More Bad News-- I've joined the Club

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7204
   Posted 12/2/2009 1:07 PM (GMT -6)   
My doctor called today (had my biopsy on Monday).
Unfortunately, the subject says it all and I've added the information.
 
Just another shock. Each darn result is always worse than the one before.
 
Univ. of Mich. has a multidisciplinary team. I will be meeting with them; I'm awaiting a call to set up an appointment. I'm leaning greatly towards surgery but I want to hear what they have to say.
 
I'd appreciate support and, also, can you look at my signature and lend some honest insight.
 
Mel
 
 
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro!
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9
 
Biopy Report:

Biopsy Report—Prostate Cancer

5 out of 12 positive

2 cores were 3+3 (I have to get the percentages) on one side

2 cores are 4+3 (5%)

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 


Burlcodad
Regular Member


Date Joined Nov 2009
Total Posts : 254
   Posted 12/2/2009 1:15 PM (GMT -6)   
I am sorry to hear the news.  The good news as you know is that this is a highly cureable disease with many treatment options.  Keep positive and investigate all options until you feel comfortable with the course of your investigation and treatment.  For me, it was a relief to reach my decesion even though it wasn't the option I thought I was initially going to choose. 
 
Ray
diag 9/09
 
age at diag 54
 
stage 2b (biopsy done because of firmness felt on right side)
 
3 positive cores out of 12 (all less than 25%)
 
Gleason 6
 
Surgery scheduled 1/10 at UP with Dr David Lee
 
 


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 12/2/2009 1:37 PM (GMT -6)   
Mel,

So sorry to hear that you had to join our club but this is a great place for support as I'm sure you know.
I'm not an expert at this since I just had my surgery in August 2009. The good news is they found the problem so you can get rid of the beast! Your numbers look overall good to me and no peri-neural invasion! Take your time and do your research and choose the correct option for you. I didn't see what your age is.

Larry


Age 55 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
Final Path report:
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 12/2/2009 1:44 PM (GMT -6)   
Hi Mel,

I've been following your quest for information with interest. You must be the best prepared PCa guy in the history of this site. 77 posts before you get the Dx. I congratulate you. I wish I'd been half as well informed.

Not happy for you that your prostate has cancer. Don't recall how old you are, but at my age, when I was diagnosed, my doctor remarked that if we went out on the street and pulled in at random men my age, chances were a huge percentage would have PCa. The difference between me and them was I knew, I was going to be treated. Bottom line, if you got it, it's a good thing to know. And with Gleason 7 and T1C you're starting out from a pretty good place.

I suspect you'll opt for surgery --- but, whatever you decide to do the sooner you make up your mind, in some ways the better. Not because there is any urgency, but simply because once you've made a decision you have taken control and are on your way to getting rid of those nasty cells, by zapping or removal, and that's a whole new world to the one you're in now.

I'll be looking forward to your future reports,

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"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week. 
Feel free to email me at:  sheldonprostate@yahoo.com    


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 662
   Posted 12/2/2009 1:49 PM (GMT -6)   
Sorry brother...
Multidisciplinary team is the way to go. 
Good Luck and Godspeed!
Peace
Hero
Age 51, PSA 08/31/2009= 6.8, DRE Neg.
Biopsy 9/24/09 =10 of 12 positive. Gleason 6. 75% of one core.
da Vinci at Wash U, Barnes on 11/02/09
Pathology Changed Gleason to 4 + 3 = 7. Gleason 7 present in all 4 quadrants
All(4)periprostatic Lymph Nodes Negative, All(10)pelvic Lymph Nodes negative
Seminal Vesicles tumor free. No prostate extension


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/2/2009 1:53 PM (GMT -6)   
Sorry, Mel.

Was truly hoping we could give you the heave ho on membership here. But now that it is official, you are now an offical brother among us.

Sure others will disagree, but with the Gleason 7 showing up on those cores, I would be pushing for surgery. The stage I, if that holds true, is good news, because its still early on.

We are here for whatever you want.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 12/2/2009 2:00 PM (GMT -6)   
I am sorry to hear your unhappy news. A bright side is that MANY people with your numbers have been cured of prostate cancer and gone on to live long and healthy lives. I said this on another thread you began, but I think it is important, so will say it again here: Get your pathology slides re-read by a pathologist with particular expertise in prostate cancer, such as Dr. Epstein at JHU or Bostwick Labs, before you make a treatment decision. Multi-disciplinary team is a great idea.
Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7204
   Posted 12/2/2009 2:53 PM (GMT -6)   

If I go with Dr. Menon for surgery, they would be rereading my slides before any final decisions.

I assume they are good pathologists at Umich and then the Vattikuti Urology Institute at Henry Ford Hospital.

 

Both places are in the top 25 from US News and World Reports (I think Umich is 14th).

 

I would think that would be good enough? I know I would definitely want to get a second reading of the slides.

Mel

 


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

2 cores were 3+3 (I have to get the percentages) on one side

2 cores are 4+3 (5%)

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4154
   Posted 12/2/2009 2:56 PM (GMT -6)   
Mel:
 
I'm sorry you have to join us.  After all of your angst, I was hoping you could say bye-bye and sail off into the sunset.  Anyway, now that you are here, I'm sure you will take good advantage of the knowledge available. 
 
For what it's worth, I have posted below a message that I have repeated a couple of times for members who have received a diagnosis but have not made a decision.  I admit right up front that I am somewhat biased in that I personally beleive that seeds and/or radiation is a better solution than surgery for men who may be eligible for either treatment.  I base that on the study I did pre- and post-procedure, as well as what I have learned from a year on this site...including the heartbreaking stories of a number of surgery patients.  Anyway, with that caveat, here is the post for what it is worth...and I have also included a response that JohnT originally added that I believe is instructive.  Good luck...take your time and make an informed decision.
 
Tudpock
 

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.  (Others recommend Strum’s book, which I understand is excellent).  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, 1 year 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, HDR radiation, re-seeding or maybe even HIFU…there ARE options…unlike what some surgeons will imply.

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

Tudpock

The only thing I have to add to Tud's remarks are that any salvage treatment can only work if the PC is a local reoccurrance. The majority of reocccurrances are not local. If surgery and radiation are done properly the chances of local reoccurrances are low. Local reoccurrances in surgery occur because prostate tissue is left or a positive margin has left some cells in the prostate bed. Local reoccurrances in seeds occur because there was an uneven distribution of seeds leaving dead spots. Local reoccurrances in external radiation occur because the dose was not sufficient to kill the PC. Modern radiation plans radiate in high dose the prostate bed and the entire prostate killing any stray cells in the bed or in hard to reach areas such as around the ureatha and seminal vessels. Radiologists believe this gives a better chance of eliminating positive margins and local reoccurrances.
With any reoccurrance it is difficult to asertain if it is local or systemic. Pretreatment tests and stats can indicate the possibility of local or systemic reoccurrance and it takes a skilled specialist to properly evaluate this.
JT


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 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!

qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 12/2/2009 2:59 PM (GMT -6)   
compiler

sorry for you join the club. from my own experience, UM is an excellent hospital and Dr. Menon is a top surgeon in this field. you have very good options here.



Jennifer

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4225
   Posted 12/2/2009 4:11 PM (GMT -6)   
Mel.
Sorry to hear the news. The only advice I can give is to get a color doppler ultrasound from Dr Lee or Dr Bahn in order to stage your PC. Basically the only thing you know now is that you have a multifocal PC that is a G7 and G6. You don't know the volume of the tumors or their precise location, whether there is extracapusular extension, seminal vesicle involvement or if the tumors are close to something that can be damaged in surgery.
Once you know these things you can make a much better informed decision about your treatment options or you can go in blind and hope for the best. Look at Dr Bahn's presentation on Dr Barkin's website and you'll get an idea of what I'm talking about. pcref.org
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 DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology 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. G7, 4+3, approx 16mmX18mm.

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. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 12/2/2009 4:13 PM (GMT -6)   
Tudpock - I found your post very interesting. What did your research reveal concerning the relative effectiveness of seeds alone, compared to seeds + IMRT?
Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 12/2/2009 4:22 PM (GMT -6)   
Mel,
Sorry about your bad news. I know that you have been on this forum for some time and have learned a lot about all the options available to you. You are well prepared to tackle you PCa and make an educated decision. Once you decide, don't look back. By the way, do you teach Computer science? compilers in particular?
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
8 months PSA test 10/9/09 result <0.1


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 12/2/2009 4:36 PM (GMT -6)   
Mel
As one good friend told me who traveled this road before me said "You're going to be fine. You've got some rough paddling ahead but nothing you can't handle." It's exactly what I would say to you. This is nothing you can't handle. You will be fine.
BTW - how old are you? That certainly affects the decision. and you teach math of U of M? My alma mater.
Sad you're here, but glad you are.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4154
   Posted 12/2/2009 4:50 PM (GMT -6)   
Medved:
 
I can't lay my hands on the specific research I had on this...I may have saved it on another computer we have in Florida.  At any rate, here is what I recall:  With G6, the cure rate was virtually identical whether one had seeds alone or with additional radiation.  With G7 or greater, the cure rate was better when seeds were combined with additional radiation. 
 
I will try to find the specific research again or JohnT may weigh in on this if he has any data.
 
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 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 12/2/2009 4:58 PM (GMT -6)   
Mel,

Nothing more to add than what others have already stated. Best of luck in your new journey and decision process. Tudpock and JohnT offer lots of insight, so depending upon your age, you may want to take a good long look at that treatment. In hindsight, I might have perferred that route to surgery. Not second guessing, just looking back in retrospect.

Sorry you had to join this club. Again best of luck
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
                 12 month Oct 2009 .09 


kodiak
Regular Member


Date Joined Nov 2009
Total Posts : 27
   Posted 12/2/2009 5:13 PM (GMT -6)   
Mel,
Sorry to welcome you to the club.I found the hardest part of the journey was the decision as to what road to take.Once I decided on the robot I was fine.Tough decision ,so take your time and I don't have to tell you research, research, research.We are here for you brother.

Charlie
Age 52
PSA4.5
Gleason 6
Robotic surgery Oct29, 2009
Pathology margins good
1 week off cath 1 pad per day
St Clairs hospital, Denville NJ
Dr Colton
Flash up date! Nov 21,2009 50%hydralics back useable erection 1st time woo hoo!


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 12/2/2009 5:14 PM (GMT -6)   
D**n!
 
OK, here's a post I made a few months ago on another forum:
 
"I went through this decision process a little over a year ago. My best advice:

1. TAKE YOUR TIME! There is no one "right answer." You will live with the pros and cons of whatever treatment option you choose for the rest of your life. Do not let anyone rush you.

2. Individual "war stories" mean very little, with one exception I will discuss in a minute.

3. Doctors will tell you whatever is in their financial interest, i.e., urologists will recommend surgery, radiologists will recommend radiation, and medical centers that have purchased expensive proton beam machines will recommend proton beam therapy. (What a surprise!)

4. They're not light reading, but you really need to go to the medical journals. Last summer the two that I found most helpful were (1) Timothy Wilt et al., "Systematic Review: Comparative Effectiveness and Harms of Treatments for Clinically Localized Prostate Cancer," 148 Annals of Internal Medicine Issue 6 (March 18, 2008); and (2) Martin G. Sanda et al., "Quality of Life and Satisfaction with Outcome among Prostate Cancer Survivors," 358 New England Journal of Medicine 1250 (March 20, 2008). I believe that the former is available online. There may be other good articles that came out after my surgery last August - once I made my choice, I stopped following the subject.  DO YOUR OWN RESEARCH - do not rely heavily (or at all) on anything someone wearing a white coat tells you. 

5. Once you have selected a treatment option (surgery, radiation, etc.), choose a doctor who has a great deal of experience in that treatment technique. I'm talking about having treated HUNDREDS of patients with that treatment option. Do not worry about sub-issues like conventional surgery vs. Da Vinci robotic surgery. Thus, if you were to choose surgery, choose your surgeon and let him/her tell you which type of surgery to have. Same advice with respect to radiation, etc. Finding a good doctor is where patient "war stories" can help - find a doctor who has many past patients who will vouch for him/her and talk to those patients.

Good luck. It is a disgrace, but modern oncology is so primitive and filled with so many hucksters in white coats that there is precious little hard information, so just make the best decision you can and never look back."

Zen9
No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
 
 


defender3
Regular Member


Date Joined Nov 2009
Total Posts : 98
   Posted 12/2/2009 5:16 PM (GMT -6)   
Mel,

Sorry to hear you had to join the club many of us would prefer not to be in! Attitude is everything as is good support. I'm happy I found this site and the people here, and am very appreciative of the community and their support.

Best to you as you move forward,

John

kodiak
Regular Member


Date Joined Nov 2009
Total Posts : 27
   Posted 12/2/2009 5:22 PM (GMT -6)   
Zen,
Great post you hit the nail on the head.

Charlie
Age 52
PSA4.5
Gleason 6
Robotic surgery Oct29, 2009
Pathology margins good
1 week off cath 1 pad per day
St Clairs hospital, Denville NJ
Dr Colton
Flash up date! Nov 21,2009 50%hydralics back useable erection 1st time woo hoo!


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 12/2/2009 5:50 PM (GMT -6)   
Mel,

The others have said it all. Welcome to the Wish You Didn't Have To Be Here Club.

You are without doubt one of the most prepared for PCa at this point in the process. Take a few days and let it all sink in. Your scores indicate no real hurry (like making a decision in the next day or so) so try to relax just a tiny little bit.

Take your foot off the gas for half a lap.

We'll be here when you need us as your journey progresses.

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 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
da Vinci 9/17/09
Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
NERVES SPARED-positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT scheduled to begin Nov 30,2009 (74 days post surgery)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/2/2009 7:44 PM (GMT -6)   
Mel,
Sadly, you already know the drill.
My only advice is to empty that Prostate - as many times as possible.
Like air, you only really miss it when you can't get it.

Clear your calendar, pal. Here's your new schedule:

10 Integer Days, Daytosur
11 Format Days=I3, Daytosur=I3
12 Read Daytosur
15 Days=Daytosur
20 Do 40 I= 1 to Days
30 Wake up
32 Take shower
33 Do 36 I= 1 to 100
34 Insert reproductive device in warm spot
36 Pull out of warm spot
37 End
38 Orgasm
40 End
45 Sleep
50 End

Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 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
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 12/2/2009 8:47 PM (GMT -6)   

Mel,

Throughout your inquiries you seem to have been super-ready to jump the gun in anticipation of the result. For your own sake and the sake of your family, once again, take a deeeeep breath. With your research and counsel of medical professionals you will arive at a decision. Deciding the form of treatment is, mentally, the most difficult stage of the journey. Then hand it over to the professionals and God. Then, as my Doc said (and it stuck in my mind as one of the most comforting statements), "get on with the rest of your life."

This journey can only be taken one step at a time.

Best wishes,

Ted


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 12/2/2009 9:00 PM (GMT -6)   
You are like I was, but your questions are much better than min were. I started googling everything in the world relating to PC. I kept getting links to this site. I did find some good sites for options that showed the pros and cons and each. I believe it was the Mayo clinic website. Keep on researching but do take a deep breath. Easier said than done!
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
12 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7204
   Posted 12/2/2009 9:21 PM (GMT -6)   

A couple of comments.

 

Yes, I have asked a lot of questions in advance of results. I know myself. For me, I would have actually been more of a basket case by doing nothing and then getting a cancer dx. Then what? To be totally panicked and then try to calm down and think about what to do is just not feasible.

That's just me. Folks, we all have our ways of dealing with crap. I've always been laid back and logical, but here I felt I needed to feel informed about the next steps. Perhaps it appeared extreme or was/is extreme but...different strokes, I guess.

 

I've learned a lot -- but the more I learn, the more questions I have. In fact, I'm going to post another one now!

 

Mel

 


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

2 cores were 3+3 (I have to get the percentages) on one side

2 cores are 4+3 (5%)

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 

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