Head swimming - How do you decide what to do?

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Puck's wife
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/30/2009 7:09 PM (GMT -6)   
My husband was diagnosed with pc in March 09 after a routine PSA done during a regular physical.  His PSA was 27.3. He was referred to urologist who retested PSA (24.1), DRE non palpable so biopsy was done. Gleason 8; Bone Scan and CT Scan followed which were clear.
Have talked with both a surgeon and a radiation oncologist.  Surgeon recommends RP followed with radiation. Radiation Oconlogist recommends ADT, high dose implant radiation and IMRT with the ADT continuing 2-3 years. How does hubby decide?
Husband's age: 52
PSA 24.1
free PSA .95; 3.99%
DRE - some hardness on left side
Biopsy - March 2009 14 cores - all positive except one
Gleason 8 (4+4)
Stage T1c
Bone Scan - clear
CT Scan - clear
 
 
 
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/30/2009 7:26 PM (GMT -6)   
Tough call.
My numbers were in the vicinity. I decided on surgery to get a visual of what that prostate really looked like. I am glad we did but I don't know it made any difference. Let your husband know that I took the surgery/ADT/Radiation rout and I am doing well. If I may, where are you guys located? How well known is the surgeon?

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 4/30/2009 8:19 PM (GMT -6)   
Did any tests reveal extracapsular spread or is the surgeon just recommending radiation based on your husband's PSA? I know the odds are that he will most likely need follow up radiation, but just curious if the tests revealed anything else. Did he have an MRI? It is such a difficult decision to make and my father's situation was similar in that we were in a bit of a gray area, where there was not overwhelming evidence to go one way or the other. We met with as many experts as we could, gathered all the best information and opinions and made a decision. (A little bit of gut instinct too) It is such a personal decision and know that whatever decision you make, don't look back. Good luck and we will support you guys in whatever way we can.
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 4/30/2009 8:49 PM (GMT -6)   
Greetings Puck and Puck's wife.  My best suggestion is to talk to a specialist that doesn't do surgery and doesn't do radiation but knows prostate cancer inside and out.  Maybe even 2 of these guys.  Get their best advice and then make an informed decision and don't look back.  Most of us here think we made the right decision for us and I think most of us are probably right.  But everybody's situation can be slightly different.  What was right for me may not be best for you.  My urologist - who I have a lot of confidence in and doesn't do either radiation or surgery - told me that for anyone in their 50s with the cancer totally contained in the prostate should have the surgery.  I did some research, had confidence in him, and asked him for a referral.  He referred me to a surgeon that I really liked and came to have great confidence in him.  Surgery was right for me - it may not be for you.  If you have further questions, please do not hesitate to ask.  I'm sorry you have to be here, but you are among friends.  David

Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


CapnLarry
Regular Member


Date Joined Apr 2009
Total Posts : 75
   Posted 4/30/2009 8:52 PM (GMT -6)   
For a non-judgemental weighing of various treatment paths, see the American Cancer Society's 'Nexcura' site, /www.cancer.nexcura.com/Secure/ToolBox.asp?CB=265. You'll have to put in a ton of information, and you may not have it all (go back and beat up his urologist). At the other end of the process you get assessments of the different treatment options, questions to ask his Dr. about each, and most importantly, access to the underlying research papers.

Also have a look at the Sloan-Kettering site, especially in your case the "pre treatment" item, www.mskcc.org/applications/nomograms/Prostate/index.aspx. Much quicker, demands less information, but it will also give you more questions to ask your Dr. In your phase, unlike with most things in life, having more questions is a good thing.

If you can find them, either the Walsh book (which I haven't seen) or the Scardino book (which I can recommend) are worth the outlay.
Larry Shick
Personal homepage incl. PCa story: www.sv-moira.com.
01/09: Diagnosed (age 60) biopsy PSA 4.4, free PSA 9%, T2c stage, Gleason 7 (3+4), 7 of 14 cores; 6'2", 200 lbs.
03/09: Robotic surgery (Dr. Kawachi, City of Hope) 47 gms, 10% involved, staging/Gleason unchanged (pT2cNXMX), margins clear, no ECE/sem ves involvement, fully continent from day 1, some success w/Viagra 50mg/day.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4250
   Posted 4/30/2009 8:55 PM (GMT -6)   
Puck's wife,

I would get a 2nd opinion from a prostate oncologist. You are most likely going to need one in the future and getting him on board sooner will help in the recommendation. Given your husband's stats, high psa with a high gleason, the odds are that surgery won't cure your husban's cancer and would be used only to debulk the tumor. The pathology after surgery will give you a better idea of what you are dealing with. You have to decide if it's worth the side affects to get this information. In any case your husband will have to go on both radiation and ATD after surgery. If the surgeon is recommending radiation after surgery he's telling you that he can't get it all. Any salvage radiologist would recommend ATD with those stats.
You have to face the high probability of his PC being systemic and not local and you should look at systemic treatments over local treatments or in combination with local treatment.
I would also get a Combidex MRI with a G8, PSA 27, to spot lymph node involvement. The CAT scan is next to worthless.
Good luck and keep asking questions.
JohnT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

As of April 10 and 7 weeks on Casodex and Proscar PSA has gone from 30 to 0.62 and protate from 60mm to 32mm. Very minor side affects. Doc says all this indicates tumor is not aggessive

Awaiting schedule for seed impants

 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 4/30/2009 9:34 PM (GMT -6)   
Puck's wife,
I think John's recommendation is right on. I had similar Gleason score but my PSA was under 4. I opted for surgery (Robotic) hoping to get clear margins which thankfully I did., however I did have extra prostatic extension and did lose both nerve bundles which is the price I had to pay for my choice. I wish you and Puck the best of luck.
Age: 67
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
Dx 12/30/08
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
Surgeon: Dr. Randy Fagin, Austin TX.
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Bilateral 10-20% involved
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
seminal vesicles clean
Lymph nodes: not dissected
1st PSA test 4/7/09 result <0.1


Puck's wife
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/30/2009 9:52 PM (GMT -6)   

Thank you all for your input. We are in NC.  We have access to a Prostate Cancer Center of Excellence so we do have confidence in the experience of the doctor's we have seen. We will try to locate a Prostate Urologist and talk with him. We are still trying to gather info and are scheduling an MRI which will hopefully give us a better picture. I in the process of gathering all the test reports so that I will have copies of everything.  The surgeon we saw today is also having another pathologist look at the biopsy slides to see if he agrees with the prior Gleason score.

We have made dietary changes and adopted new supplements so hopefully these things will help while Puck goes through whichever treatment he decides to follow.

Thanks again. I will update as we find out more.  It helps to have contact with others going through the same thing.

Puck's wife


Husband's age: 52
PSA 24.1
free PSA .95; 3.99%
DRE - some hardness on left side
Biopsy - March 2009 14 cores - all positive except one
Gleason 8 (4+4)
Stage T1c
Bone Scan - clear
CT Scan - clear
 
 
 
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/30/2009 9:56 PM (GMT -6)   
Just so you know, Duke University has one of the top prostate cancer programs. Your surgeon is doing you right by having a second opinion on the biopsy. He may have sent the slides off to John Hopkins where Jon Epstien is located. He is one the very best pathologists in the country for PCa.

Again, keep us posted. We'll be here when you have questions.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 5/1/2009 2:19 PM (GMT -6)   
You have time
PC is almost always slow. Many doctors want to wait at least 8 weeks after a biopsy to let it heal and before beginning treatment. Two to four months after biopsy is not uncommon for starting treatment.

You have only good choices
PC is very treatable and all of the mainstream alternatives have a very high probability of a good outcome.

Learning resources are available
Most of us have been through the “hit upside the head” feeling of being overwhelmed by our ignorance, but you do get through it. Some of the other members have given you some good pointers already.

Two are stronger than one
It is great to have you here and your knowledge and support will be of great value whatever the future holds for your husband. The stupidest thing that I did in the early diagnosis phases was to go to the doctor by myself (a bad case of “I am grown up now and must be a brave little soldier.”) Two people listen better and two people think of better questions. I hope your husband will not be as stupid as I was.

Ask, ask, ask
You can see that this group is greatly in favor of talking to second and third (at least) doctors. Good doctors recognize and expect this.

Good luck and stay in touch.
Age at diagnosis 67, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7


califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 5/1/2009 6:05 PM (GMT -6)   

Several of the things I found so helpful have been mentioned. The patient should take along another person. There is too much info to absorb at a time like this. And two can remember all the questions to ask. I had even written some down to ask and forgot.....

The other thing is to get all the knowledge you can. Read read read. Here is a fantastic place. Go to cancer websites. Ask others who may have been there. Several doctors viewpoints are very helpful.

I too was offered either RP (either open or Robotic) or radiation. We did all the research and in my case felt the Robotic was the choice for me. I went in feeling confident and still am just as confident as ever I made the correct decision as I felt informed.

Sorry you had to join this elite club, but glad you are here to ask questions. Keep on asking!

Bill


Don't get discouraged!!
CalifGuy
 
Diagnosed Feb 2008  54 years old
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008  Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01
Five month PSA less than 0.1  Lab did wrong type of PSA test so this test was not as accurate.
Eight Month PSA less than .01  Yeah!!!!1


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 5/1/2009 8:27 PM (GMT -6)   

Hi Puck's wife

 

I would agree with Tony.  Since you are in NC like me you should see the Dr's at Duke like I did.  They have a multidicliplinary approach to treating PC.  I had open surgery in May of 2007 and I am coming up on my two year of less than zero PSA's.  If you would like I could give you the number for them. 

 

Mika


age at dx 54 now 56
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
Tossed the pads this spring
ED still a problem
Got a shot last week and it was great
A year an a half of zero's
 


KeyWestPirate
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 5/2/2009 4:01 PM (GMT -6)   

After all the research I did after my diagnosis I came to the conclusion there are three ways to go:

HIFU

Proton Beam

Robotic (Da Vinci) RP

If your cancer is early stage, Gleason 6 and PSA under 10, AND your prostate is small (less than 40 grams), then HIFU will produce the best results with almost zero erectile or continence problems.  Unfortunately, although they were trialing throughout the US last year, HIFU is still not FDA approved in the US.  It has been used for years in Europe, Japan, and lesser time in Canada.  You CAN have it done outside the US, but the cost runs around $25K  I didn't qualify for one of the trials because of the size of my prostate, which eventually turned out to be 89 grams.  You can google HIFU and HIFU Trial for more information.  These are some pretty happy PC survivors, but many of us don't have the money or the qualifying prostate and cancer stage.  There are two competing machines, the French Ablatherm is the best.

Proton Beam:  If you live in Houston, or close to Loma Linda in So CAL, and have eight weeks plus for the therapy, AND can wait to get on the treatment list, AND your insurance will pay for it, then this is a good way to go.   WWW.ProtonBob.com  has details.  This is NOT conventional radiation therapy.  Don't let your urologist tell you that it is comparable.

 

Robotic (Da Vinci) RP:  This has become the gold standard for the rest of us.  Techniques have advanced to where quick recovery of continence and erectile function is almost assured.  EVEN SO, the skill of the surgeon and his level of motivation is paramount.  I can't emphasize this highly enough.  The potential offered by the robot is there, but there is no guarantee you will have the same results from surgeon B as you will get from surgeon A.

Why Robotic RP?  It's minimally invasive, one small vertical incision for the camera, and four very small half inch cuts for the  instruments and tubes.  Complete illumination and access to the abdominal cavity means the surgeon can easily inspect lymph nodes,  resect nerve bundles, and make a quality re-attachment of the urethra to the bladder neck.  Blood loss is minimal, you're in the hospital one night, the surgeon sits comfortably at a console to perform the surgery.  Comfortable is important, the nerve sparing and bladder neck re-attachment is tedious and time-consuming.  It adds almost an hour to the total time of the surgery.

  If you don't want to pee your pants the rest of your life, and you (or your wife) enjoys sex, then you need to find the right surgeon.

The Da Vinci camera provides a 3D, illuminated and magnified look at everything.  The prostate is removed, and can be sliced and diced to find the true extent of the cancer.  You know where you stand  - immediately.  If you're good to go, that's that -ge on with your life.  If the cancer has spread, you know where, how much, and can make plans to fight on.

If you find a competent surgeon, then you can expect my results:  dry the day after the catheter was pulled, and some erectile recovery at three weeks.  You can't leave this part to chance.  Remember the old saying:  What do they call the medical school student who graduated last in his class?  The answer is  "Doctor" and he could be your urologist. 

Brachy and External Radiation:  If you're 85 with cardiac and renal problems,  and can't find a surgeon to operate on you, then these MIGHT be an option. 

 But why would anyone else choose the  "Shot In The Dark"?? as the initial treatment procedure.  The hormone therapy associated with these options will devastate you  (google Lupron victims), and you still have no idea if you killed the cancer, or where it might be.  You live in fear for years, until on e day, sure enough, your PSA starts to rise again.  The only advantage to the "Shot In The Dark" is to your urologist's (and his partner oncologist's) college age kids.  It pays their tuition.  It's not going to do anything for you but delay the inevitable.

Beware the urologist who pushes Brachy or External Radiation with the words:  "I get the same results"  He means, he makes the same money.  Actually more, because he's going to be taking care of you for years to come.  Endless PSA tests, those $2700 Lupron shots.  And when your PC eventually recurs, KaChinng, KaChinng.   He actually gets better results!

 

I MAY be biased.  I almost went the Brachy route.  My first urologist never mentioned the robotic RP option.

 I was talked into a Lupron shot.  I drove to Loma Linda and checked out the Proton Beam, but would have had to move there for the treatment -and wait to get on the list.

I found a crackerjack surgeon who was relly into the Da Vinci robot  (my wife is an OR nurse and was able to make the necessary, discreet inquiries as to who was competent and who was not.  Outside of the medical community that information is hard to come by).  At the time we only had one Da Vinci robot in our state (Idaho).

I was completely dry the day after the catheter was pulled, and had some erectile function at three weeks.  It's gotten steadily better.  Overcoming the results of the Lupron shot was the worst part of the cancer experience.

My PC was confined to the prostate capsule.  It's easy to offer a prognosis -good or bad- when you can see the abdominal cavity so clearly during the robotic RP, and you have the prostate in hand to biopsy.  With the "Shot In The Dark" you'll never know where you stand.

If you want to see what I talk about, go on YouTube and search for  Da Vinci Prostatectomy  The entire procedure as done at Cornell Weill is there. 

This is the rest of your life we are talking about here.  PC moves slowly.  It's important to invest the time necessary to make the right choices.

 

 

 

 

 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 5/2/2009 4:15 PM (GMT -6)   
Key West,

You never mentioned the open surgery? And why? Have nothing against robotics, definitely the in thing right now and more and more RP ops are being done that way. There are reasons why some men can't have the robotics, and some surgeons that are best with open. There are advantages to open to. The argument about 5 small incisions against 1 bigger one is only worth so much, having had major surgeries before. If you have insurance, whether you are in the hospital 1 day or 4, doesn't make much difference either. Hospitals are so famous for wanting to dump out people early these days.

Pc moves slowly, as a general rule, I would agree. But with aggressive variants, that isnt always true, and there is a thin hard to discern line between containment and escape, one the patient or even the doctor can't know by looking or waiting.

Good post though, there are lots of options out there, more for some then for others, still comes down to location, medical history, and of course, money and rescources.

David in SC
Age 56, 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
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4240
   Posted 5/2/2009 6:05 PM (GMT -6)   

Dear KeyWest:

Honestly, I was tempted to ignore your post as it is filled with inaccurate statements but I will write a short reply on the off chance that someone new might actually believe it. 

My comments:

1.  Nice advertisement for davinci...I'm happy you can copy and paste.

2.  HIFU does not produce "almost zero" ED problems...the stats that are available show about 30% ED issues.  Also, even though this may become a standard treatment in the USA, it is still not FDA approved which is why a lot of men stay away from this even though they can afford to have the procedure in Mexico.

3.  Proton Beam is certainly a viable alternative but modern EBRT techniques compare favorably with PBT results.  And, there are actually 5 sites (more coming) where men can have this procedure….Jacksonville, FL, Boston and Bloomington, IN, in addition to the ones at Loma Linda and Houston.

4.  “…quick recovery of continence and erectile function is almost assured”, as you say for robotic, is a vast overstatement.  This is highly patient dependent.  Studies show that Robotic patients tend to be less happy with their results than open patients.  This is not because the results are worse but rather because robotic has been so overhyped as you are doing that patients’ expectations are raised to an unrealistic level.  I’m happy your results are so good but that is not the case in all patients and to state that as fact is irresponsible. The long term incontinence and ED statistics for robotic and open – given similar PCa cases – are very similar.

5.  To leave out open prostate surgery as a viable open is a serious omission in your research.  That is still the gold standard and, done by an experienced surgeon, yields cure results that are certainly equal to robotic.

6.  Your comments about brachytherapy and eternal radiation border on ignorance but I’ll give you the benefit of the doubt and call it sloppy research.  Both of these protocols have been proven to be as curative as surgery and, depending on the patient, may yield fewer side effects.  There are good reasons to choose either radiation or surgery…some of the reasons may be medical, some may by psychological but either is a good choice for many men…particularly for ones with the stats that you quote.  Also, hormone shots are not necessarily part of the treatment.  They would probably have been for you with a large prostate but not for men with normal size prostates, reasonably low PSA’s and low or intermediate Gleason scores.

However, you are certainly correct when you say it is important to take the time necessary to make the right choices.  I hope your choice was right for you but your “research” leaves much to be desired.

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 5/1/09.

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 5/3/2009 9:40 PM (GMT -6)   
KeyWestPirate,
We must be careful here not to make the mistake of seeing what each of us selected for our treatment as the be all and end all of PCa treatment. What you said is not correct and I am a (so far) successfully treated Robotic patient. There is no difference in the outcome regarding the results of open surgery and robotic surgery. You simply cannot say that your thus far successful treatment is a result purely of your particular surgeons skill. Every single case of PCa, our bladders and other physical attributes vary and therefore every treatment and outcome will vary. No matter how extraordinary our surgeon, if the nerves are involved then they cannot be saved and E.D will always be a problem. Likewise the extent the bladder and control muscles may be impacted is dependent on the location and extent of the tumour which can effect the way the ostomosis can be done. Even as a surgery guy I know well that your dismissal of radiation as a primary treatment is not based in fact. Outcomes for successful radiation treatment are very much the same as surgery and there are circumstances when it is evident that it will be the better treatment. While we all should tell of our experience and how good it was for us we must be careful not to allow it to blind us to the equally good outcomes of our fellow members who chose a different treatment path. That is why this site and group is so valuable to the newly diagnosed.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01

Post Edited (BillyMac) : 5/3/2009 8:51:14 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 5/3/2009 9:52 PM (GMT -6)   
Tudpock - great post and answer. I liked your point 4, someone needs to say that sometimes here, robotic surgery is not all sugar and roses as some of the hospitals and drs like to push. Still have no objections to that method of surgery, in my case, there were other issues where a robotic op would have been aborted anyway, so kind of a mute point to me. Your point 5 is great too, traditional open surgery is the true "gold standard" that has been used for decades now, again not saying that it's the only way or the best way.

Billy, as usual, yours was a good well rounded post too. Some men here have had the very best surgeons available in the US and had have a terrible time with side effects, and others have mediocre surgeons in remote areas with spectacular results. It comes down to how our bodies, imune systems, etc. react, as well as our general health history, family history, etc. One of many good reasons why PC is not cut and dry, no matter how much we wish it were so.

David in SC
Age 56, 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
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4250
   Posted 5/3/2009 10:46 PM (GMT -6)   
Tudpock,
Agree with your points 100%. Anyone who says that there is one best way to treat this disease is badly misinformed.
Regarding surgery, Sardino states that at Slone Kettering only 60% of the surgeries are successsful, meaning cure, no permenant side affects or no complications. Still surgery may be the best opton for some men.
KeyWest, update your research. There is no difference in 10 year survival in early state localized prostate cancer between surgery, radiation, ATD3 or any other treatment.
JohnT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

As of April 10 and 7 weeks on Casodex and Proscar PSA has gone from 30 to 0.62 and protate from 60mm to 32mm. Very minor side affects. Doc says all this indicates tumor is not aggessive

Awaiting schedule for seed impants

 


jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 5/4/2009 3:51 AM (GMT -6)   
I go in for open surgery tomorrow at 6am and this thread has finally convinced me I have made the right decision.

This thread and the "prostate transplant" thread smilewinkgrin
Age 62, Sex Male
PSA - 3-20-08 2.7; 4-17-08 3.1; 9-18-08 3.6; 1-22-09 3.8
DRE negative
Ultrasound/biopsy 2-12-09, 50cc
4 of 12 samples positive 3+3=6, Right mid-medial <5%, Right mid-lateral 10-20%, Right base medial 10%, Right base lateral 10% adenocarcinoma
RRP scheduled for 5-5-09

Remember, don't drop the bag!!!


KeyWestPirate
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 5/4/2009 4:42 AM (GMT -6)   

I appreciate the kind and gentle corrections to my post. 

 I did notice that except for Tudpock18 everyone who responded had RP, and of the immediate respondents, only one was open RP, the remainder robotic assisted. Tudpock18 had a small prostate.  If my prostate had been that size I would have been able to get into one of the many HIFU trials running in the US last year.  40 was the cut-off.  HIFU has been used in Japan and Europe for years, and until the Euro became so strong a lot of men went to Germany for the procedure.  The survivors' stories are positive:  "I was drinking at the hotel bar the afternoon of the (outpatient) procedure, and I had sex a week later".  I wouldn't mind being one of THOSE guys.

I AM biased and make no secret of it.  My first urologist gave me a Lupron shot, pushed me into Brachy, convinced me that a $8500 TUMT would shrink my "45" gram prostate so the seeding would be simpler and more effective.  It didn't, but I had to be cathed at an ER room shortly afterwards, and I never did urinate as well until after my RP.  He had two opportunities to gague the size of my prostate, at the biopsy and during the TUMT.  It eventually turned out to be 89 grams.

Yes, I ran the numbers myself with a variety of different tools,  and have to agree, that given my Gleason and PSA my 10 year PC free expectancy was right at 98% with the Brachy.

Every patient IS different.  Everyone is driven by different needs and expectations. I had convinced myself that Brachy was the best option.  I was VERY concerned about continence and erectile issues.  I made a mistake.

 I became a robotic RP believer because of the minimally invasive aspects of the procedure, the potential certainty of my prognosis, and the tools offered by the robot to the surgeon.  The surgeon sits comfortably at a console for what is a long surgery.  The  camera illuminates the abdominal cavity, presents the operating field to the surgeon in 3D,  and offers up to 12X magnification.  One of the robotic tools cuts and cauterizes at the same time, minimizing blood loss.  The incisions are very small, the largest in my case only two inches.  Five months post-op  I can no longer see the scars of the other incisions.  I understand that there are valid medical reasons for open prostatectomy, but I can't see how anyone can dispute the advantages of the robotic procedure.  Sure, there is probably some hyperbole attached to what is a very expensive purchase for the hospital.  They NEED to sell robotic RP's

I watched the robotic  surgery performed on YouTube and listened to the narrative of Dr. Tewari.  I was impressed with his emphasis on nerve sparing and bladder neck re-attachment techniques.  There just seems to be a greater motivation on the part of the robotic surgeons to emphasize these important areas.  Any surgery is going to get the prostate out.  What we want is to maximize our results in regards to patient impact,  continence and erectile function.  The  robot gives the surgeon the tools to do the best surgery possible. 

The rest is up to the surgeon.

ADT is commonly a part of Brachy    --much more commonly than not.  I was devastated by the resulting low testosterone.  I was depressed, irritable, endless hot flashes disrupted my day and my sleep, I suffered significant short term memory loss.  I couldn't remember what I had watched on television the night before.  Even though I had some erectile function shortly after the RP, I had absolutely no interest in sex until I did a two month testosterone replacement (Androderm patch).  Why endure this if it's not necessary?

We are seeing more and more posters (here and at other sites) report good continence and erectile results after a robotic RP.  My surgeon claims he gets consistently similar results to what I reported.  His enthusiasm for the robot is contagious.  Perhaps he is an exceptionally good surgeon.  Perhaps I was exceptionally lucky.  There is no way to know for sure.

What finalized the RP decision for me was the ability to immediately find out where I stood.  I understand that Gleason and PSA numbers have become very good indicators of the extent of the cancer, and of the eventual prognosis.  Across tens of thousands of PC survivors you have strong statistical relevance when you applly these indicators.

But, what about you and me?  How do you and I know where we stand?   PSA is dependent on a number of factors.  I had a large prostate and BPH.  Gleason is dependent on the biopsy. My biopsy showed a very small amount of cancer, confined to one side of the prostate.  The path report showed small amounts of cancer in most of the lobes. Staging didn't change, but the biopsy missed that other cancer.  What if there were a cancerous nodule right next to the urethra or close to the edge of the capsule?  Would the seeding have gotten that?

 The extent of MY PC could vary greatly within a standard deviation.   I wanted to know if the cancer was contained within the capsule.   I didn't want to wait two years to find out. The only way I could know for sure was via RP.  This cancer cost me the better part of a year, but now I can confidently move on with my life.

I had never heard of the Combidex MRI that JohnT speaks of.  A PC imaging tool with a 96% accuracy rate is fantastic.  To be able to identify the location and extent of the cancer changes the entire dynamic.  If we could see the cancer many of us "early stagers" would opt for expectant management (watchful waiting).  There is rumor of a PC vaccine.  Who knows what else might appear next year.

Had I known of the Combidex MRI I might still have my prostate turn

Perhaps there IS no difference in survival rates between surgery, radiation, and hormone treatment. I have a hard time accepting the numbers. Something just doesn't logically follow.  And why would people spend enormous sums of money for the proton beam machine, if external radiation was the equivalent?  Survivor rates simply don't tell the entire story.

   Robotic RP is so new that we really don't have anything except anecdotal evidence for comparison. You DO have to admit that there will be big differences in quality of life, especially when ADT is added to the mix.  Just knowing where you stand coupled with the minimal invasiveness of the procedure speaks to the superiority of robotic RP.  The uncertainty of the prognosis weighs heavily on most men.  Who wants to live with cancer in their bodies?

I apologize for the long and rambling post.  I appreciate everyone taking the time to make what are some very good points.  I stand humbled and corrected, but if I had to do it over again, I would make the same decision.  I KNOW my PC is gone, never to return,  I'm dry, and my erectile functionality gets better every week.  I hope everyone eventually does as well as I'm doing, whatever their choice of treatment.

 

 

 

 

 

 

 


GarthK
Regular Member


Date Joined Feb 2009
Total Posts : 74
   Posted 5/4/2009 5:51 AM (GMT -6)   
Puck's Wife,

You asked one question, "How to decide?", and you got the fairly usual debate amongst the regulars here about the various types of treatments. To answer your initial question, I found a urologist I trusted and went with his advice. In your case, it may be more complicated so I would follow Tony's advice given above and schedule a visit with the Duke Prostate Center @ http://www.dukehealth.org/Services/ProstateCancer. Any of the major centers that have a group specializing in prostate cancer would probably be okay unless funds are unlimited and you are willing to try one of the latest approaches but Duke is probably the closest and, no, I'm not an alumni. They should come up with what they feel is the best approach which may be different than your original uro so you will probably still have to make a decision but it will be based on good info. That's about as good as it gets, I'm afraid.

Good luck,
Garth
Vitae:
DOB: Q4'46, HT: 5'9", WT: 180
PC:
Biopsy: 12/08
Cores: 4 of 12+ positive
PSA: <2.5
DRE: Slight enlargement, one node
Gleason: 3+3
Surgery: RRP on 1/21/09
Catheter: 15 days
Pathology:
Adenocarcinoma occupying 5% of prostatic volume (right posterior aspect)
Gleason: 3+2
No extraprostatic extensions
Perineural invasion within prostate only
No angiolymphatic invasion
No seminal vesicle invasion
Clear margins
AJCC: pT2a
Post-op PSA's
3/10/09 < 0.014 (undetectable by machine)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 5/4/2009 9:10 AM (GMT -6)   
From a PC patient's wife to another...

my husband (and I agreed) opted for the surgery - had robotic in March 2008. His stats are below. I know little about radiation therapy other than what I have read but we did speak with a few men who had RT (both external beam and seed implants). Our concern with RT dealt with the longer term side effects rather than the initial outcome.

I spoke with a few medical professionals and the consensus was that with cancer, it's almost always best to remove it if possible. In addition, should PC rear its nasty head down the road, surgery still left us with the option of RT if needed.

As with any treatment, the after effects of surgery can be hard to deal with. My husband is almost 14 months post op and his first usable erection occurred very recently. In addition, he still uses a pad whenever he does anything strenous (playing tennis, walking, etc.). However, his doctor put him on Enablex about 3 months ago and both control and frequency have improved considerably. His prescription just ran out and he's going to "test the waters" to see how he does without it. If needed, we'll get another Rx from his doctor.

As someone noted, robotic surgery is not indicated for all men, especially those who have had other abdominal surgeries. If there are no medical contraindications, surgery (whether open or robotic) is an excellent treatment option. Experience of the surgeon is the most important factor, so don't be afraid to "interview" surgeons should you decide on this route.

Our surgeon has done hundreds of prostectomies (both robotic and "traditional") and favors the robot for the clear view he has of all the organs before the cutting begins, as well as the lack of blood loss (my husband lost a couple of tablespoons of blood during his 5 hour operation).

Good luck with your decision, and please come back to let us know how things work out for you and Puck.
Husband diagnosed in February 2008 (age 57). Cancer discovered during routine annual physical. Clinical Stage T1c, Gleason 7 (3+4), with 2 out of 10 cores testing positive. Perineural invasion identified on biopsy. DRE was negative.

Robotic surgery in March 2008. Pathological stage upgraded to T3a, Gleason still 7 (3+4). Miniscule invasion into prostate capsule but no cancer found outside capsule (surgical margins and seminal vesicles were clean).

1st PSA 3 weeks post op: 0.1; 2nd PSA 7 weeks post op: 0.0. PSA remains at 0.0, and will continue to be checked every 3 months for the first 2 years due to capsular penetration.

Currently on Enablex to control frequency of urination (tried Vesicare but stopped due to heart palpitations) and on Viagara 2 - 3 times a week. Recuperation from surgery was uneventful.


Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 5/4/2009 10:03 AM (GMT -6)   
Why would the robotic procedure all of a sudden become the "gold standard"?? There isn't even any long term data available yet. I bet open is still considered the "gold standard" until proven otherwise.

55 and healthy in NJ
Regular Member


Date Joined Apr 2009
Total Posts : 58
   Posted 5/4/2009 12:34 PM (GMT -6)   

Based on what I've read, it's not the robotic procedure that's the "gold standard," it's the radical prostatectomy that is the "gold standard."  The radical prostatectomy can be either open, laparoscopic, or robot-assisted laparoscopic.  The advantage of laparoscopic (either) over open is a shorter recovery time - from the surgery itself - with the recovery of continence and potency being about the same.  The advantage of robot over non-robot laparoscopic is better precision.

Did I get that right?  The experts here at the forum will correct me as appropriate. 

By the way, my robot-assisted laparoscopic radical prostatectomy is scheduled for May 18, and I'm having an MRI and cystoscopy this Friday, May 8.  Now, what if the MRI shows something different than what the biopsy showed?  Do I change my plans?  Talk about head swimming!

Greg


Age 55
Physical exam (01/22/2009): blood pressure 130/85, good EKG; basically all-around healthy
PSA 4.9 (02/05/2009)
Urologist DRE observed slightly hardened left lobe (02/19/2009)
Chest X-ray normal (02/23/2009)
Biopsy (03/03/2009)
PCa present in all sextants, <5% to 50%
Prostate gland 37 grams
Gleason score 7 (in two sextants, scored 6 elsewhere)
Cystoscopy (05/08/2009), showed clear
MRI (05/08/2009), awaitng results
Robot-assisted laparoscopic radical prostatectomy scheduled for 05/18/2009
 
 
Surgery (daVinci robotic) consult with Michael Esposito, M.D., http://www.roboticurology.com/ (03/30/2009)
Radiation oncology (Varian IMRT/IGRT RapidArc) consult with Mark Macher, M.D., http://www.njneuro.org/fp/gammateam.asp (04/08/2009)
Other resources: Dr. Peter Scardino's Prostate Book (Peter Scardino (Sloan-Kettering), 2005); Urologic Robotic Surgery (Michael Esposito, Vincent Lanteri & Jeffrey Stock, 2007)

Post Edited (55 and healthy in NJ) : 5/12/2009 9:08:47 AM (GMT-6)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4250
   Posted 5/4/2009 12:59 PM (GMT -6)   
Greg,
If you get an MRI make sure it is with a Telsa 3 machine. Most places use a Telsa 1.5 and is not that effective.
JohnT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

As of April 10 and 7 weeks on Casodex and Proscar PSA has gone from 30 to 0.62 and protate from 60mm to 32mm. Very minor side affects. Doc says all this indicates tumor is not aggessive

Awaiting schedule for seed impants

 

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