Medical Forum / Diseases and Disorders / Prostate Cancer / July 2007
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El Woody - 21 Jul 2007 12:05 GMT Newly diagnosed....
44 yo PSA:2.0 (10/04), 2.6 (10/05), 3.3 (10/06), 3.3 w 9% free (1/07), 4.1 (4/07) normal DREs Biopsy 6/15/07 Gleason 6 (3+3), 6/12 cores, one core 100%, T1c (Clinical), T2b (Pathlogical)
Question: Have decided on RP and am scheduled to talk with two surgeons in August. Their schedules may make me wait until October for surgery. My local surgical urologist who did the biopsy and diagnosis has an opening in September. Should I be worried about a month wait?
The doctors are of no help here at all.
chasjac too - 21 Jul 2007 04:22 GMT Hello, El:
I'm truly sorry you've had to join the group -- and you're so young, too! But there are lots of reasons to hope. Ron has given you some of his wisdom, and quite a few others will join in shortly to wish you well and offer theirs, too.
I'm a little confused by your report, in which you have "T1c (Clinical), T2b (Pathlogical)." Usually, the clinical staging occurs at the time of diagnosis, while the pathological staging occurs after the gland has been removed and analyzed. Do you mean that one doc couldn't feel it (T1c) while another could (T2b)? That's what happened in my case; I had a T1c staging from my local uro who did the biopsy and diagnosis, while the surgeon who eventually did the prostatectomy staged it as T2b.
My local uro sent off the core samples to a pathologist about an hour's drive from here (west-central NY). When I settled on my surgeon at Johns Hopkins, he insisted that I use a pathologist from JH, which was fine with me. The Gleason scores did change in my favor. So, I agree with Ron; get a second pathologist to take a look at those samples.
I was diagnosed in late July of 2007, and had my laparoscopic radical prostatectomy (LRP) in mid-November. My local uro all but advised me not to use him; that's why I shopped around a bit. Baltimore was a good choice for me, as I had in-laws to recuperate with, and Johns Hopkins has a very good team. Others will tell you good things about other places. If you have not done so already, it is very much worth your while to get a surgeon who does this procedure all the time -- more experience translates into lower risk of side effects. But you do have time to consider your options. October is probably not too long to wait. Prostate tumors are usually pretty slow-growing.
Whereabouts are you? I'm asking because a lot of us can recommend places for you to visit: hospitals, support groups, and such. If you're on the West coast, you probably won't think about JH or MSK or other places over on this side.
There's also a lot of reading you should do -- many of us recommend our favorite books. Here are mine:
The Prostate Book, by Peter Scardino The Prostate, by Patrick Walsh (get the latest edition) Prostate Cancer for Dummies, by Paul Lange
Others will post some web sites that are really good sources for you as well.
Good luck with this, El, and please keep us posted on your progress. I imagine that it all feels a little overwhelming now, but that will pass.
All the best,
charlie
 Signature 6/2006 PSA 5.2 DRE suspicious 7/2006 Biopsy 2 of 10 positive Gleason 7(3+4) 11/2006 LRP Clear margins 1/2007 PSA < 0.01 3/2007 PSA < 0.01 6/2007 PSA < 0.01 so far, so good
Heather - 21 Jul 2007 18:40 GMT From his headers, it looks like he is in Virginia. Using his NNTP Posting IP numbers.
Chas....fix your calendar. (G) You posted this 8 hours before he did. ESP?? Just kidding. Double click on the time in the lower right hand column and make sure your date is right for starters, then check the time zone.
Cheers......Heather
> Hello, El: > [quoted text clipped - 72 lines] > > charlie chasjac too - 21 Jul 2007 16:58 GMT > From his headers, it looks like he is in Virginia. Using his NNTP > Posting IP numbers. Then JH is not too far, but there are a lot of other choices, I'm sure.
> Chas....fix your calendar. (G) You posted this 8 hours before he did. > ESP?? Just kidding. Double click on the time in the lower right hand > column and make sure your date is right for starters, then check the > time zone. Thanks for pointing that out, Heather ... but there's something weird going on here. The time on my desktop is correct, and it's set to the correct time zone. I am not sure why the timestamp is exactly eight hours behind. When I tried to fix it just now, my system rebooted. I'll have to ask about it on the Debian NG.
--charlie
 Signature 6/2006 PSA 5.2 DRE suspicious 7/2006 Biopsy 2 of 10 positive Gleason 7(3+4) 11/2006 LRP Clear margins 1/2007 PSA < 0.01 3/2007 PSA < 0.01 6/2007 PSA < 0.01 so far, so good
El Woody - 23 Jul 2007 17:39 GMT > Hello, El: > [quoted text clipped - 62 lines] > 6/2007 PSA < 0.01 > so far, so good Thanks Charlie. Am in Philly and have really good access to JH, MSK, Penn, Jefferson docs. Fox Chase Cancer Center (where a former colleague had his RP in 2001) is a no go since their chief surgeon is out on medical leave.
As far as the staging, I probably have the second of the two wrong. Nobody has felt anything.
As far as the books, I have both Scardino's and Walsh's books.
ron - 21 Jul 2007 13:21 GMT > Newly diagnosed.... > [quoted text clipped - 11 lines] > > The doctors are of no help here at all. Hi EW...Studies indicate that for people with low-risk disease (e.g. T1c, GS=6, PSA<10), waiting a month or two generally (that's a probability statement) will not matter. In other words, the odds are on your side that waiting a month will not worsen the situation.
Your steadily rising PSA, high core involvement and low GS caught my eye. An accurate Gleason score is important in terms of treatment selection and outcome prediction. Have you had your biopsy samples read by someone who is expert in PCa pathology? If not, it might be something to consider. Such second readings are usually covered by insurance. If you search "pathology expert" within this newsgroup, you'll get some leads on names...Best wishes and good health, ron
El Woody - 21 Jul 2007 16:03 GMT > > Newly diagnosed.... > [quoted text clipped - 24 lines] > insurance. If you search "pathology expert" within this newsgroup, > you'll get some leads on names...Best wishes and good health, ron Thanks Ron. I will be having two surgeons look at the slides from the biopsy. My initial urologist characterizes this as a "high volume" tumor(s). Should I get a read from someone other than a surgical urologist?
ron - 21 Jul 2007 16:21 GMT > Thanks Ron. I will be having two surgeons look at the slides from the > biopsy. My initial urologist characterizes this as a "high volume" > tumor(s). Should I get a read from someone other than a surgical > urologist?- Hide quoted text - Apparently, grading PCa tumors is not all that easy, so to get an accurate assessment it often takes the trained eye of a pathologist who specializes in PCa. Usually, if you ask the uro who performed the biopsy, he will send the slides to whomever you request. Many on this list have had a second (expert) reading, and as I mentioned earlier, it is usually covered by insurance...ron
I.P. Freely - 21 Jul 2007 18:37 GMT > Should I get a read from someone other than a surgical > urologist? The Gold Standard Gleason grading lab was (is still?) Bostwick Labs (Google it). My local uro sends his cores straight to them routinely.
But would a 5 or a 7, even an 8, change anything? And if Bostwick found some 4s or 5s to give you a 7 or an 8 total, I'd bet your chosen highly experienced surgeons would work you in sooner if it alarmed them. I blew a solid 8 (4+4) my first time up to bat, but none of the half dozen oncologists I consulted worried about a couple of months; they just didn't want me waiting much longer. Although my Gleason 8 biopsy and rapidly rising 8.8 PSA did open a lot of doors and grease many skids for me, my ~10-week surgery delay alarmed no one.
I.P.
El Woody - 23 Jul 2007 17:47 GMT > > Should I get a read from someone other than a surgical > > urologist? [quoted text clipped - 12 lines] > > I.P. Thanks I.P. Am trying to balance my schedule with the doctors, with my wife's urge to "get rid of this now", with my reluctance to accept the fact that I have to have major surgery. I am sure that I can accelerate the process if the docs feel uncomfortable with waiting.
Alan Meyer - 23 Jul 2007 22:27 GMT > ... > Thanks I.P. Am trying to balance my schedule with the doctors, with > my wife's urge to "get rid of this now", with my reluctance to accept > the fact that I have to have major surgery. I am sure that I can > accelerate the process if the docs feel uncomfortable with waiting. I'm not knowledgeable enough to say whether waiting until October is okay or not. The surgeons may be offering you the earliest time they have available and that's just all they can do, whether it's best for you or not.
Personally, I think I'd be inclined to wait for the most expert surgeon. I have been told that all studies conclude that success rates for all medical procedures are higher with very experienced surgeons than for others. The guy who does one or two hundred prostatectomies a year has seen a lot, handled a lot of complications, and learned more about how to get that last bit of tumor tissue out. He (or she) is the one I'd want.
As for your reluctance to accept major surgery, at your age, I don't think you should delay. It is unusual to have PCa at age 44 and especially to have so much of it. It sounds to me like you are very likely to die of this disease if you don't get it treated. The treatment cannot get easier and the success rate cannot go up over time. I would bite the bullet now and hope for the best.
You might tell the surgeon you like best that you really want to do this thing and, if he has a cancellation, you would like to step in, even on very short notice. I would not worry about my schedule at all. I'd be prepared to cancel business trips, vacations, or whatever else you might have planned to get this done. Unless you're doing something that affects the future of the free world, I'd be prepared to cancel it and take care of your health first.
You might also start getting yourself in the best physical shape that you can. It may help you in the recovery period.
Best of luck to you.
Alan
A. Black - 26 Jul 2007 19:57 GMT > > > Newly diagnosed.... > [quoted text clipped - 29 lines] > tumor(s). Should I get a read from someone other than a surgical > urologist?- Hide quoted text - I don't think anyone can give a definitive answer regarding delay but here are the considerations. See these three abstracts on the topic of delay:
1. Treatment can be delayed for two years after diagnosis without affecting outcomes for small, low-grade prostate cancer defined as having a PSA density (PSA divided by prostate volume) below 0.15, no more than two biopsy cores involved with cancer, no biopsy core that showed more than 50 percent cancerous tissue and no high-grade cancer: http://www.hopkinsmedicine.org/Press_releases/2006/02_28_06.html http://jnci.oxfordjournals.org/cgi/content/full/98/5/355?ck=nck
2. Delay between biopsy and treatment does not have a large effect on risk of disease recurrence. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstra ct&list_uids=16353213&query_hl=17&itool=pubmed_docsum
3. Ditto: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstra ctPlus&list_uids=17483015&query_hl=1&itool=pubmed_DocSum
At the same time, nearly half of GS 6 patients wind up really being GS 7 and it sounds like they are going to treat you as a 7 regardless of what the pathologist says in which case a second opinion on the biopsy won't matter much. Also this makes it more important to get on with it. This paper discusses the upgrading phenomenon: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1 6890675&dopt=Abstract
The waiting time for different surgeons can be quite different and its not necessarily true that the experienced ones have longer waiting times so you could investigate further what is available to you.
At the same time the surgeon's experience is quite important. See: http://palpable-prostate.blogspot.com/2007/04/choosing-surgeon-part-i-considerat ions.html
Also you can really regard the surgery as up to three different operations at the same time. You need to
1. decide among open RP, freehand laparascopic and robotic. See this four part article: http://palpable-prostate.blogspot.com/2007/03/rp-vs-lrp-vs-rlrp-part-1-open-surg ery.html
2. consider what sort of Lymph Node Dissection procedure to have. This is quite a controversial topic: http://palpable-prostate.blogspot.com/2007/03/lymph-node-dissection.html
3. determine whether you need a concurrent hernia repair and if unknown whether the surgeon will determine whether there is existing subclinical trouble on the spot and repair it: http://palpable-prostate.blogspot.com/2007/02/inguinal-hernia-and-prostatectomy.html
Also there are surgical details that can vary from surgeon to surgeon. For example, one controversial area is whether to leave in the seminal vesicles: http://palpable-prostate.blogspot.com/2007/02/seminal-vesicle-ablation.html
By the way, I would start doing ED and incontinence exercises (these are two different sets) now since your state going into the operation will, in part, determine how fast you recover: http://www.men-and-health.info/science.html http://palpable-prostate.blogspot.com/2007/02/urinary-incontinence.html
and try to line up an ED specialist now for after the surgery.
Hope this helps.
--- The Palpable Prostate http://palpable-prostate.blogspot.com
Steve Jordan - 21 Jul 2007 18:52 GMT On July 21, Ron replied to "El Woody" in pertinent part:
> An accurate Gleason score is important in terms of treatment > selection and outcome prediction. Have you had your biopsy samples > read by someone who is expert in PCa pathology? If not, it might be > something to consider. Such second readings are usually covered by > insurance. Here is a list of expert labs:
Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162 David Grignon (Michigan) [313] 745-2520 Jon Oppenheimer (Tennessee) [888] 868-7522 UroCor, Inc. [800] 411-1839
The website of the Prostate Cancer Research Institute (PCRI) will prove very helpful: http://prostate-cancer.org/index.html Begin with the section "Newly Diagnosed."
The best book for study of prostate cancer (PCa) is: _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), Barnes & Noble, and bookstores. A lifesaver. I know.
There is work to be done to prepare to make an informed decision. Good luck.
Regards,
Steve J
"Empowerment: taking responsibility for and authority over one's own outcomes based on education and knowledge of the consequences and contingencies involved in one's own decisions. This focus provides the uplifting energy that can sustain in the face of crisis." --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled "The Empowered Patient's Guide."
Paul - 21 Jul 2007 16:27 GMT >Newly diagnosed.... > [quoted text clipped - 11 lines] > >The doctors are of no help here at all. Sorry to hear it. I'm going to be 6 weeks post op this Tuesday, so as you can see by the info in my sig, my biopsy was in March and the procedure was done in June.
After deciding on surgery, I opted for the RLRP mainly because of the minimally invasive incisions and low chance for a need of a blood transfusion. As of today, I feel I am doing very well at this early stage of recovery.
I told myself, the bad new was I was only 45 and that was way too young to be confronted with this. I told myself the good news was I was only 45 and in a position to beat what has hit almost every male ancestor in my family tree.
All I can recommend is read up on this, try and match the treatment with your situation and don't look back on your decisions. While I was extremely grateful of my local uro for having the wherewithal to insist on biopsying me, I was not comfortable with him as my surgeon and I picked a surgeon who I felt good with. By the time I did my perp walk to the OR suite, I was a free man!
Now I go from PSA test to PSA test hoping to stay free....
Best of luck to you.
 Signature PSA @ 45 yrs. = 4.7 02/06/2007 Biopsy 03/16/2007 G7(3+4),T2c RLRP 06/12/2007 G7(3+4),T2cN0M0 Neg margins PSA 7/16/2007 = <0.1
Steve Kramer - 22 Jul 2007 12:18 GMT > Newly diagnosed.... > [quoted text clipped - 11 lines] > > The doctors are of no help here at all. El Woody,
You have a goot set of numbers for surgery and your age pretty much pre-empts everything else. You can wait a month and your first task should be to find the best surgery within in your area or means. You should ask each one whom you investigate how many surgeries they do, how many nerve-sparing surgeries, and what their success rate is.
Since you have already determined surgery, I would recommend you immediately run out and get Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. The first edition was getting a little dated and I have not seen the second. But, he does a tremendous job in describing how to select a surgeon.
 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04 (06/12/2007) Non Illegitimi Carborundum
Slitheen - 22 Jul 2007 22:50 GMT > Newly diagnosed.... > [quoted text clipped - 11 lines] > > The doctors are of no help here at all. To complement the therapy your doctors have laid out for you, my Dad really believes that regularly taking Pomegranate extract tablets and drinking Pomegranate juice played some roll in his recovery (with his conventional radiation treatment, of course.)
His doctor too, one of the top Cancer specialists in the world famous Christies Hospital (A.K.A. Holt Radium Institute), certainly believes in complimenting traditional therapies with high dose antioxidants. They are believed by many to slow the development of the bad cells (and possibly prevent them growing for the undiagnosed). Although he is less than happy about those who rely solely on these kind of treatments....and I'm sure we can understand why.
But the research into the effects of antioxidants on cancer cells has been interesting to say the least. Especially the tests done on mice with prostate cancer cells. It was that experiment that led my dad to try them. His doctor described his recovery, and his consistent negligible PSA scores for two years since, as "quite remarkable". How much of that was due to his complimenting his 'traditional' therapy with antioxidants we just don't know......but what can you lose trying? A few measly quid?
Best of luck with whatever treatment you have though, and I wish you a speedy, full recovery!
Slitheen - 22 Jul 2007 23:03 GMT Oops, meant to post at least one link to a report on one of the few trials done. Actually, this one is one I had never heard of.....my dad's cancer scare was way before this trial. We had only heard of the mice trial when we decided to try Pomegranate juice/extract. This specifically mentions their help is preventing the return of the cells after radiotherapy. (My Dad still takes juice/tabs daily - (0.01 PSA scores for 18 months now...thank goodness)
http://www.webmd.com/content/Article/106/108151.htm
Like I say though, best of luck whatever you or your doctors do. :)
El Woody - 23 Jul 2007 17:51 GMT On Jul 22, 5:50 pm, "Slitheen" <slithee...@dropspamgooglemail.com> wrote:
> > Newly diagnosed.... > [quoted text clipped - 37 lines] > > - Show quoted text - I can afford the quid. Also trying to eliminate animal fats from the diet. This is tough since I don't need to do this for cardio health reasons and I love beef!
I.P. Freely - 25 Jul 2007 00:08 GMT > trying to eliminate animal fats from the > diet. This is tough since I don't need to do this for cardio health > reasons and I love beef! Don't get TOO hung up on animal fat elimination . . . er . . . avoidance. As you know, cold-water fish fat is very healthy for us. And very lean beef has about the same fat content as white chicken meat, and lean pork is trending that direction. Most nutritionists believe we need some sat fat in our diet.
But let me ask you this, as I'd like to know for myself to help me convince me and my doc that I don't need a statin for my borderline cholesterol: How do you know your cardiovascular system is healthy? Exercise stress tests miss many cases of atherosclerosis, homocysteine level implications are not clear yet, half of heart attack patients have great lipids profiles, and red meat has nutrients hard to obtain elsewhere. I haven't eaten a serving of bacon or a rib in 20 years, but I had a great slab of lean roast beef with breakfast today with a clear conscience.
I.P.
El Woody - 25 Jul 2007 19:20 GMT > > trying to eliminate animal fats from the > > diet. This is tough since I don't need to do this for cardio health [quoted text clipped - 17 lines] > > I.P. I am 5'9", 205 lbs, until last week ate 2-3 servings of red meat per day (Including Philly Cheesesteaks - about 6000 calories with most of that fat). My total cholesterol is always in the 113-123 range with very favorable HDL/LDL ratios and great triglicerides. My 67 y.o. dad has an even worse diet, does no appreciable exersize and has the same lipid profile. It seems to be genetic.
However, I would like to shave off some pounds to allow me to climb moutains faster on my bike (I ride about 2000 miles a season) and to eliminate the worry about inflamation and cardiac disease. The Pca diagnoses and the need to "pre-hab" has given me a kick in the rear to make diet and lifestyle changes that will ensure good health in the long run and not get dropped as quickly when the roads get steep.
It is very hard here in the states, particularly when you get more than 50 miles from the coast, to eat healty. Fast food is uniformly bad. The summer is nice since you can find pretty good fresh veggies for a price.
What is a homocystine level? I have a troublingly high CRP level on my bloodwork.
I.P. Freely - 25 Jul 2007 23:25 GMT > I am 5'9", 205 lbs, until last week ate 2-3 servings of red meat per > day (Including Philly Cheesesteaks - about 6000 calories with most of > that fat). My total cholesterol is always in the 113-123 range with > very favorable HDL/LDL ratios and great triglicerides. My 67 y.o. dad > has an even worse diet, does no appreciable exersize and has the same > lipid profile. It seems to be genetic. My chol is also genetic, but in the other direction: borderline high no matter what I eat or do (unless you count statins, the only way I had found to improve my chol.) But since I've always been lean and fit, I wasn't worried much about weight or diet until the medical and statistical professions concurred overwhelmingly a couple of decades ago that sat fats kill (and they recently concurred with my years-old warning that trans fats are even worse). I dropped my sat fats intake by something like 95% in the 1980s (I could afford to: I ate steak by the pound, whole milk by the gallon, pastries by the tray, ice cream by the quart . . . and burned it all off.)
> However, I would like to shave off some pounds to allow me to climb > moutains faster on my bike (I ride about 2000 miles a season) and to > eliminate the worry about inflamation and cardiac disease. The Pca > diagnoses and the need to "pre-hab" has given me a kick in the rear to > make diet and lifestyle changes that will ensure good health in the > long run and not get dropped as quickly when the roads get steep. I keyed in one one word in that paragraph: "inflammation". That's your CRP (it should be < 1.0, as you know). Elevated CRP is a better marker than cholesterol or lipids in general for heightened cardiovascular risk, especially for athletes who manage to keep their chol down with aerobics.
> I have a troublingly high CRP level on my bloodwork. I'd hit that hard on Google and with my doctor. It's much more alarming than anything but a whole litany of extreme cholesterol numbers, because inflammation causes the plaque that ultimately leads to arterial blockage. Many physicians believe statin's benefit is its anti-inflammatory effect, not its cholesterol effects.
> It is very hard here in the states, particularly when you get more > than 50 miles from the coast, to eat healty. Fast food is uniformly > bad. That also applies regionally, between areas mutually far from a coast. I moved between interior states and noticed a big difference in the availability of low-fat foods in the stores and restaurants. But I eat in restaurants only rarely, and usually eat fish and veggies there anyway, with sauces and butter on the side. I don't eat in fast food joints more than a couple of carefully chosen joints and meals a year. I plan on dying of prostate cancer, not something I actually have some control over like heart disease.
> The summer is nice since you can find pretty good fresh veggies > for a price. Frozen and canned produce is usually more nutritious than "fresh", because a) it's packaged at its peak and b) much "fresh" produce was picked green, artificially preserved, artificially "ripened", shipped thousands of miles, and sold in supermarkets and even roadside stands as "fresh". The "fresh" strawberries I ate yesterday came from Australia.
> What is a homocystine level? It's yet another blood component recognized as a cardiovascular disease marker, so far less well defined and studied than CRP. Google it for an eyeful (homocysteine). It should run in single digits, and like CRP, is surpassing lipids as a coronary risk marker.
I.P.
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