Wife and I met with urologist today need some advice

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Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 5/10/2010 5:23 PM (GMT -6)   
We met with my urologist who is recommending Da Vinci. He talked about all the options and surgery sounded like the best option.
Okay where do we go from here? I had a stroke in 2004 so he says I need to consult with my neurologist and then because of my age with a cardiologist.
Wife and I think the da Vinci surgery would have the least impact on our day to day lives.
What do people think? Are we missing something?
Thanks
Age 68 on 4/30/2010
weight 185
height 6'
Samples taken 4/19/2010
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%

PSA 3.5 Mar 19
PSA 2.5 Apr 4


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 5/10/2010 5:27 PM (GMT -6)   
Ger,
I cant really answer your question in any other way than to say study all of your options and by all mean consult with youur heart doctor or neurologist. Most folks on here swear by Dr. Strums book on PCa although I have not read it. Good luck with your journey and keep us posted.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 5/10/2010 5:39 PM (GMT -6)   
Based on your low PSA, low Gleason, and age, I would recommend a second opinion. You may be a candiate for Active Survelliance.

Yes, the DaVinci is the least invasive and offers faster recovery, and le3ss blood loss. But incontinence and ED are real side effects that you may have a 40 to 50 % chance of having permanently.

Brachy therapy is virtually non invasive ( needle sticks) good results, and less risky than surgery. Side effects are low. at least initially.

The point of my post is to take some time and research the options. Surgeons most usually reccomend surgery. Radiation guys most usually recommend radiation. I think you have time to investigate what will work the best for you, considering your medical history. and the low risk PC that you have.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/10/2010 5:41 PM (GMT -6)   
Ger,

Robotic Surgery would be the least invasive of the two surgical approaches, i.e. Robotic vs. open. But did you consider Radiation or Radiation Seeding in your research? If suitable, either of them would be much less invasive then either form of surgery.

The fact that you had a stroke (though you didn't state how serious), could make any surgery risky, but that is why your dr. wants you to talk to your neurologist.

Please keep us posted

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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Tim-from-Maine
Regular Member


Date Joined Apr 2010
Total Posts : 83
   Posted 5/10/2010 5:46 PM (GMT -6)   
It is a tough decision to make. You have time to do more research. I chose the surgery, and I am glad I did, now that I need secondary treatment. But I do not believe that it was the least invasive to my life. The incontinence and ED side affects have been difficult and, for many take a long time to go away, if ever.

I would talk to another URO and a Rad Onc before making a decision.
Dx age 62 - March 2009 - Gleason 7
Surgery - da-vinci RP on April 29, 2009 Gleason upgraded to 9
Started VEGAN diet June 2009
3 month PSA - <.04
6 month PSA <.04
9 month PSA .05
12 Month PSA  .16
SRT begins May 3, 2010
 
 


Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 5/10/2010 7:35 PM (GMT -6)   
Prostate cancer is a slow growing tumor, and it may take decades for a small low grade pc to spread and cause problems. The older you are and the more health problems that you have, the more that it makes sense to watch and wait (active survelliance), if your cancer is low grade (Gleason 3+3) and smaller in size. A second opinion seems reasonable.

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 5/10/2010 7:42 PM (GMT -6)   
I would be inclined as the others have said to get other opinions. It might be wise given your age and the fact you have suffered a stroke to consult with a radiation guy. Unless your prostate is oversize you would seem to be a prime candidate for brachytherapy(internal radioactive seeding). The internal surgery with open and robotic are much the same but obviously the abdomen is opened with open surgery which has a greater impact. Having said that though, those who had open did not take a great deal more time to recover. Given your stats I would not be making a rush decision ......... the biopsy results and PSA would seem to indicate you have plenty of time to decide your next course of action. Stick around and research, research, research.
Bill

Biopsy
4 of 10 cores positive for Adenocarcinoma-------bummer! 
Core 1 <5%, core 2----50%, core 3----60%, core 4----50% 
Biopsy Pathologist's comment: [/color]
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 
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 
PSA August '09 (2 year mark), <0.01 
PSA December '09 <0.01   PSA May '10  <0.01


www.yananow.net/Mentors/BillM2.htm


Never underestimate old people ............ you don't get to be old by being stupid.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 5/10/2010 9:16 PM (GMT -6)   
Ger, the first thing you have to do is get a second opinion on your biopsy slides. And, make sure the pathologist is someone who has lots of experience with prostate tissue. Pathology is an art, as well as a science and your Gleason score is an important factor in your decision. What you are looking for is the best expert you can find to verify what the first expert says: 3 + 3. If you can get a second opinion that agrees, that's one thing. If your second opinion says, as mine did, that it's not 3 + 3 it's 3+4 then, that's different. The second isn't any more likely to be right than the first --- assuming you have two good pathologists ---- but you need to know 'worst case' and factor that into your thinking. If 3 + 3 is your worst case, then at 68 I think you have a lot of options, and lots of time to decide.

In Canada, where I live, HIFU is an approved treatment, as it is in many other countries. In the United States it has not been approved by the FDA. I seriously looked at HIFU with Dr. Bill Orovan in Toronto, and if you have heart and stroke issues you might want to Google his Maple Leaf Clinic which is part of the Cleveland Clinic, in Toronto, based in Cleveland Ohio, and then talk to your doctor about it. One of the nice things about HIFU is that if it doesn't work all of your other options, including da Vinci surgery, radiation, etc. are still possible.

But first, get those slides reread. I'll be watching for more posts and more reports from you.


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
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4149
   Posted 5/11/2010 5:20 AM (GMT -6)   

Dear Ger:

It you haven't done so yet, please read Dr. Patrick Walsh's book, "Guide to Surviving Prostate Cancer" and Dr. Stephen Strum's book, "A Primer on Prostate Cancer".  Those will give you some basic foundations of knowledge.

Next, I would recommend that you definitely talk with a radiation oncologist and a prostate oncologist.  Your urologist is most likely a surgeon and most likely has given you a pro-surgery bias.  Prostate surgery is a big deal.  Just look through the various threads on this forum if you question this.  You need to research and understand all of your options before making a decision.  That includes asking questions, doing research and meeting with doctors who provide different  protocols for treatment for your situation.

Finally, whatever course you choose, you should make sure that you select a highly experienced doctor.  There are statistical studies that show surgical outcome is significantly better with doctors who have over 250 treatments than those with less.  There are still docs who are "learning" da vinci...let them learn on someone else.  I'm sure the same is true with brachytherapy...pick an experienced doc.

Good luck,

Tudpock (Jim)


Age 62, Gleason 3 + 4 = 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 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 5/11/2010 9:23 AM (GMT -6)   
Ger,
with a low grade cancer any local treatment, surgery, radiation, Brachytherapy, Cryosurgery or HIFU will all work equally well in curing the cancer. The only difference is in the side affects of the treatments.Do your research carefully as you will have to live with the side affects for the rest of your life. about 50% of the posts on this board are about dealing with the side affects of surgery. Read them carefully. Surgery has the potential for the greatests side affects and brachy and radiation have the least.
As to the question of robotic vs open; a recent survey of urologists said that most would choose robotic if they had a low grade cancer, but would choose open if they were Dxed with a high grade ca.
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


Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 5/11/2010 9:52 AM (GMT -6)   
There is not evidence that cryosurgery or HIFU are as effective as surgery or radiation overall; there is some evidence that cryosurgery is less effective, and HIFU doesn't have adequate data. However, in someone over 65, with other health problems, who has a low grade, small prostate cancer, the life expectancy may be the same will all options, including doing nothing.

The most important thing is to get several opinions, from different doctors, including those who don't do procedures. Also, don't use the internet as one of your second opinions.

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 5/11/2010 2:24 PM (GMT -6)   
With respect, I'd disagree with Postop's assertion that there is no evidence that HIFU isn't as effective as surgery. What there isn't is long term evidence. The treatment has only been around for something like a dozen years, so the 20 year numbers aren't there. And the numbers for what I now believe is third generation equipment are only a few years old. However, thousands, upon thousands, upon thousands of men have been treated with HIFU. There is a ton of evidence, and if you extrapolate results of zero PSA, of incontinence, ED, out it's a treatment that deserves some respect.

I am not suggesting HIFU is THE answer for anyone. But I do think it is a treatment PCa folk need to be aware of and investigate with open eyes --- cautious, but open.

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
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 5/11/2010 3:26 PM (GMT -6)   
Won't get in an argument. However, if low grade prostate cancer (the only kind that is treated with most HIFU) unfolds over decades, and the results of HIFU have only been studied over 3 to 4 years, that isn't proof that it is as effective as treatments that have been studied for 10-20 years, like surgery. All treatments, including no treatment at all, are about 100% effective over 3 to 4 years, so you can't "extrapolate" from the HIFU studies, any more than you can extrapolate that since no one dies from low grade prostate cancer 3 or 4 years after it's diagnosed that no one can ever die from it. This doesn't mean that HIFU doesn't work, only that it isn't right to say that it works as well as the other treatments--this just isn't known yet.

No more comments on this. Just find some expert MDs, and get your second opinions from them.

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 5/11/2010 4:17 PM (GMT -6)   
Postop, I'm puzzled by your statement that, "the results of HIFU have only been studied over 3 to 4 years, ...." HIFU for prostate cancer dates back to around 1997 and results going a long way back, and there are studies reported in peer review medical journals. And, HIFU isn't just a treatment restricted to low grade cancers. From my conversations with HIFU people, and reading, if surgery is an appropriate treatment, then HIFU is an option.

I'm sorry to read that there will be no more comments from you on this. There is a lot of fog for recently diagnosed PCa folk to wade through and I believe honest, open discussion such as we've been having here can be helpful to them to get to the facts. As my wife will be glad to attest to, I am not without my faults, and do sometimes get things wrong. On what I've said about HIFU I have a fairly high level of confidence --- but there have been times in my life when I've been wrong about things I was confident about. Ger42, after a stroke and perhaps cardiac problems, deserves to have the chance to investigate all good options. It seems to me HIFU might (and I say, 'might," he is the only one who can say) be an excellent option for him to investigate. I don't want to lead him astray, but I can't find reason in your comments about HIFU for him not to investigate this treatment as a possible, and reasonable, alternative.

One thing we can agree on is the need for the OP to get some expert MDs and get advice. Where we might differ is on how narrow a geographic lasso, if any, you and I might put around the definition of an expert MD.

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
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/11/2010 4:31 PM (GMT -6)   
Where does Ger live? Not sure its stated anywhere. If he lives somewhere where it is a viable option, then HIFU should at least be considered. If he is an American, he may take the position like me, that as long as a treatment is outside the safety net of the FDA, its not a doable option as long as its not approved in the US. If it were approved here in the US, I would have given it some consideration way back when I still had a prostate. Mute point now.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 5/11/2010 5:04 PM (GMT -6)   
OK, OK, sleepless, one last comment, but this is it, because, really, we are all amateurs here and we shouldn't be dispensing medical advice, just ideas and experience.

Prostate cancer is often slow growing. That means that if you study localized PC for a few years, many people will do well, no matter what the treatment is. To show that a treatment works, it's not enough to do a report giving the results on, say, 50 patients that are doing OK after 5 or 6 years of treatment. You need to show that they are doing better than a comparison group. The best comparison group is patients getting active survelliance, because you really want to know if the treatment actually works better than doing nothing. Also, you'd really like to do a study over about 20 years because it may take that long for PC to make trouble.

The only randomized studies comparing PC treatment to no treatment that I could find have been for surgery, and these only go out for about 12 years. Patients getting surgery have a bit lower death rate than those who don't, if they are <65 when treated. I also saw some randomized studies comparing radiation to surgery, and showing similar results, but that's about it.

There seem to be a lot of treatments for prostate cancer that are being used without much proof that they are as good as, or better than other treatments. Is robotic surgery better than the usual surgery, or just fancier and more expensive? Don't see randomized comparitive trials that you are less likely to have ED or incontience with robotic surgery. Is proton beam therapy as good? Unproven. Is HIFU as effective? Just see a few series of patients treated with it and followed for a few years, no studies comparing it in controlled trials to other treatments. It doesn't seem right to say that all these treatments are equally effective. It seems like there are a couple of treatments--surgery and radiation--that have been studied enough to show that they help some patients, and a bunch of treatment that sound like good ideas, like proton beam and HIFU, that might help, but haven't been studied enough.

I know that lots of people in this forum have strong feelings about certain treatments, especially if it's one that they've been through them, so I don't want to get into arguments. I think people should read this board for support, and to learn about other's experience, but they should go to professionals from different backgrounds to get advice, and not take the medical advice given here by us amateurs too seriously.
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