-right.
Surgery leaves some guys dribbling, radiation tends to cause the opposite, can't pee at all. Either treatment can make erections a thing of the past.
Depending on the skill of your doctors AND the luck of the draw, you might have these problems forever. That's the bad news.
The good news is that given your low PSA and not-horrible Gleason, you have a high likelihood of a cure. Not temporary remission, not, oh, we can extend your life an extra couple years, a cure.
The other good news is that depending on your native health, the skill of your docs, AND the luck of the draw, you might experience minimal, temporary, side effects.
Some RP and SI patients have reported a short recovery period and full function in a few months. This is contenance, erections, good orgasms, everything.
This is not the norm but it is common enough and hopefully you'll be one of them.
Before you decide, research this more, a lot more. When you hear really optimistic claims about a treatment, realize that's the best case.
Before you decide, see if your docs have more tests in mind for you. Some may ask for a CAT scan, a radioactive bone scan, a butt-plug MRI, an ultrasound, second pathologist's read of your slides.
These and other tests will help them understand the extent of the disease.
Ask for and keep copies of everything.
Good luck to you. Everyone here has been though this. You are not alone.
kh
Alan Meyer - 16 Jun 2006 04:30 GMT I've been away from the Internet for the past week, so I'm jumping in rather late to this discussion. There isn't much I can add that hasn't already been said by someone else on this thread, but since I'm a loquacious fellow, I'll add my two cents anyway.
I personally had HDR brachytherapy, plus external beam radiation, plus Lupron for an "intermediate risk" cancer and, two and a half years later, I'm still satisfied with the results.
Unfortunately, the scientific studies of which treatment, surgery or radiation, is better have not reached a consensus. The scientists still disagree, often with great heat and not always with great light.
If you took a poll of patients you'd find some people who had excellent results and minimal side effects with either treatment and some who had terrible problems with either one.
My personal view (worth every penny that you're paying for it) is that the skill, experience and commitment of the doctor and his or her support staff is of great importance. A skillful surgeon or radiation oncologist who has a lot of experience, who takes the time to examine your particular physiology, and who applies his or her treatment with full attention, care, and adequate time, is going to have statistically better results both in successfully treating the cancer and in minimizing the side effects. On the other hand, a hit and run artist who treats you quickly and casually, squeezing you and forty other patients in between vacations and rounds of golf, is a threat to your health.
But even with the best doctors, s**t can still happen. A friend of mine had surgery at Johns Hopkins, one of the best places in the world and, six months later, still can't sit more then 15 minutes without pain - though his cancer does appear to be cured.
My advice ...
Be prepared for the worst things that can happen - from incontinence, to impotence, to serious surgical or radiation complications, to chronic pain, to failed treatment and continuing prostate cancer.
Then do the best you can to try improve your odds - learn what you can, get your body in the best shape that you can to recover from treatment, eat a healthy diet, pick the best doctor you can find, and work with him or her as best you can to make his/her job easier and your treatment as successful as you can make it.
Best of luck to you.
Alan
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