New PC Victim with Questions

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Nebraska Guy
New Member


Date Joined Aug 2009
Total Posts : 11
   Posted 8/6/2009 3:40 PM (GMT -6)   

Like most newly diagnosed with PC, I’ve been trying to decide on a treatment.  So far I talked to my urologist and a radiation oncologist who he recommended.  I also done a lot of research, got recommendations from friends and recently joined a local support group.  As of now I haven’t decide on a treatment.  It’s a PC treatment jungle out there with lots of dubious choices.  None are appealing.  Due to the early detection of my PC, my urologist said I could take my time to decide and get treated.  I plan to be treated this fall after my previously schedule vacation. 

My urologist discussed treatment choices and recommended robotic surgery which he would perform.    He stated that he believes in his abilities and was biased towards surgery.  However, he encouraged me to get more opinions.  He said that surgery has about an 80% cure rate versus 75% for radiation.  As for side effects he said there was 5% chance of permanent incontinence and 33% change of permanent ED.   Are these probabilities reasonable? I’ve seen other claims and find that there is no hard data on this.

My urologist has done over 100 robotic surgery prostatectomies.  He has a partner who has done over 300.  In addition, I’ve received a few other independent recommendations for this partner.  I also received recommendations for three out of town doctors:  Ash Tewari Professor of Urology Cornell University, Tom Ahlering Professor & Vice Chairman of Urology University of California Irvine and Greg Zagaja, M.D. Associate Professor of Urology University of Chicago.  I appreciate and opinions on these choices and insight on selecting a surgeon if I decide to go that route.

The radiation oncologist I consulted with partners with my urologist to perform brachytherapy.  At my local PC support group I met a member who had brachytherapy from these doctors and had good things to say.  Anyway, the radiation oncologist stated that there are no rigorous scientific studies that prove any PA treatment is superior.  He said that surgery or radiation (beam or seeds) would work equally well for me.  He said that he personally wouldn’t have surgery.  He had one strong recommendation which was that I should be treated.  I understand there is about a 50% long term ED rate from radiation.  I would appreciate any comments on the above?

As of now I’m leaning towards robotic surgery with brachytherapy a strong second choice.  If I go the surgery route I have to choose a doctor.  I don’t feel real confident about doing this.  I’d appreciate any words of wisdom.

I realize that the superior surgeons probably are located outside of my home city (Omaha).  However, I’m not enthusiastic about traveling out of town for surgery.  I imagine that I would have to hang around until they remove the catheter which is over a week.  It would be nice to be at home during this time. I also wonder how much travel I would have to do for follow up doctor visits.  I would hope that any follow up could be handled by my existing urologist.  I like to hear about experiences with travel for surgery.

Here’s some more information about my PC.  My first PSA result at age 50 was high.  about two years ago I had my first biopsy and one core was found with atypia.  Also, my prostate was found to be enlarged and I started taking Avodart.  My father also has and enlarge prostate with no PC.  Due to a rising PSA I had my second and latest biopsy.  My maternal grandfather and his father died of PC.

Thanks for reading this and sorry for the long post.

George

 

 

 


05/09: Diagnosed (age 53) biopsy PSA 4.5, T1c stage, Gleason 6 (3+3), 3 of 12 cores.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 8/6/2009 4:11 PM (GMT -6)   
George ,
You're right. It is a jungle out there. The surgeons recommend surgery. The Rad Oncs recommend Rad, the GP recommend waiting. As you can see from my signature I was diagnosed about the same time as you. My PSA was much higher as was my "staging" and biopsy figures. I decided myself to go with da Vinci after listening to a couple of OR nurses and listening to their comments about certain doctors. I wisely avoided the one they call "The Sanguinator".
I am a healthy guy: 5' 8" 150 pounds, solid build, not too much body fat--a poster child for surgery. I figured I can take the surgery and will heal quickly. I considered that radiation would be a back up choice if the surgery does not work. One thing I did not do was wait. I figured that junk needed to come out now! It will never be easier. I will never be healthier, the PC will never be smaller, I'll never be younger. OK, maybe I would have waited if I had an appointment with the President or had to do a big presentation. Since Obama was busy and work was not the decision was clear.
I go with the Git 'Er Done approach.
You found a great bunch of guys here. Their sage advice and humor has helped me a lot.
Good Luck,
Jeff
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and Pathology report received
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 8/6/2009 4:15 PM (GMT -6)   
Welcome Nebraska guy,

Sorry to hear that you had to join this club, but seeing that you have...a big Welcome to you.

The advice you have been given so far is pretty much right on. I would only say that the side effect percentages seem to run the gambit from what I have read here on this forum. It seems that each of us are different, with most healing from the side effects during the first year after going the surgery route. I was surgery, so I can't comment on the seeding route, but some folks with a very high knowledge concerning seeds will chime in.

There really isn't one form of treatment that is better than another in terms of outcome which is getting rid of the cancer. I chose the surgery route because I wanted to get a final pathology of my tumor and to get the best chance of knowing if I would be free from the disease. However, I was one of the few that will have to deal with the disease again in a few more months. Going the radiation route is very successful however with low grade tumors and low PSA as yours is.

I don't think you will go wrong with either route, but make sure that you get the best experience surgeon or radiologist you can find. Everyone here will tell you your best shot for a cure and minimal side effects will be the skill of the doctor. So that is the best advise I can give you at this point.

Good luck in your decision process....we all know how that can really stress a person out with all the information overload you will get.

Take care and welcome again,
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/6/2009 4:32 PM (GMT -6)   
Welcome to our world, George

Sounds like you are doing all the right things in educating yourself about your options. While your biopsy gleason is a 6, the fact that you had 3 positive cores concern me. As stated elsewhere, the biopsy is like getting an estimate, where there is a certain gamble, is that if you have surgery and when they do the post surgery pathology, its not uncommon to have the gleason score upgraded and the amount of cancer found increased. Its rarer that it is downgraded, though that happens too. And of course, sometimes it stays the same as the biopsy projected. Thats a risk that you alone will have to contemplate.

And then of course, there is the classic argument of which is better first as a primary treatment, surgery or radiation? As a general rule, if you do surgery first, and later have a reaccurance, then you have a clear option of radiation as a secondary treatment. If you do radiation first, and it fails, surgery is almost always out of the question. Even if you found a surgeon that would do it, the failure rate is high.

With a true low grade dose of PC, I have no problems with the radiation or the seed radiation as a primary treatment. In my case, I had rapid PSA veolocity (something to really pay attention too), and a biopsy gleason of 4+3, my personal gamble was that the cancer was still contained in the prostate. In my case, the jury is still out.

Please keep us posted of your personal journey, this is the most caring place on the web I know of for this kind of support. Thanks for joining us.

David in the Palmetto State of South Carolina
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4157
   Posted 8/6/2009 5:07 PM (GMT -6)   

Dear Nebraska Guy:

Shown below are comments I recently posted for another patient who was trying to make a choice.  I think this is equally valid for you.

First of all, I’m sorry you have to be here but I will tell you that you have found a good place for both information and support.  I am one of the few brachytherapy patients that post on this forum.  You will get lots of good advice from the surgery guys…some of it balanced, some of it clearly pro-surgery.  And you will get what I hope will be balanced advice from me, but it probably will also be a little skewed with a pro-radiation bias.  So, I’ll try to be a little bit organized and provide you with some advice from my perspective.

General

First of all, with early stage cancer you have time to research the heck out of your alternatives so you can feel comfortable that you are making an informed decision.  If you haven’t bought it yet, I advise you read “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer”.  It’s not perfect, by any means, but is an excellent primer.  Secondly, both of the options you are considering will most likely cure you.  There are multiple long term studies for surgery and brachytherapy that indicate they provide basically the same cure rate for early stage cancer patients.  Of course, each man is different and I suggest you plug your stats into some of the predictors available to see where you fall.

You should also make sure you consult at least three EXPERIENCED doctors to gather your options.  They are your uro-doc surgeon, a radiation oncologist and a prostate oncologist.  Many of the major cancer centers, e.g. Johns Hopkins, Duke, MSK, M.D. Anderson, etc., can provide those three in a multi-disciplinary team setting.  Otherwise, you can and should still do it on your own.  I highlighted “experienced” because there are definitive studies that demonstrate better outcomes if your practitioner has done 250+ procedures…let them learn on someone else. 

You also might consider getting a color doppler biopsy to assist with your baseline.  I didn’t even know such a thing existed but would have gotten one if I had known about them.  The bottom line is to make sure you are totally comfortable with the decision.  This is huge and they are messing with pretty important real estate!

Surgery

As I said, you will likely get lots of advice here from the experienced surgery guys.  The two choices I looked at were robotic and open.  Robotic is newer but there are plenty of experienced guys now who can do it.  I would have chosen robotic if I had chosen surgery.  With surgery you get the aforementioned likelihood of cure, the immediate post-procedure knowledge of the pathology of your cancer and the psychological advantage of “having it out”, that is very important to some men (it was not to me). 

But surgery is invasive, even the robotic kind.  You have the inherent risks of major surgery, a catheter for some period of time (a week to months) and some time needed to recover from the operation.  You also almost certainly will experience incontinence – typically improving over a period of months.  You will most likely experience ED.  That improves over time for most men, especially with the help of Viagra, Levitra or Cialis.  There is some clear evidence that ED is psychological as well as physical.  In other words, once you lose the ability to have erections, it’s tough to get them back because you are trying so hard to make it happen.

The things that some surgery docs don’t tell you are that you lose your ejaculate, your penis make get shorter and many men ejaculate urine.

One advantage of surgery that many surgery patients cite is the fact that, if the cancer recurs, you have salvage radiation as an option for further treatment.  I personally find this a rather specious argument, since the cure rate from this "broad beam" radiation treatment is quite low and further treatment is likely to be required anyway.

Brachytherapy

This was my choice and, 8 months out, I’m glad I made it.  I’ll let you know in 20 years if I’m still glad!  You can read my “story” if you click the link at the bottom of my signature.

A typical poster-boy candidate for brachytherapy will have Gleason 6 or less, a prostate size of 50cc or smaller, Stage T1-T2, and PSA less than 10.  With G-7, brachytherapy alone may also be used if all of the other criteria are met plus cancer found in only a few cores and with a small %.  Otherwise, the doc will typically use HT to lower the prostate size and/or supplement the brachytherapy with a 4-5 week course of external beam radiation therapy.

Brachytherapy as a procedure is pretty non-invasive and is typically done on an outpatient basis.  There is very little pain involved and the patient pretty much returns to normal activities within 48 hours.  Besides the aforementioned curative power of seeds, the urinary effects are much different than surgery.  There is rarely any incontinence, but a patient may experience some frequency and/or urgency during the first couple of months.  Most docs put men on Flomax for 3 months to assure normal urinary activity.  Pre-procedure, most patients take a written test about their urinary activities.  If things are pretty normal pre-procedure, they are more likely to be normal post. 

The same can be said for ED in brachytherapy patients.  A patient performing well before seeding is more likely to perform well afterward.  In any case, most of the “performing” patients return to sexual activity within a couple of weeks of the procedure.  However, if and when ED occurs in brachytherapy patients, it is likely to be a couple of years down the road.  If that happens, the same little blue pills that help surgery guys will likely do the trick for seed guys.  In general, brachytherapy patients show somewhat less ED than do surgery patients when normalized for age, diagnosis, etc.

While “radiation after surgery” is generally available (but not highly successful) if the cancer returns for surgery patients, “surgery after radiation” is not usually an option for brachy patients.  There are only a few docs who will do salvage surgery after radiation and personally, I would not recommend it.  So, if cancer returns to a brachytherapy patient, the options are likely to be hormone therapy, cryosurgery, re-seeding or maybe even HIFU.

This got a little long, but I hope it helps.  Best of luck to you; please let us know how you progress.

Tudpock

 



Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 7/1/09.  6 month PSA now at 1.4 and my docs are "delighted"!
Tudpock's Brachytherapy Journey: http://www.healingwell.com/community/default.aspx?f=35&m=1305643

Post Edited (Tudpock18) : 8/8/2009 6:50:40 AM (GMT-6)


Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 8/6/2009 5:13 PM (GMT -6)   
The benefit of surgery is you get the results from the final path report. I am under the impression that in the end, the side effects come out about the equal (not sure if that is the same with proton treatment), although with surgery it's based more on the skill of your surgeon. In addition, there might be a bias towards surgery as if there is a local recurrence, you still have the radiation route.

The 75%, 80% stats you cited, remember is based on all prostate cancer grades. The Sloan Kettering nomograms indicate much better outcomes, if you observe it, surgery appears to have an advantage according to the nomograms, and historical nomogram.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 8/6/2009 5:51 PM (GMT -6)   
The advice you are getting here is right on. You can see how everyone is different -just like our 401k investment choices. That said, I just opened the Sept/Oct issue of AARP and there was an article about PC and treatment options. They also have online resources that might be useful.
Since I've already been to the Vet, just like my dog, I don't have to worry about my choices any more.
Here is the link http://www.aarpmagazine.org/health/
Jeff in NY
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and Pathology report received
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 8/6/2009 6:49 PM (GMT -6)   
Hi George,

My Gleason, like yours, was 3+3 but I had four of 12 cores positive, three on one side, one on the other. At that point a Cincinatti cousin, who also happens to be a urologist/surgeon/oncologist (MD Anderson trained) told me: "You could die of this ---- but, you'd really have to work at it!" It was his way of telling me Gleason 6 wasn't bad news at all.

He asked me to do two things: One was to get the slides re-read. The other was to investigate HIFU, which is an approved therapy here in Canada. I thought of HIFU as being like watchful waiting, but with the kicker of "cooking" the prostate and killing the cancer cells --- at least some of them, and what you'll discover is that no matter what threapy you decide on some cells may escape, or have already escaped undetected, and may come back to haunt you.

I was very attracted to HIFU and settled on Dr. Bill Orovan in Toronto as he'd done some 400 of these. As they are done on an outpatient basis, and short term ( 5 to 10 year results) seem to be as good or better than surgery (long term results aren't available as it's only been around for about 10 years) it has it's attractions. Another thing you'll learn is that every treatment has it's risks, and HIFU is no exception.

However, before I signed up for HIFU the second pathology reading came back at 3 + 4 ---- a seven. My cousin, and a friend who is a urologist surgeon at Mayo, said, "that's it! If you might be a seven, go for the surgery. Get it out."

The HIFU people said Gleason 6 or 7 didn't make a difference to the validity of choice between surgery or HIFU, but if I wanted to do surgery that's what I should do. I decided on the surgery because I knew my personality type wouldn't be happy not having the pathology after treatment, and with HIFU there's no prostate to look at.

On June 29 I donated my prostate to medical science courtest of the daVinci robot and the pathology agreed I was Gleason 7. I also know the cancer was all contained in the prostate, the nodes were clear, and I have a 90 to 95% chance I'm cured. I'm glad I have the pathology. If I was 8 I wanted to know that.

From all of the above, I'd encourage you to get your slides re-read by a second top pathologist. The two pathologists I had read my slides were both top rated experienced prostate tissue guys. The second guy made a different call than the first and that altered my treatment choice.

When I had the surgery I elected to go to a city a two hour air flight from home to get the surgeon and the team I wanted. It wasn't easy to do this so far from home, but if I had it to do over again I'd go in a heart beat. First, even before they gave me the happy drugs as I went to the hospital that morning I was totally calm and I'd slept like a log the night before confident I was doing the right thing, with the right surgeon, with the right team in the right hospital. Then, afterwards, when I was discharged the next afternoon, I went back to the hotel, just up the street from the hospital, and found that to be the perfect place to recover. Clean sheets and towels every day, room service, and elevator, a coffee shop, a news stand, I got my hair cut, I went for walks outside in interesting places and a real bonus was that as I learned to cope with the catheter and pain meds I didn't have office friends, and relatives showing up to entertain. What a blessed relief that was. I was eviscerated on Monday and was ready to fly home on Thursday, but we were having such a nice rest in the hotel we stayed on until Sunday. To my surprise I found being away from home a big bonus.

Good luck and keep us posted on your journey.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"  


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/6/2009 7:09 PM (GMT -6)   
George, I am new on this board but have been doing my research on PC for the last six weeks. I got the call about the biopsy 3 days after my wife went into the hospital. She came home today after 7 weeks.

So for the last six weeks I have been looking for the info the same as you.

The Dr.s you mention all seem to have great reputations. When I researched Tewari I found that he had studied under and worked with Dr. Menon of the Vattikuti Institute at the Henry Ford Medical Center in Detroit.

I met the man yesterday. Took a 2 day trip up there from Orlando to interview his team for a possible choice for surgery. He personally has done over 3000 da Vinci operations. He was on the team that developed the da Vinci in the first place. Prior to the da Vinci he had done over 1250 prostate surgeries.

He and his team have developed and fine tuned surgical procedures that have gone a long way to lesson or eliminate the issues of ED and incontinence.

In my own life these issues were far more important than just getting the cancer out. I am confident that mine is confined to the prostate and taking the darn thing out will get it out of me. I am 60 years old and my wife is 52. Quality if life is extremely important to us. My wife is a cancer patient, Multiple Myeloma and has undergone high dose chem and stem cell transplant. Her cancer is not curable. You only hope to do the things you can to put it into remission for as long as you can and hope that when it comes back there have been new developments that help you put the thing back in the can for a while longer.

Everybody has their own favorite and no one is right for everyone (just like our wives).

I agree with the comments that if you go the surgery route the back-up is radiation. It is not so easy the other way around.

Talk to the Dr.s and ask the tough questions about quality of life and not just life itself. Ask them for their own personal statistics that back up their claims. They all should be keeping records and follow-ups with their patients for at least five years or more. Dr. Menon has the stats for the last 4500 surgeries that his group has done. They are quite impressive.

I am not trying to sell Dr. Menon here, but I truly feel he is the Gold Standard by which the others must be able to measure up against.

Good luck to you and your family. My wife and I will add your family to our prayers.

Sonny
60 years old
PSA November 2007 3.0
PSA May 2009 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

Surgery set for September 2009 with Dr. Mani Menon at the Henry Ford Medical Center in Detroit.


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 8/6/2009 7:36 PM (GMT -6)   
George,
As you can see from my signature below, I didn't have the option of seed implants. My urologist suggested surgery so I can use radiation as a second bullet if I have a recurrence. My robotic surgery was a breeze. One day in the hospital, catheter removed after one week, walking 4 miles one week after catheter removal and continence after 4 months. As far as ED, that depends on your surgeon and his or her ability of preserving your nerve bundles. If you do decide on robotic surgery, make sure you pick someone who has performed 500+ of them. My doctor has done over 1000. Take your time in deciding. Good luck.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/6/2009 8:01 PM (GMT -6)   
I would say take your time. Based on your Gleason and PSA, be sure you do something you won't feelbad about later. Incontinence and ED are potential problems for both surgery and radiation, its just the timing that is different .

Moat of us surgery guys have felt a little bad at first. I thought incontinence was a little dribble in my pants once in a while. When the doctor pulled thst catheter, I truly was surprised. Soaking through 8 or 10 pads a day was a shocker. The ED I understood a little bit what it meant, but didin't have any ideas how much I would miss it, or how bad I would feel not being the "man" with my wife. Both things most of us have adjusted to.

I am glad I made my decsion, and wouldn't do anything different.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/6/2009 8:09 PM (GMT -6)   
Nebraska
First of all welcome to the club that we hate to have anyone join. The basic problem with prostate cancer is that there are several good choices. And there is time to make them. If you look at the top of the list of threads you will find one with lots of resources including the suggestion of several books. It is very much worth investigating these. Lots of times we are used to doctors offering a single choice, but PC requires that you make the choice. As you can see from my sig below, I am a surgery guy -- I figured that I wanted to face any side effect up front raqther than waiting to see if they developed. On the other hand, my younger brother chose radioactive seeds five years ago and reports that any problem he has is taken care of by Viagra.

Any way, by now we have probably swamped you with options, but I urge you to carry on. Read and educate yourself, consider what is important to you. Whatever you decide or whatever you want to ask, we are here. Not to tell you, but to help and support you.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/6/2009 9:41 PM (GMT -6)   
Hi George,

Welcome to a great site. I believe this is the best site for support for any stage of the PCa diagnosis and treatment. There are a lot of good folks here.

You have very good numbers to be a candidate for what many doctors still call the "gold standard" treatment, which is surgery. As others have said, you want to do more study on treatments. If you do choose surgery, find a good one with much experience.

I chose surgery because I wanted that cancerous prostate out of my body altogether. In addition, I wanted to have the comprehensive pathology that only comes with surgery to really know what I was dealing with in terms of the aggressiveness, containment, and extent of the cancer. In fact, my actual volume of cancer was downgraded after the surgery compared to the biopsy estimate.

I still have some challenges ahead because my post-surgery numbers are not a perfect zero, yet I would have chosen surgery again since I believe surgery with the option of follow-up radiation for less aggressive and contained cancer is a good way to go.

I had the robotic surgery and it was very easy for me.

I wish you the best in your decision. No one here will second guess your treatment decision. It is your life.

All the best,

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 8/7/2009 6:26 AM (GMT -6)   
George,
You are probably all ready finding how valuable this site is. Just look at all the posts and thoughts given to you! I will second the idea if you go with ROBOTIC to find a surgeon with as many procedures as possible. It has a high learning curve and I've heard many Doctors that perform the robotic state that they improve with more procedures and have better outcomes with the cancer control. 100 or 200 may sound high to you but I don't think I would want someone with under 500. My Doctor (having the surgery next week) has done 2,700 with the robot. To me experience COUNTS!!!!

Remember though as you travel down this road the main goal is to GET RID OF THE CANCER. Good luck on your search as to what will be right for you.
Larry
Age at diagnosis 54, PSA 5.1
Father treated for Prostate Cancer in 1997 with Proton
Biopsy 04/08 12 cores, 5 positive
Gleason 3 Cores at 4+3=7
              2 Cores at 3+4=7
Perineural Invasion Noted on biopsy

Robotic surgery Scheduled 08/12/09 at Vanderbilt, Nashville TN. 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/7/2009 7:28 AM (GMT -6)   
Experience, real time, is the key if you go with surgery. I think all of us surgery men would agree with that statement. Your own doctor might be a great surgeon, but that is a low number of robotics under his belt. If you have the resources and the ability to go out further, a much higher experienced surgeon might be the safer bet.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 8/7/2009 7:59 AM (GMT -6)   
I have nothing to add to the great advice in all previous posts, so I will address an issue of out of town surgery. As you can see from my signature, I chose to have surgery at Duke. I flew in the night before with my wife. Stayed two days in hospital and another couple of days in the hotel. Then we went home. My doc wanted the catheter to be in place for two weeks. I then went to local doc to remove it. I had a phone follow up regarding the pathology results. I did see him again about six months after surgery, but it was not really necessary - I just was in town. So, out of town surgery is very much possible logistically. The added expense is airfare and hotel (many hospitals have discounts at local hotels). The skill of the surgent is the most important variable in the success rate.

Best of luck,

Greg

Father died from poorly differentiated PCa @ 78 - normal PSA and DRE

5 biopsies over 4 years negative while PSA going from 3.8 to 28

Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere+Avastin)

PSA prior to treatment on 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60

RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins

PSA undetectable for 8 months, then 2/6/2009-0.10, 4/26/2009-0.17, 5/22/2009-0.20, 6/11/2009-0.27

Salvage IMRT + 6 Months ADT: Casodex started 6/12/2009, Lupron 6/22/2009, PSA 6/25/2009-0.1, T=516, 7/23/2009-<0.05, T<10, IMRT to start mid-Aug


channelsurferdude
New Member


Date Joined Jul 2009
Total Posts : 9
   Posted 8/7/2009 8:44 AM (GMT -6)   
You are doing the right thing by researching. Much has been said about surgery and radiation, but do yourself a favor by researching Proton Beam Therapy. I have similar numbers as you, and after countless hours of research, I changed my mind 3 times as to which treatment was best for me. It's true that doctors will steer you to their specialty, and patients will recommend the treatment they like. If I had a Toyota and it was a good car, I would tell you that. Please do more research and at least look at other modalities. You might find that Proton or HIFU or Active Surveillance is the best option for you. Good luck in your decision.

CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 8/7/2009 8:49 AM (GMT -6)   
Greetings, George.  Welcome to the club that no one really wants to be a member of.  You have not only found a site with a wealth of information, you have also found friends who have been right where you are, experienced the same emotions and come to some of the same decisions that you are having to make.  There are lots of opinions and nearly all of us think we made the right decision and I really believe that is true.  Different circumstances warrant different decisions. 
 
When my regular uro doc who performed my biopsy gave me the news that I had cancer, he immediately said I would now have to see someone else because he didn't treat prostate cancer.  What that said to me was any advice he gave me was going to be unbiased and something I should listen to. His first words were "at your age my recommendation is you should only consider one option and that is surgery."  He also said, I had lots of time to make a good decision.  He gave me a book and based on that book I went out and bought 2 more books.  I became convinced that surgery was the best option for me.  Now the choice was robotic or open.  I asked my uro doc for a recommendation and he referred me to the doc he said he would go to if he ever needed surgery.  I got an appointment and this surgeon spent about an hour with my wife and me. 
 
He said he really believed robotic surgery was the wave of the future and 5 - 10 years from now nearly all the surgery's would be robotic.  However, he still did open because he liked to get in and both feel and see what the situation was in the entire area.  He confirmed that he did about 250 a year (3 on Monday and 3 on Wednesday most weeks of the year) and had been for 20 years.  I'm not too good with math but that is a lot surgeries.  Like most of the surgery guys here on the board have said, the skill of your surgeon is the most important factor and the way you get that skill is by doing lots and lots of them. 
 
I was impressed that he said I should expect to have issues with incontinence and impotency.  However, he tracked both of these with his patients and at the 2 year point 90% of his patients were continent and 92% of those who could get an erection prior to surgery could get an erection post surgery.  He also told me that most of his patients took an ED drug and that I should be prepared for that. 
 
In short, I came to have great confidence in him - his abilities and the rapport he had established with my wife and I.  At that point, I wanted him to do my surgery so I opted for the open surgery. 
 
Just a couple of other points.  As others have said if you have surgery and it is not all contained, you can have salvage radiation.  It does not work the other way around.  Also, if you have the surgery you know whether there were any margins or if there was a likelihood that any cells had escaped - its not perfect but you get a very good idea of what your status is.  Also, I happened to be one of those that was upgraded post surgery from 3 + 3 to 4 +3 which is a more aggressive cancer.  Just confirmed for me I had made the right decision to get it out of there. 
 
Lots of information here and I realy believe it is all valid. Different guys need different options.  The trick is to find what is best for you.  Find your doc, make your decision, and don't look back. 
 
One final thought - make your wife a part of this process.  She is directly affected and will end up being your biggest supporter and will provide your greatest therapy.  Please keep us posted on how things are going. David
p.s.  I spent some time in Omaha - my daughter was born there - I was at SAC HQ at Offutt. 
Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4157
   Posted 8/7/2009 2:27 PM (GMT -6)   
George:
 
In a continued attempt to bring you some balance for your decision, I have provided a link to some FAQ's from the Dattoli Institute...well known for their radiation success. 
 
 
Additionally, may I respectfully suggest that you take a hard look at the many threads on this forum concerning issues facing post-surgery patients as you evaluate the importance of quality of life in your decision.
 
Tudpock
Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 7/1/09.  6 month PSA now at 1.4 and my docs are "delighted"!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/7/2009 2:39 PM (GMT -6)   
Tud, knew we could count on you to bring plenty of good info to the table
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4229
   Posted 8/7/2009 8:30 PM (GMT -6)   

George,

I can't add a lot to Tud's advice; but with a G6 and a PSA of 4 just about any local treatment will produce the same result, the only difference is in the side affects. If the PC is non agressive and contained within the prostate, either surgery or seeds or radiation or HUIF will get it over 90% of the time. You seem to fall in this low risk catagory.

I had seeds a couple of months ago, no pain, only issue was urinary frequency for about 4 weeks that did not interfere with any daily activities from day 1. I have never heard of a surgery patient golfing the next day.

I just don't buy into salvage radiation as a 2nd chance for surgery. It is only effective in about 30% of the cases because the PC is usually already outside the prostate area. If the PC is still in the Prostate area it is because there was a positive margin or there were PC cells left in the prostate tissue left behind in surgery. Even the best surgeons leave some prostate tissue, the poor ones leave a lot.

Good luck in any decision you make.

JohnT


64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DX BPH and continue to get biopsies yearly. Positive Biopsy in 10-08, 2 cores of 25, G6 less than 5%. Scheduled Surgery as recommended.

2nd Opinion from Dr Sholtz, an Oncologist said DX wrong, path shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G 4+3 approx 2.5cm diameter.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and burining urination. Daily activities resumed day after implants.

Scheduled for 5 weeks IMRT in July

JohnT


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/7/2009 9:28 PM (GMT -6)   
JohnT,

I would agree that salvage is not the endall, but if any of us surgey types do get to the point of reoccurence, we do have at least one more step to try. Squirm on another post gave a formula that showed how 2 appraoaches, such as surgery and radiation givesw us a 5 % percent better chance of non-reoccurence. It's not enough to make me want to do adjuvant radiation, but certainly enough to make me interested in trying if my PSA does start to rise.

Having the surgery tells us exactly how much we should watch our PSA, and when to jump into action if we do see a rise. With radiation, the patient may not know he had an EPE, or a compromised margin, so 6 month and then annual PSA's are follwed.

Beacuse I did have an EPE, I am staying on a 3 month schedule for a long time.

If your PSA starts to rise, what is the fallback. HT or chemo ?

I am really trying to explain how I logiced out surgery, not argue or put down other approaches. I am still learning !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 8/8/2009 12:49 AM (GMT -6)   
Hi George I was in the same position as you a few months ago I found this site and asked the same questions that you have asked I would like to tell you my reasons for going the open route. I was worried about the uncertainty of Biopsy results you can have many biopsies and not see PC that is there so when you see PC on a Biopsy most people presume that it is the only cancer they have I did not want to take that chance the other problem is the Gleason score most of the time it is increased after surgery by at least one but that can take you from a comfort zone to a maybe good or maybe bad zone I did not want to take that chance either It was suggested that I might be good for A/S the problem with that was it meant more Biopsies and although not proved I was worried about the cancer tracking out via a Biopsy needle (no studies have been carried out for this I have my own thoughts to as why not) and it could also cause problems later if I wanted surgery so I see the safe bet was surgery and accepted the downside of the problems it may cause
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms
Gleason upgraded to 3+3 Tumour not closeto prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 8/8/2009 8:41 AM (GMT -6)   

Greetings, everyone.  John, the question is not if you have side effects but when for most of us. You played golf the day after brachatherapy.  But that doesn't mean you won't have side effect issues in a few months.  Same with other radiation therapies.  You don't have them immediately, but they come as the treatments do what they are supposed to do. 

Also, 30% effectiveness for salvage radiation is nothing to sneeze at.  I would rather have a 30% chance than a much lower  chance if I had radiation and then needed alternative therapy. 

As I have consistently said - different therapies are right for different people and everyone should choose the one that is right for them.  There is good, bad, and ugly with each of them.  I wish none of us had to deal with them. David


Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4157
   Posted 8/8/2009 9:17 AM (GMT -6)   

Dear CPA:

The point that JohnT was making had to do with the DIFFERENCE in the side effects between brachytherapy and surgery and, frankly, those differences are substantial.  Let's just talk about what happens most often...

Catheter:  With brachy it's out before you wake up or within a day.  With surgery it stays in for days or weeks.

Recovery: With brachy you are back to your normal activities almost immediately.  "Golf the next day" is not unusual.  With surgery you generally have weeks of limited activities.

Urinary Issues:  With brachy you generally have some frequency or urgency issues that last a couple of months.  These are generally controlled with Flomax and do not interfere with normal activities.  With surgery you have incontinence that typically gets better over time but lasts, in some form, for months and most patients report some interference with normal activities.

Sexual Issues:  With brachy, normal sexual activites resume within a couple of weeks of the procedure.  A percentage of patients experience ED that occurs 2-3 years post procedure and is usually improved by the use of pills.  With surgery most patients experience immediate ED that improves over time, especially with the use of pills.  Long term ED rates are comparable for both treatments.

Other Sexual Issues:  With brachy you retain some ejaculate.  With surgery you totally lose your ejaculate.  With brachy, there is no change in penis size.  With surgery, your penis gets shorter.  With brachy you ejaculate the same old stuff.  With surgery, you frequently ejaculate urine.

Yes, one can find extremes at the edges of the curve...but that's not what I'm talking about.  On balance, I think it is clear that the side effects of brachytherapy are considerably less onerous than those with surgery. 

Now...one can make arguments for surgery on other grounds.  But, it's hard to logically make a case for surgery based on side effects...IMHO.

Tudpock

P.S.  Also, your comment about having a "much lower chance" for success using alternative therapies after radiation is incorrect.  Post radiation salvage therapies are as successful as post surgery salvage therapies. 

 



Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 7/1/09.  6 month PSA now at 1.4 and my docs are "delighted"!
Tudpock's Brachytherapy Journey: http://www.healingwell.com/community/default.aspx?f=35&m=1305643

Post Edited (Tudpock18) : 8/8/2009 12:30:34 PM (GMT-6)

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