Can't make a decision

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pws1
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/7/2008 11:42 AM (GMT -7)   
Diagnosed Oct 15 2008 age 44 psa 5.7 gleason 3+3=6 I went to 2 local [Phila] Uro's, they both recommended DaVinci another Dr in Nj said open RP is better. It all seems to be what ever their selling. I have read a ton of your posts and its been very informative and frighting at the same time, but still can't decide. I had DaVinci surgery lined up for Dec. 9 at Fox Chase Phila but got cold feet and postponed. I have a consultation with Phila Cyberknife on Dec. 8. I have talked to Dr. Scionti of HiFu Care Center and that sounds tempting but ?????????

Sam Benton
Regular Member


Date Joined Dec 2008
Total Posts : 35
   Posted 12/7/2008 12:44 PM (GMT -7)   
I had DaVinci on Nov 3rd at the Center for Cancer Care in Goshen Indiana, and I'm glad I did. I tend to be somewhat impatient, but I have to admit that I am healing fast. No prostate surgery is going to be easy, but DaVinci seemed a lot less invasive and the recovery time is minimal. My Gleason score was 3+3=6 as well and I wasn't willing to wait at age 57. It is scary but the alternative was scarier to me.

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 12/7/2008 12:46 PM (GMT -7)   
Take a week off and don't even think of Pca or try not to. There's no rush most here have plenty of time to choose a treatment after diagnosis. You don't want to be one of those who panics then later regrets their decision. There are no do overs. I went from leaning towards surgery, to brachytherapy to finally signing on with a new clincal research study as another alternative. TAKE YOUR TIME and then when you decide take a few more days off to reflect on that. Then go ahead with whatever you choose without looking back. Btw HIFU for those in the US will not be paid for by insurance. Currently we have another wave of new people who seem to panic and must choose right now!!!!!! Don't be foolish study to empower yourself then reflect on all the side effects. There are no do overs as I said. Don't let others decide for you. You're the one who has to live with your decision more than anyone else.
Diagnosed 10/08/07
Age: 58
3 of 12 @5%
Psa: 2.3
3+3=6
Size: 34g
T-2-A
 
2/22/08
3D Mapping Saturation Biopsy
1 of 45 @2%
Psa:2.1
3+3=6
28g after taking Avodart
Catheter for 1 day
Good Candidate for TFT
(Targeted Focal Therapy)
Cryosurgery(Ice Balls)
Clinical Research Study
 
4/22/08
TFT performed at University of Colorado
Medical Center at Denver Fitzsimons Campus
Catheter for 4 days
Slight soreness for 2 weeks but afterward
life returns as normal
 
7/30/08
Psa: .32
 
11/10/08
Psa.62
 
April, 2009
Final Biopsy scheduled to
complete clinical research study 
 
 
 

Post Edited (realziggy) : 12/7/2008 12:50:06 PM (GMT-7)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4019
   Posted 12/7/2008 1:31 PM (GMT -7)   

Dear PWS:

I thought realziggy's post was excellent and I could not have said it better!

As long as you are taking the time, make sure you have looked at ALL options.  You didn't mention proton beam or brachy...you should look at them as well.  It's hard to get a line on proton beam as there are only 5 US centers that do it, but their web sites are helpful.  As for brachytherapy, or for that matter other radiation options, an experienced radiation oncologist should be on your list.  That may not be your choice, but you should look at it for peace of mind before your final decision.

BTW, my brachy is next week...I'm ready and sure it is the right decision for me.  If you want more info about what I went thru leading up to this, there is a separate topic, "Tudpock's Brachytherapy Journey Part I"...maybe you'll find it helpful...not just because I chose brachy, but because of the process...

Good luck.


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
27cc
Brachytheraply volume study done on 11/14/08
Brachytherapy scheduled December 9, 2008


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 12/7/2008 2:25 PM (GMT -7)   
Hey PWS,

Yes, look at all the options but move forward. The key to surviving cancer is early detection followed by aggressive treatment. Its nothing to play around with as theose who ended up with stage III or IV cancer will attest. I've been through this routine twice and am now in remission for both cancers. This result is due to a dilegent family doctor who found the cancers at stage II and to excellent surgeons who got rid of them for me.

Got cancer? Get rid of it!

Jim
Age 74. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + 1000 mg L-Arginine + .03 cc Trimix = Excellent Results
PSAs from  1/3/07 - 7/17/08 0.00. 
Next PSA test on 1/28/09
Lung cancer dxed on 5/16/08.  Surgery on 6/25/08  T1N1M0 - Stage IIA  Finished 4 cycles of chemo on 11/7/08.
CT scan on 12/2/08 - in remission!!!
Next scan on 2/26/09.
"Patience is essential, attitude is everything."


lastcowboy42
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 12/7/2008 3:30 PM (GMT -7)   
 Hello 
 I was the same way  when I got the news , I did look at the options  and out comes of them all  and for my case  with the  cancer taking almost 3/4  of my prostate I took the  open rp for the sake that they may spare the one good nerve I had left , but you need to take a breath  and look at them all make sure you take the time and find the one that best suits  you   then take the step , I had my open RP on November 18 2 days after comming back from 11 days of elk hunting  :{) I am healing up very nice , My oc used staples  but I do leak  use the pads and depends   but from what I have found on this great site is I and most of us will for  awile .
 I am just happy I am in the here and now  to watch  my  3 year old girl litle girl grow up , though I may have many hurtles to jump  and some that I may never get over   I look at it now  and take every day as it comes  and would rather be smalling the roses then looking at the  roots  so to say  .
 so take some time off from it all enjoy life  and then look at  all t he options  you  have.
 I wish you the best .
 I am 42 years  young
Psa 11.6
gleasen 4+3=7
Catscan-Neg but for a cyst on liver
Bone scane - Neg
11 out of 17 bio tests came back pos full rt side agressive cancer lft side  core  had 2 bios  pos
had the open RP on Tuesday November 18th of 2008 at 7:45  am , finished at 1:30 and took the 3 pts of blood I gave .
 At Kaiser Sunnyside  in Oregon
Performed by Dr Matthew Forsyth
 Came home on 11-21 , cath and staples out on 12-01
now the real work begins
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 12/7/2008 4:00 PM (GMT -7)   
As far as surgery is concerned, I don't think there is much difference between RRP and DaVinci -- much more depends on the skill of the surgeon using the equipment. I had RRP, and feel my recovery was comparable with many of those here who had DaVinci.

With a Gleason of 6 (low) you have many other options available to you, including various radiation treatments. Watchful waiting is also an option, but that greatly depends on your attitude to risk, and factors such as whether you want to father any (more) children.

It's a tough decision, but good luck with whatever you decide.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 12/7/2008 4:03 PM (GMT -7)   
pws1 said...
Diagnosed Oct 15 2008 age 44 psa 5.7 gleason 3+3=6 I went to 2 local [Phila] Uro's, they both recommended DaVinci another Dr in Nj said open RP is better. It all seems to be what ever their selling. I have read a ton of your posts and its been very informative and frighting at the same time, but still can't decide. I had DaVinci surgery lined up for Dec. 9 at Fox Chase Phila but got cold feet and postponed. I have a consultation with Phila Cyberknife on Dec. 8. I have talked to Dr. Scionti of HiFu Care Center and that sounds tempting but ?????????
If you feel that your physician is promoting the option he / she specializes in, you might benefit by visiting a physician that is part of a large group of urologists.  My doctor is part of a large medical group in San Antonio Texas.  They have surgeons that specialize in all of the current treatment options.  I first saw a uro, in that group, that specializes in open and Cryo.  He laid out the pros and cons for each option.  He suggested that I speak to the doctor, in the group, that specializes in the da Vinci robot.   In his opinion, that gave the best chance for a successful outcome in my case.  My point is that you might benefit by visiting a physician that is part of a large group to take advantage of all of the options available.  Each case is different and may respond to one treatment option better than another.  You want to stack the odds in your favor and not settle for a treatment option just because that is the one being sold by the doctor you visit.
Age 50
Pre - Op PSA, 4.3
Gleason 3+4=7
Stage T1C
da Vinci Prostatectomy 8/1/08
No issues with incontinence since day 1 after catheter removal
ED, need a little help from Levitra
First post op PSA 11/11/08, 0.00


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 12/7/2008 10:51 PM (GMT -7)   
All of us have a tendency to push for the same way we chose to go, and if you think about it that is encouraging because it basically says there are no wrong methods of cure. Now after saying that I will push for my choice - I cannot see why if you are going to choose surgery you would not go DiVinci other than a local choice issue related to the skill or experience of the doctor. If there is an experienced open surgeon and no DiVinci experienced surgeon I would probably go with the open guy, but if experience is equal among surgery choices and DiVinci is available, I cannot see why not take DiVinci, since it is less invasive an provides consistly equal results. It comes down to what is available to you, and your comfort level with the physcian of choice.

These are all tough calls, but again there are no wrong answers - just choices among good procedural cures.

RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.1 10/30/2008


Mahalo
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/27/2008 6:24 AM (GMT -7)   
RBincountry
I am 64, diagnosed with 5.1 PSA, Gleason 6, T1C, biopsy 14 cores. I have been leaning toward brachy seeds. Divinci has been on my mind as a possible better alternative. Why did you decide to switch to Divinci.
Mahalo

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 688
   Posted 12/27/2008 9:10 AM (GMT -7)   
Mahalo,

I'll throw in my 2 cents since I also decided on DaVinci:

What I liked about the 2 surgeons I talked to is that they both took pains to try to not sell me on their specialties, which were open RP and DaVinci. It helped that they know and respect each other. The main DaVinci advantage is that you generally lose less blood, and the openings in your body are smaller, so both of those contribute to a faster recovery time. But, and they both stressed this, your long term survival rates are about the same. Also, if the open RP surgeon is highly skilled, the recovery time will be somewhat better, and can approach what you get with DaVinci. Depends also on the condition of the patient too of course.

A bonus for me was that the nursing care in the hospital I chose was much better than the nursing care in the other hospital--we know from experience, as my wife had surgery there a number of times. So the surgeon and surgery are most important, but if those are about equal, good nursing care can really make a difference. In case you don't know what I mean: Not so good means the nurse is never around and doesn't always come when you call; when they do come they may get interrupted and leave you before finishing giving your pain med or whatever; always seemed rushed and overworked. Good was that the nurse came by so often that I never needed to use the call button; the nurse took the time to explain what they were doing and answer questions.

At my Gleason level of 7, radiation is still an option that can follow surgery if necessary (and still might be for me, but I hope not). I didn't talk to any radiation oncologists, although both my surgeons encouraged it. I just read about it online and in books.
DJ

Age 53
PSA 2007 about 2
PSA 2008 4.3
Diagnosed September 2008.
Biopsy: 6 of 12 cores positive
Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter removed on 7th day, replaced on 8th day, removed again 14th day following negative cystogram
pT2c
lymph nodes negative
"microscopic margins"


Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 12/27/2008 9:23 AM (GMT -7)   
Ditto everyone above.  In the long run it seems lika coin toss as to which treatment to go with, but as i'm sure you've read, there are options.  The fine people here have seen it all and report their experiences(good and bad).
 Take your time. You don't need to be diagnosed one day and treat it the next.
 
 Fortunately, at your stage, this is a slow moving disease.
 
 Good luck with whatever you decide to do and let us know.
Bob
 
 AGE:57
 Dx: October,27(the day after my birthday)
 Psa 14.5
 Gleason:(4+3) 7
 Bone scan:Negative
 Cat scan: Negative
 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.
 Confined to prostate.
 DaVinci scheduled for Jan. 19, 2009.Dr. Scott Montgomery, KC Urology,
Shawnee Mission Med. Center. Kansas


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 203
   Posted 12/27/2008 9:35 AM (GMT -7)   

Hi ,

as a result of lots of readings and evaluation of my research...seems like that the # 1 priority and probably most important factor in PCA surgery is the surgeon skills  and experience...do your  reasach well for those surgeons that perform many of those procidures (either RRP or DaVinci) and pick the best one who had best results showing on his track records.. (it said that with such surgey 1000 + procidures will qualify a surgeon with suffcient experience)

i had a RRP and recovering wel i should say , no continance issues from day one of cathetar removal , ED is a long battle but progressing well (i am at 18 months post  and i can perform sexual relations  especially with  little help from the blue little pill and hope it  is only going to get better than the 80-90% )

seems to me that davinci is the better way to go , if i had my choices again i might have done that instead and maybe do a better research of the most skilled surgeons in that field ....

 

Good Luck and keep us posted ..

hapy Holidays to ALL

GB smilewinkgrin


April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 203
   Posted 12/27/2008 9:38 AM (GMT -7)   

PS

Being that young i would think your uros recomandation is the right one..  get rid of that prostate all together   and conduct a healthy life style , your recovary chances are much greater than being older , especially if you are in a general good health otherwise...

 

Good Luck

GB


April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 12/27/2008 9:42 AM (GMT -7)   
I agree with DJ above, a hospital with good patient care and a great nursing staff must be factored in a surgical decision. I went to St. Francis here in Greenville, SC, year after year, they are voted the best patient care in the whole state. Had a major operation there about 10 years ago, and was pleased when my urologist/surgeon practiced there. never had to use a call button, first class care from start to end. I also agreed to a very common view, that it is much better to have salvage radiation after surgery, then to have salvage surgery after radiation. that seems to be a very proven fact in the pc cure world. So like DJ, with a Gleason 7 and high psa, I feel I still have a big gun waiting to help me, i.e. radiation, if I have reaccurance.
Just my take.

David in SC

And yes, no matter what, take all the time you need, its your body, your cancer, your life. Don't be falsely bullied into a treatment.
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerve sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 


jerseycity
Regular Member


Date Joined Nov 2008
Total Posts : 123
   Posted 12/27/2008 10:46 AM (GMT -7)   
If surgery is your decision than the choice is between robotic or open. I had open on October 1st this year with no ill effects. Yes there is a larger incision. I read a study that showed there was a 3 fold increase in the need for follow up radiation after robotic compared to open. This is temperd though by the experience factor. The higher volume surgens in robotic had a lesser need for follow up . It also stated that the experience factors was not noticeable after 250 surgerys. My doctor had done more than 1,000. Yes at 13 weeks I have leakage and ED but that is normal. A real benifit to open is that the surgen can actually get his hands on prostate and surrounding tissue to look for signs that may require more tissue removal. I had decided on robotic but changed my mind to open. No regrets. A great book to read is "surviving prostate cancer" by Dr. Patrick Walsh head uro at John Hopkins.  was off work for 5 weeks but am back full time and work out 4 times a week. Good luck. This site will give you straight forward information on all the options. Carry On.

 3-17- 8 went to Bruce Springsteen concert , great time
3-18-8 routine exam
3-19 doctor called said psa was elevated
what's a psa?
referred to Uro, had several more blood tests.
PSA steady at 4.75
biopsy  June 08 , 12 cores, 4 on left confirmed , right clear
gleason 3 + 3 T1c
research time.
decieded on open RP, Head of Uro  is my Doctor
Surgery done 10-1-8 by Dr See at Frodoret Hospital in Milwaukee
Cathater out 10-13 no problems
Post op,  organ confined, gleason up to 4 + 3, all clear margins
T2c 20% volume, very good outcome I feel
Incontinent and ED.  Time will tell, was told all nerves  saved.
back to work 11-5-8.
 
Rich man in a poor mans shirt.


glabers
Regular Member


Date Joined Nov 2008
Total Posts : 31
   Posted 12/27/2008 10:57 AM (GMT -7)   
pws - I had davinci robotic surgery on 11/13, and I haven't once looked back. My surgeon and op-room staff were great. Mt. Sinai hospital in NYC was ideal for me; my wife even got us a private room/suite and she stayed the night comfortably. I was walking around the same day. I'm awaiting on my 1st post op PSA test results and I'm confident of undetectable results. I Gotta get in that zero club.

In addition to 2 surgeons I consulted with, I saw a radiologist. Even the radiologist recommended surgery. He was younger than I, and when I asked what he'd do, he responded with "If I were you, I'd have surgery asap". That sealed it for me. Radiology is a good option, however, there's no cure data past 18 years. Plus, I'm told that radiology does similar harm as well - with both incontinence and ED. For me, I wanted it out, not nuked! The best way to get it out for a hoped-for total cure is laproscopic-robotic surgery and it's the best method for nerve sparing. Sparing the nerves that attach to the prostate (like ivy to a wall) is key for minimal ED.

Everyone has told you valuable things. My recommendation (when you're ready of course) for your age and numbers is Davinci surgery. Get that big-c outta you. I should add; my initial biopsy results were 5% of 20 samples in August; however, my post op biopsy numbers from Nobember were startling. It went to 75% of samples when they biopsied the removed prostate. The Dr. told us that my strain was a fairly aggressive so it was good to get it out when I did. My Dr. told me yesterday that my recovery is going great. My incontinence is minimal & getting better each passing day.

Additionally, and this is a biggy for me, and most others; I've been able to achieve an erection with wifey stimulation; granted, not like it was before, but probably 3/4s of where I was before surgery. And, this was only 5 & 6 weeks out. Over time, I'll get better & better. I prepared myself for the worst. My goal was to do what was necessary to survive. My wife told me: "I care only about your health and you being here for me for a long time; anything beyond that is gravy". Well, I've had gravy twice already :) Woo hoo!!

It was a tough decision, but I'm confident I made the right one. I will dance with my 14 year old daughter on her wedding day.
Diagnosed:  8/24/08, age-47
Father died of prostate cancer at age 72
PSA 1.5 early 2007, 4.5 mid 2008, all remedies tried & reduced to only 3.2, uh oh.
Biop - 2 positives of 20 samples
Gleason - 3+3
RRP - 11/13/08 via Da Vinci by Dr. David Samadi, Mt. Sinai Hosp. NY
Post op biopsy - 75% of samples positive for cancer, Post op Gleason 3+4
some lymph Nodes tested, all negative
all nerves spared - I'm told
Catheter in for 1 week, using 1 pad a day. 
 
 
 
 
 


skapod
Regular Member


Date Joined Nov 2008
Total Posts : 35
   Posted 12/27/2008 3:49 PM (GMT -7)   

Hi PSW, I read the above posts and agree with everyone that you need to do all your homework and find the best method for you.  The only thing I don't agree with is taking your time.  My husband (glabers) was told, and I confirmed through research, that men as young as you and my husband that are diagnosed with prostate cancer usually have a more aggressive form of the cancer. Also, if you decide to have radiation therapy, of any kind, the option to then have the radical surgery is basically null.  The radiation can do damage to your colon, bladder, etc, and the chances of incontinence, both urinary and bowel, are much greater. That information was given to us by a radiologist that we consulted with, the same one that told my husband he would recommend having the surgery because of his age, and numbers.  If God forbid, for some reason, all the cancer wasn't removed after the radical prostatecomy,  whtether it be the DaVinci method or open, you still can opt to have the radiation to kill anything that might be remaining.  It doesn't work the other way around, you can't opt for surgery after radiation.

If I read your post correctly, you live in Philadelphia.  I'm adding the link to the doctor we used, Dr. Samadi.  He is one of the leading surgeons in Manhattan that performs the DaVinici method.  He has done over 1,500 robotic surgeries and has experience in both open and robotic.  He also is proficient is laproscopic surgery, and teaches other surgeons how to perform the DaVinci method, which is a plus.   My husband had surgery scheduled with another surgeon when I came upon Dr. Samadi's website by chance.  After consulting with Dr. Samadi we were convinced that he was the doctor we wanted operating on my husband.  He took as long as we needed to answer all of our questions and concerns.  He even responded to an e-mail I had sent him about a week before our consultation.  I had sent him and e-mail at 11:45 on a Tuesday evening asking him if there was anything I should be looking at before our visit and I gave him my husband's numbers and history and also told him that my husband was considering radiation. He e-mailed me back at 5:45 the following morning with a link to a website to look at and also a website to view him doing an actual robotic surgery.  On top of that while we were waiting to see the Dr. another patient that was just seen by Dr. Samadi was leaving.  We found out later on the he travelled all the way from Egypt with his son for his consultation!

My point is, you are not that far away from Manhattan, living in Philly.  Our thinking was that if we are going to pick a surgeon, why not go with the one man that teaches other surgeons how to peform the DaVinci Method? We live in upstate New York, I don't know where in Philly you live, but if it was us, I would definitely make the trip.  I was able to stay in the hospital with my husband on 11 West, it was like a hotel.  Unfortunately it wasn't covered by insurance, and believe me we are by no means well off, but to me it was money well spent. It gave my husband and I piece of mind knowing I was there. 

The website for Dr. Samadi is:  http://www.roboticoncology.com/  he also has the webcam operation on there now.   (P.S.  I'm not getting a commission for the recommendation.) tongue

Good luck to you in whatever you decide, our thoughts and prayers are with you.

Post Edited (skapod) : 12/27/2008 3:52:51 PM (GMT-7)


chris nz
Regular Member


Date Joined Sep 2007
Total Posts : 33
   Posted 12/27/2008 5:13 PM (GMT -7)   
my 2c's worth. I was dx 6.1, 3+3, 1 of 8+, in 2003, chose active surveillance. earlier this year had 2nd biop., 1.8, 3+4, 3 of 10 +. Eventually decided on Brachy because of virtually no recovery time and the surgeon has been doing the procedure for 8 years with the same team, regularly goes on refresher courses, and does 8-10 procedures once a month. I did ask him if he was any good, said he'd done over 700 procedures without any complaints. Good enough for me. moral:- don't panic, choose well it is your decision.
regards chris nz
Dx Nov '03, age 61, 1 of 8 +, 3 + 3, PSA before biopsy 6.5.
after biopsy PSA went 10.5 and stayed there.
Tried a lot of the can't fail 'cures'. Found 'Prostasol' a version of PC Specs.
PSA dropped to less than 1.
Still tried other supplements but reverted back to 'P'. [ a herbal estrogen.] Had problems with hereditary Deep Vein Thrombosis, now on blood thinner.
March '08, second biopsy, 3 of 10 + [10-50%], 3 + 4, PSA 1.0. T2A.
Bone scan didn't show much, bone density showed early osteo in places.
Had Brachytherapy Aug 23 08. 75 seeds, started work again 2 days later
PSA after 6 weeks 7.8
PSA after 3 months 4.2, everything still working well, absolutely no problems. next check in May '09


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 203
   Posted 12/27/2008 6:38 PM (GMT -7)   
skapod said...

 

robotic.  He also is proficient is laproscopic surgery, and teaches other surgeons how to perform the DaVinci method, which is a plus.   My husband had surgery scheduled with another surgeon when I came upon Dr. Samadi's website by chance.  After consulting with Dr. Samadi My point is, you are not that far away from Manhattan, living in Philly.  Our thinking was that if we are going to pick a surgeon, why not go with the one man that teaches other surgeons how to peform the DaVinci Method? We live in upstate New York, I don't know where in Philly you live, but if it was us, I would definitely make the trip.  I was able to stay in the hospital with my husband on 11 West, it was like a hotel.  Unfortunately it wasn't covered by insurance, and believe me we are by no means well off, but to me it was money well spent. It gave my husband and I piece of mind knowing I was there. 

The website for Dr. Samadi is:  http://www.roboticoncology.com/  he also has the webcam operation on there now.   (P.S.  I'm not getting a commission for the recommendation.) tongue

Good luck to you in whatever you decide, our thoughts and prayers are with you.

Hi again
i must concure and agree fully with skapod, i have heard about Dr. Samati and read some of the osts here that he had done (with a much faster recovery time than expected .. actually amazing  time table of returning to full continance and potency) i only wish i had found this site and done my resarch  before my surgery just like you are doing.... i would have probably chosen to go with DaVinci and Dr Samedi....as  his track record is amazing, but again i can not complain much as my recovery is better than others just takes longer as i had done and open surgery ....good luck again and keep us posted *
 
GB smilewinkgrin
PS Skapod i did not see any info on your profile for your hubby recovery would like to hear the details...
April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!
 
UPDATE AS OF Dec 2008 (18 months out)
 
PSA  stil Undetectble!!!!
No continance issues!!!!
ED Mostly  getting better  with oral meds and the right woman  = good  sex
80% without any help   and 95% with oral Meds ... 100% with  VED
hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/27/2008 7:18 PM (GMT -7)   
All of good replies from the brotherhood of PCa (ziggy-right on point). My two cents to add to the mix, did you get a copy of pathology report, did you consider having it reviewed by Bostwick, Epstein and those specialists on pathology???? It might be worth your efforts and probably takes 1-2 weeks perhaps to know if the Gleason score or other parameters that might show change from the original report. It is said that Dr. Walsh draws his line at Gleason 7 as to patients he wishes to do surgery on, of course he has the luxury of being well sought after and probably wants to keep his cured list looking as perfect as is possible, so he can be ultra selective. I don't know where the 'line' is and who does, so each man has to weigh it all out and make his best judgement, only you have to live with the results and/or side effects (not any docs or friends, relatives etc.)
Did you look into nomograms, statistical programs for kind of like odds you might face (it is only a guideline)?
Your age is a factor to consider in this mix also. Hopefully you have insurance coverage for whatever, also. Another consideration for treatments protocols, especially for some folks. Some patients could be cured via many different avenues/protocols if that is any concellation to you right now.

Get the book A Primer on Prostate Cancer (maybe 2nd edition-my picture is on the inside cover-LOL)

Peace be with you and you have time to look at every avenue

skapod
Regular Member


Date Joined Nov 2008
Total Posts : 35
   Posted 12/27/2008 8:17 PM (GMT -7)   
GBINAB:  Here are my husband's stats:
Diagnosed:  8/24/08, age-47
Father died of prostate cancer at age 72
PSA 1.5 early 2007, 4.5 mid 2008, all remedies tried & reduced to only 3.2, uh oh.
Biop - 2 positives of 20 samples
Gleason - 3+3
RRP - 11/13/08 via Da Vinci by Dr. David Samadi, Mt. Sinai Hosp. NY
Post op biopsy - 75% of samples positive for cancer, Post op Gleason 3+4
some lymph Nodes tested, all negative
all nerves spared - I'm told
Catheter in for 1 week, using 1 pad a day. 
 
Since surgery he is wearing 1 pad a day, with some spotting.  The day catheter was removed was able to stop and start urine flow.  The Dr's assistant was very pleased.  (He did the kiegel exercises before surgery and has continued since).  Able to hold urine for the most part but when need to urinate comes needs to go.    Nerves were spared and he has had 2 usable erections since surgery 6 weeks ago.  First one was 5 weeks after surgery, not 100%, but good enough to get the job done smilewinkgrin .  Had his first PSA test done on Friday, waiting for results.  Dr. says he is healing nicely and he is a very lucky man given the fact that 75% of the samples taken after prostate was removed were postive for cancer. He was walking a few hours after surgery, and continues to follow doctor's orders of not staying sedentary for long periods of time.  Motion is key to recovery as well as kiegels.
 

Post Edited (skapod) : 12/27/2008 8:21:58 PM (GMT-7)


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 672
   Posted 12/28/2008 1:58 PM (GMT -7)   

Hi PWS,

I'm pretty new here.

Since being diagnosed Dec 3, I've looked at about every treatment option available. I'm now going through the same for the 2nd time since the amount of info here and online can be daunting. I've talked to my Uro twice, my GP several times and here is where I am in my research at this time...and, these are my opinions only:

1) da Vinci robotic RP at University Hospital in London, Canada...Dr. Joeseph Chin.. Unless I'm wrong, London, Ontario and Montreal, Quebec are the 2 centers of excellence in Canada for robotic.  There are even more in the U.S. I have contacted Dr. Jean Joseph's office in Rochester, NY, also. I have not yet seen Dr. Chin. I am leaning towards this for a couple of reasons. While getting the cancer out is the priority (#1), I am concerned about recovery time, incontinence and ED (married my dream girl). I run a small biz (5 great employees) and I'm a working boss...practical considerations. With either robotic or open, there is a good chance that subsequent radiation or other treatment can be very effective, if needed. If anyone has experience with this center and doctor, please reply.

2) Proton Treatment at Loma Linda in southern California. I have had initial talks with staff there. This looks like an effective treatment and this center has treated many people. While methods are improving and results are impressive, there is still the issue of collateral tissue damage to the bowel/bladder (etc) from radiation exposure. This could make salvage surgery difficult at a later date...and it's not covered by many insurances...certainly not mine. If anyone has specific experience here, please reply.

3) HIFU, while experimental in the U.S. is offered in Toronto. It also is not covered by most insurance...including mine. Collateral damage to surrounding tissue could make future surgery as difficult as with any radiation treatment. Some advocates consider this an effective primary treatment. Both my GP and Uro considered this a salvage option. Those with experience please post a reply.

4) Cryo. Same potential side effects as radiation, HIFU and Proton therapy. Anal fistula, bowel and bladder incontinence, ED...all several years down the road. My GP and Uro viewed this as a salvage option more than a primary treatment. Covered by some insurance.

5) Photon Radiation...same potential issues as with 2), 3) and 4) above. This comes in various protocols and I haven't found much about Cyberknife and how it fits here...yet.

6) Hormone Therapy I think is for more advanced cases and sometimes used while waiting for surgery for those eligible. There are side effects that my wife and I have discussed...loss of libido, ED and mood swings, equiv of male menopause in some cases.

While I am leaning towards an RP, hopefully robotic, I am still learning and researching. It's a difficult journey and I've only just started mine. What might seem the best option for me, may not suit another. I haven't made a final decision yet. One point that seems clear to me at this time is that if you have surgery first, all the other treatments are good candidate secondary or salvage options should PSA levels rise or metastasis occur. 

You need to do your own research with doctors, support groups, this forum and the vast resources out there to pick the best option for you...and for all of in early diagnosis. The veteran posters here have a wealth of experience.

I'll be starting my 3rd pass through all available treatments in a couple of weeks. Hopefully, I'll be in a position to make the call that's right for me.

Good Luck,

Mikey

PS: My 1st grandaughter was born at 3:10 pm on December 24. Mother and daughter healthy and home 24 hours later.

  


 
Lower left groin hernia; mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months (Nov 07-Jun 08) for diagnosed prostatitis.
PSA start of 2008: 5.3
PSA June of 2008: 7.3
6 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: Negative
 
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes
1) 30%, GS 3+3, perineural invasion identified
2) 40%, GS 3+3
3) 60%, GS 3+3
4) 65%, GS 3+3
5) 30%, GS 3+3
 
Open RP recommended. Looking at nerve sparing da Vinci in London, Ontario.
Wonderful wife...and 1st grandchild on the way.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 12/28/2008 2:53 PM (GMT -7)   
Mikey, you thought process through this sounds great to me, making different passes on all the options on the table. Some, and you probably already know for you, just don't make sense. And I don't say this to make you feel bad, but all options have their own risks, side affects, etc, and some of it, as I think we have all learned after the fact, you really don't know how you will do till you are on the other side. You can see that from the myriad of problems here with the men, sometimes the part that should be hard is easy, and the easy part is hard, i.e. can't believe I have been on a cath. now for about 44 days when most men have them out in 1 to 2 weeks, and I am praying if it comes out in the morning, that will be that this time, and I can move on with my recovery. By the time you make another pass or two, I think you will focus in what is best for you, and your situation. With a good attitude like that, a supportive wife and family, a good medical team, you will do well, and then you will be able to live with your particular decision with a clear conscience.
Good luck in your process, you are doing well.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerve sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 672
   Posted 12/28/2008 3:33 PM (GMT -7)   

Thanks Dave in SC,

My very first post was basically "scared crapless".

My GP and Uro have both treated radiation and others (RP surgery, Brachy, IMRT, Proton, Photon, and others). Their experience is for the younger men to get an RP. Both have treated radiation, 10 years after the fact, and have told me of all the bowel, ED and QOL issues that happen after radio therapy...including a guy here from California.

Again, it's what you chose to do. Personally, I still pee myself thinking about this.

A shi**ty disease.

Merry Christmas and Happy New year!

Being Dx with PCa and 1st grandchild in same month is daunting.

Mikey


 
Lower left groin hernia; mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months (Nov 07-Jun 08) for diagnosed prostatitis.
PSA start of 2008: 5.3
PSA June of 2008: 7.3
6 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: Negative
 
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes
1) 30%, GS 3+3, perineural invasion identified
2) 40%, GS 3+3
3) 60%, GS 3+3
4) 65%, GS 3+3
5) 30%, GS 3+3
 
Open RP recommended. Looking at nerve sparing da Vinci in London, Ontario.
Wonderful wife...and 1st grandchild on the way.
 

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