50 Year Old Husband Just Diagnosed with Prostate Cancer

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diamonds3
Regular Member


Date Joined Jan 2011
Total Posts : 112
   Posted 1/31/2011 9:27 PM (GMT -6)   
I was hoping that some members would give us names of some oncologists who could give us some unbiased recomendations for treatment It seems that surgical oncologist recommend surgury and radiation oncologist recommend radiition.
Also, we need some recommendatons for the best surgeon in the Philadelphia, Baltimore or N.Y. area as well as the best type of radiation and centers in the Philadelphis area. I also think we need someone to give us another pathology report.
My head is spinning, I'm sick to my stomach and I'm trying to put on a brave face for my sweet husband.
Jan 2010 PSA .8
Nov.2010 PSA 4.2
Jan. 2011 Psa 4.1
Nothing felt on DRE
Biopsy Jan. 21
50-60% Positive in both lobes
Gleason 6
Bone Scan and Cat scan are tomorrow
 

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 977
   Posted 1/31/2011 9:53 PM (GMT -6)   
Hi Diamonds, very sorry about your husbands diagnosis. I know it's difficult, but take a breath and try to relax. You have some time to figure this out. I am in NE and can't help with specific doctors. I'm sure others will weigh it. You can't do better than John Hopkins or Memorial Sloan Kettering in NYC. You should get a second opinion on biopsy from Epstein at John Hopkins if possible. BB

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/31/2011 10:05 PM (GMT -6)   
Hi diamonds, and welcome. With in info you've posted, your husband's case has a very high probability of cure...relatively low PSA, no DRE, low Gleason. Perhaps you could re-state your comment about "50-60% positives in both lobes"; I wouldn't want to speculate, but I haven't heard it stated quite that same way...I could think if two things that might mean...how is it written on his biopsy report?

Anyhow, with those low numbers, it is very unlikely that the bone scan or CT scan will find anything at all...in fact, the current American Urological Association "Best Practices" guidance is to NOT prescribe these scans with such low numbers since they as so highly unlikely to find anything.

You will find the very best cancer care at the NCCN's Comprehensive Cancer Centers. I posted a list of them in THIS thread on 9/26/10, but here's the ones in your area:


* Maryland: Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (Baltimore, MD)

* New York:
o Herbert Irving Comprehensive Cancer Center of New York-Presbyterian Hospital, Columbia University Medical Center (New York, NY)
o Memorial Sloan-Kettering Cancer Center (New York, NY)
o Roswell Park Cancer Institute (Buffalo, NY)

* Pennsylvania:
o Abramson Cancer Center of the University of Pennsylvania (Philadelphia, PA)
o Fox Chase Cancer Center (Philadelphia, PA)
o University of Pittsburgh Cancer Institute/UPMC Cancer Centers (Pittsburgh, PA)

best wishes...
 
 
 
added later in edit:
By the way, your husband's clinical diagnosis sounds very similar to mine:  relatively low PSA, Gleason 6, no DRE, but too many cores and too much % to consider Active Surveillance as an option.  I was 49 when diagnosed 2 years ago.

Post Edited (Casey59) : 1/31/2011 8:11:23 PM (GMT-7)


diamonds3
Regular Member


Date Joined Jan 2011
Total Posts : 112
   Posted 1/31/2011 10:14 PM (GMT -6)   
Dear Casey,
My husband wasn't sure if the Dr. said 8 of 12 were positive or 11 out 16.
He said that cancer was found in both lobes of the prostate. Thanks . Can you recommend an excellent surgeon?

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 7649
   Posted 1/31/2011 10:27 PM (GMT -6)   
diamonds,
Welcome to our site. We'll tell you to do the same as we all did ~ get a copy of that pathology report. It's important. And you probably want the slides from the biopsy reviewed again for a second opinion.

Surgeon credentials for me require a surgeon with over a thousand procedures. If a doctor does open or robotic you want the experience to be on the method he will use on your husband. This is very important. Some doctors have a lot of surgical experience but might be new to the robot console.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1251
   Posted 1/31/2011 10:46 PM (GMT -6)   
Hi Diamonds, it's awful news when you're first faced with it, but from what you tell us, as BB and Casey say, the numbers and news you've shared look good. Good in the sense that you can reasonably use the "C" word all us PCa guys love: CURE.

I vote (strongly) in favor of getting a second read of your husband's slides. And, if you can't organize one of the 'big name' PCa pathologists seek out someone who reads lots of prostate tissue and who surgeons and urologists like --- the pathologist they'd want to read their prostate slides.

As you may know, the Gleason score is made up of two numbers, each a ranking of abnormal prostate tissue. The first number is what is most seen, the second number is the next most common abnormal tissue. A Gleason 6 is 3 + 3. Anything less than 3 is just abnormal, not called cancer. The pathologist is saying the tissue is abnormal enough to be low grade cancer and telling you there's no sign of mid grade, or high grade cancer. That's good news. As you can see below with my stats, I was predominantly low grade, but I had some mid-grade nasty cells making me a Gleason 7.

No sign of cancer is the best possible news. A Gleason 6 is the next best thing. I don't want to downplay the fact this sounds like a significant tumor, but it's important you understand its low ranking.

You say your head is spinning and you're sick at your stomach. I believe you. That's how I felt, near two years ago now when I first heard the dreaded news: cancer. I totally believe you on your head and stomach. Been there, done that.

Now, it's your turn to believe me. As you gather information, knowledge really does become power, and with knowledge and power fear disipates --- it gets put into perspective. Right now you don't have that perspective, and so your reaction is a reasonable one, but from what you've told us, with a bit more research, your comfort level will soar and that brave face you're putting on, won't be a put on.

I do hope you'll keep posting and let us know how you and your husband are doing.

Give your husband a big hug and do your best to take a deep breath and relax. You're both bound to come through this with flying colors!

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, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24022
   Posted 1/31/2011 10:51 PM (GMT -6)   
diamonds, i wish only the best for you husband ,and you. now is the time to catch your breath, and learn all you can before any treatmenent decisions, if any, are made. no need to rush or get pressured into a decision at this point, explore all possible options, take in many opinions, and think through the entire process.

wishing you the best,

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2070
   Posted 2/1/2011 2:42 AM (GMT -6)   
Welcome Diamonds (and Husband)

This is probably the hardest part, the first few days and weeks after diagnosis. And I am so sorry you are so worried about it. I think we (including partners) have all experienced it. It's hard getting your heads round this, but it may help to realise that you do not have to rush into making decisons and can take your time to A) come to terms with the news and B) work out what treatment will be best.
One bit of information I haven't spotted in your posts is your husband's age, as that may have some bearing on what treatment options are the best.

Due to things like the Forum rules, folk here may be a little reluctant to mention specific doctors by name, but will tend to steer you towards good hospitals etc. I won't do either, as I live in The Netherlands and have no first hand experience of what goes on in the States. But I am sure you will find helpful advice here.

Best wishes
Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr CT
66Gy 28 Apr to 11 Jun 10
Tired + weird BMs
14 Sep 10 PSA <0.1
12 Jan 11 PSA <0.1
Erection OK

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3132
   Posted 2/1/2011 6:22 AM (GMT -6)   
Tony C. - a.k.a. viva Las Vegas (thank you very much)-LOL- above gave the first thing you do in a crisis situation (that verbage is from the Movie Twins with Arnold Swartzeneggar) and meant more in light heartedness. but the review of pathology slides by Bostwick, Oppenheimer or Epstein and there are a few others, that are critical experts (Gleason scorings sometimes are up or down graded), is very important and alot of uro-docs don't understand that message and send pathology to the local average guy whom likes to think he is the expert, probably is his golf buddy or good ol boy network. This happens very often, the best uro-docs know better as Dr. Strum pointed out in his book A Primer on Prostate Cancer...you shouldn't play games with overall assessments, we are talking about the most definitive information that they can find....and it still is not 100% perfect information.

They have to give you a copy of your pathology report upon request, according to USA law. My uro-docs office was surprized when I came in and literally demanded a copy on the spot, since they had a couple patients sitting there, they probably knew it was best to comply asap....I was prepared to level the playing field (LOL) with a rant if necessary.

Do not be rushed into anything it probably took 10-15 yrs. for the PCa to get to this level and yours is not in the crisis area compared to alot of others, like mine was.  Best to you both.

Post Edited (zufus) : 2/1/2011 6:11:23 AM (GMT-7)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1785
   Posted 2/1/2011 6:37 AM (GMT -6)   
Diamond, as a wife, I know exactly how you are feeling. My husband (John) was diagnosed three years ago at 57 years of age. In his case, Gleason was 7 (3+4) and the cancer was confined to one side of the gland. He opted for robotic surgery and the third anniversary is coming up in mid March. PSA at diagnosis was 6.4.

While I cannot recommend a surgeon in the Philadelphia-to-New York City area, I can empathize with what you are going through right now. Hearing that your loved one has cancer is like a lightning bolt shooting through you...our initial reaction tends to be visceral and all we can think of is "get it out." When the urologist called us at home to give us the news that John had PCa, I literally felt the ground tilt under my feet. John was cool, calm and collected, but I was a wreck.

If your husband decides on surgery, there's nothing that can be done for about 6 or 7 weeks after biopsy so you have a few weeks to think, plan, and research...and to get that second opinion on his pathology report. The bone scan is likely a waste of time and may add to your anxiety since any injury to the bone (including arthritis) shows up on the test and may require further investigation. My husband had a CT scan shortly after the biopsy which showed nothing. Our surgeon said no bone scan needed since, with a PSA of 6.4, it wouldn't tell him anything. I suspect that a bone scan is more to cover the doctor's butt but you should certainly speak further with the doctor about this test.

I'm sorry I can't offer more information but just wanted you to know that there are quite a few of us women who have been where you are now. Trust me, you will get through this.

Flytyer2
Regular Member


Date Joined Dec 2010
Total Posts : 33
   Posted 2/1/2011 7:08 AM (GMT -6)   
So sorry about your news. As others have said, your husband's diagnosis is one that offers great potential to get rid of the cancer, and with your support to live a full and complete life. After the initial shock wears off, you all will have an opportunity to re-prioritize your life, focusing only on what's important, and leaving the rest of the garbage behind. We'll say a special prayer for your husband and you, and wish you all the very best.
Age 61
PSA: 12/09 7.3 (Proscar) -- 7/10 9.06 (Proscar)
--------------------------------------------------
Biopsy 9/13/2010
Diagnosed 9/20/2010
One of 12 cores positive: <5%

RRP at Mayo Clinic, Rochester, MN 12/15/2010
Gleason 3 + 4 with tertiary grade 5
Tumor confined to the prostate
Surgical marginins negative

Catheter removed at Mayo 01/03/2011
Pad free with min leakage 01/18/2011

bill88
New Member


Date Joined Feb 2011
Total Posts : 3
   Posted 2/1/2011 12:17 PM (GMT -6)   
First, go to; http://pathology.jhu.edu/department/services/secondopinion.cfm - click on and fill out both sets of forms, I have my slides, I don't have my slides, on the right side of the page. Unlike other PDF's it will save to your hard drive. Make a copy of you insurance card both sides. Fill and print both sets of forms off and put a sticky note one saying I have the slides or one the lab has them.


Second call and get appointment with your husbands urologist and if all possible go with him. During the appointment ask the doctor for a copy of the biopsy results hard copy. Ask him where your slides are? Most doctors send them out of town to some lab, mine went to Georgia even though I live in New Jersey. So my doctor took the set of forms that said I don't have the slides. He contacted the lab and had them shipped to John Hopkins and faxed the forms along with the copy I made of my health insurance. If your slides are local then go and pick them up go to FEDEX and follow the instructions on the sheet Hopkins provides. Also if you are handling the slides highlight each place your doctor has to provide information and have him fill it out right then and there.

Wait for Hopkins results, in my case I went to the doctor on Friday and he called me the following Wednesday with Hopkins report which didn't concur with the original lab. After the Hopkins report comes back to your doctor go in and get a copy.

Doctors or centers, what major city do you live near without being to specific? My location puts in two hours from New York, one hour from Philadelphia and 3 hours from Baltimore John Hopkins where I have an appointment in a few weeks.

p_elliott
Regular Member


Date Joined Nov 2010
Total Posts : 143
   Posted 2/1/2011 12:41 PM (GMT -6)   
The first thing you have to do is don't freak. I got the news I was like it was a ton of bricks my wife was like this is life we will deal with it. The doctor told me I might pee myself for a while and would have to wear pads I was freaking out she said I wear pads every month join the club. He said you might not be able to have sex for a a couple of years she said that's not why I love you. Get your heads around this it's a challenge the doctors are telling you worse case stuff. I had erections back in a month. Take your time make sure what you want to do. Get good doctors it's not as bad as it's made out to be if you keep a positive attitude.

diamonds3
Regular Member


Date Joined Jan 2011
Total Posts : 112
   Posted 2/1/2011 12:48 PM (GMT -6)   
Dear Bill 88,
 
Thank you. so much. It seems that you are the beginning of this ordeal as are we . How long to get the pathology reports? I will do that ASAP
 I am interested as to why you decided to go to Hopkins for 2nd opinion on treatment? My husband seems to think that Hopkins is where one goes for surgical consults .
 
 Do you have any info regarding the following Are you of the opinion that they will present others choices for treatment ? What is their opinion on Robotic ? Do you have any idea of their results for localized RP and incidence og ED and Incontinance
 
Please keep in touch and God Bless You

diamonds3
Regular Member


Date Joined Jan 2011
Total Posts : 112
   Posted 2/1/2011 12:52 PM (GMT -6)   
Dear Bill 88,
 Forgot to add that my husband and I live 20 minutes out of Philly.

diamonds3
Regular Member


Date Joined Jan 2011
Total Posts : 112
   Posted 2/1/2011 1:01 PM (GMT -6)   
Dear P_Elliot,
 
Thanks for your cander. You are lucky to have such a wife who is able to use her humor to diffuse the fear. I will try to do that as well
I'm happy you had good results. Do you mind sharing your diagnosis , age , treatment?

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 962
   Posted 2/1/2011 1:43 PM (GMT -6)   
Some doctors I have seen recommended, in the places you mentioned, include: David Lee (surgeon - Philly - Penn Medicine); Alan Partin, Christian Pavlovich, Pat Walsh, H. Ballentine Carter (surgeons - Hopkins); Peter Scardino (surgeon/urologic oncologist - MSKCC); Bertrand Guillonneau (surgeon - does laproscopic, without robot - was at MSKCC - not sure if he is still there, or not); Richard Stock (radiologist - Mt. Sinai - NY); Michael Zelefsky (radiologist - MSKCC - NY). There are of course MANY other qualified doctors, in all of the cities you mentioned, and I am NOT suggesting that the doctors who I have listed are the "best" doctors or that htey are more qualified than doctors who I did not mention. But you asked for some names, so I am providing some. I wish you and your husband all the best.

Post Edited (medved) : 2/1/2011 11:49:06 AM (GMT-7)


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 2/1/2011 2:08 PM (GMT -6)   

diamonds3,

 

After a diagnosis of prostate cancer (PC) has been made and the initial shock of a life-threatening diagnosis has begun to lessen, the thoughts of the patient almost invariably focus on “What should I do to get rid of this disease?” Family and friends reinforce this mental set, as well as add to the anxiety of the situation by asking, “What are you going to do?”

 

The main focus in the context of a new diagnosis of PC, however, should not be on what particular treatment should I select, but rather on understanding the specific expressions of his illness, and how they lead to a rational choice of therapy. In such a setting or context, the patient and his team act as medical detectives¾to gather information, analyze, re-evaluate, and then begin to consider what to do.

 

No patient or family is magically transformed into a PC expert upon being diagnosed with this disease. Life is not that simple. Amazingly, there are patients who rise to this threatening “occasion” and educate themselves to a degree that many physicians find astoundingly impressive. Many other men delegate this empowerment process to others -- especially their wives or their partners. These men do not enter the empowerment process and do not optimize their chance of a successful outcome. They also miss the opportunity to bond with other men and/or women and the ability to not only receive guidance but to give it to others in return.

 

The heart of Empowerment involves taking responsibility for, and authority over one’s own outcomes based on education and knowledge of the consequences and contingencies involved in one’s own decisions. This focus provides the uplifting energy that can sustain in the face of crisis.”

 

 

These are the words of one of the recognized experts in prostate cancer, Dr Stephen Strum from an article he wrote titled “A Strategy of Success in the Treatment of Prostate Cancer.”  It’s good advice, and as such, I’m not going to prematurely press the conversation into treatment choices…there is plenty of time in upcoming days to start talking about that.  Others may be quick to recommend this method or that method; I’m going to tell you, however, that you don’t need to rush.  In a very, very large percentage of cases, prostate cancer is not the fast-growing devil that other cancers can be.  Do yourself and your husband a favor, and move at a deliberate pace to reach a treatment decision, as Dr Strum recommends.

 

You’ve already gotten input on getting a 2nd biopsy reading opinion…I would continue to follow through with that; this is a highly recommended “best practice.”

 

In parallel, I would recommend placing an online order today for a book considered by many to be the “bible” of prostate cancer:  Dr Patrick Walsh’s Guide to Surviving Prostate Cancer”.  Dr Strum’s book is a good second choice, and lots of other 3rd choices…   I recommend placing an order today for Dr Walsh’s book in order to start & solidify your education process.

 

Here’s another “tool” which I can provide for you to begin previewing.  It’s called the “Guideline for the Management of Clinically Localized Prostate Cancer:  2007 Update.”  It is a publication of the American Urological Association, and it’s available free online.  As I already stressed, you shouldn’t be making treatment decisions now, but this will help you to frame-up a decision making process.  In summary, the document guides you to closely examine four facts/dimensions about your husband in order to make the most personally appropriate treatment decision:  his cancer characteristics, his overall health, his life expectancy (age), and his personality/values. 

 

I followed this guideline fairly closely in my decision making process, and it left me with high confidence before, and after, my treatment that I had done the right thing…right for me.  This guideline doesn’t steer anyone toward one treatment or the other, but helps with the decision making process.  Later, if you are interested, I can/will share how I analyzed these dimensions for myself (again, my age and case sounds very similar to your husband’s).

 

I’m now 2-years past my diagnosis, and consider myself fully recovered…and I will probably never have to deal with PC again in my life.  We have a group of guys here at this site who are at various stages of our recovery, after various treatments, who are focused on lifestyle modification to improve our longevity and quality of life…right now we are focused on a “PC/Aerobic Exercise Challenge”, but we’ve had lots of lifestyle discussions on diet/nutrition for both fighting prostate cancer and other “best practices.”  The only reason I mention this now to you is that over the next several months (between now and your husband’s possible treatment), he should consider undertaking an exercise routine to get himself into the best physical shape possible.  It will absolutely help in his recovery.

 

I hope that you take Dr Strum’s words at the beginning of this post to heart…way, way too many people rush unnecessarily into treatment discussions and decisions.  I encourage you to get a complete understanding of your husband’s case, learn about all the treatment options, and follow the decision methodology to explore what’s important.

 

In your learning process, don’t be shy about seeking the best doctors at the Comprehensive Cancer Centers I previously listed…they all take insurance just like all the other doctors.  I’m in Chicago-area, and only know names of doctors in your area that I’ve read about who are very highly regarded.  I could send some of those, but hopefully others with first-hand experience with those docs will also chime in.

 

best regards…

 



bill88
New Member


Date Joined Feb 2011
Total Posts : 3
   Posted 2/1/2011 3:52 PM (GMT -6)   
First, please take a breath and slow down a bit. I was fortunate (may be a poor choice of words) to have 5 colleagues that in the last 5-years have been diagnosis with prostate cancer. My numbers are worse then your husbands; I was diagnosis this year January 7th so not very long ago and I’m 56 years old. I sought out my 5 colleagues and drained them of any knowledge they have.

My approach is a little more clinical because I have been an engineer my entire working life, in fact earning my Master from Drexel in Philly. So I’m approaching this as another problem to solve even though it does have a very strong emotion aspect, it hits me at night when I try to fall asleep.

To answer your first question, Hopkins will have results of your husband’s biopsy within 48 hours of receiving them. I was fortunate because my urologist had them shipped on a Monday and he called me on a Wednesday night at home with the results and I stopped at the his office for a hard copy the Friday after. Most institution want to examine the slides for themselves so if for some reason I decide to go somewhere other then Hopkins I will then have to repeat the process.

Hopkins has been rated as the top urological hospital for the past 15 years by US News and World report, if that has any value. They perform about twice as many prostatectomies as anywhere else in the country. That said, there are many excellent surgeons to choose from in Philly, New York and Hopkins Baltimore. I dismissed New York Manhattan because of the stress of dealing with the traffic. Plus after I have surgery in New York my wife will have to stay in a New York hotel and then navigate traffic with me as passenger after surgery. That said, if there was a compelling reason to go to New York I wouldn’t hesitate but there isn’t.

In Philadelphia, Pennsylvania Hospital (not University of Pennsylvania) Dr. Daniel Eun or Dr. David Lee at Penn Presbyterian Medical Center. At Jefferson Dr. Leonard Gomella also excellent choice but you will wait about 3-hours for each appointment at Dr Gomella’s.

At Hopkins Dr. Alan Partin, Dr. Edward M. Schaeffer or Dr. Christian P. Pavlovich. I have an appointment with Dr. Partin as well Schaeffer.

You can read until your eyes give out which I have done. Much of the information on the web maybe 80 percent is worthless. The 20 percent good of information only 5 to 10 percent applies to someone your husband’s age. Unfortunately, he like me surgery is the only rational option given our age. As far as Robotic vs open there is no difference in end result outcomes for ED or incontinence latest study published by Johns Hopkins. Treat the cancer and deal with the after affects if there are any in due time.

There is already a lot of chaff in this thread, this women is looking for information not holistic philosophical boiler plate. Stick to the subject and to 20 minutes from the Philadelphia area if you have no relevant information to that please don’t post just to post.

Herophilus
Regular Member


Date Joined Sep 2009
Total Posts : 477
   Posted 2/1/2011 4:09 PM (GMT -6)   

Gosh I love this site...this is what it is all about, great info in this post..

Good luck Diamonds, not a darn thing I can add .   

Hero


Age 51 PSA 6.8
Bxy 10 of 12 Cores positive for Gleason 6. up to 75%
Robotic surg 11-02-09
Post op path. 20% neoplasm;4+3=7 Gleason
All nodes (14) and other related tissue negative for cancer
No EPE
Post op PSA x 3, all <0.01
walkbobwithjack.blogspot.com

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 370
   Posted 2/1/2011 5:03 PM (GMT -6)   

Diamonds............you've received quite bit of good advice here from other members. Just wanted to add that I and several others had Davinci surgery with Dr. David Lee at U.of Penn.  At the time of my surgery, he had performed over 1800 (1/26/09)...he is now over 2000. All of us on the forum who have been treated by Lee are pleased with the results and care. I'm not advocating surgery over any other treatment, just giving you names and my experience. I also consulted Dr. David McGinnins of Bryn Mawr Urology, and I think he is affiliated with Jefferson Hospital. I could have easily gone with him, and at the same juncture, had performed 800 Davinci surgeries, and many more opens...........I also had my biopsy slides sent to Epstein at Hopkins for second opinion. Since I live in Delaware, I consulted with Dr. Donavanik (brachytherapy) at Helen Graham Cancer Center, and consulted with Steven Grubbs, a medical oncologist there. I'm being followed locally by another terrific urologist, Thomas Desperito, who does Davinci, but had not performed enough at the time for me to feel comfortable, even though he trained under Lee. You're fortunate that you live so close to so many good options.........just trying to give you a few specifc names to chew on.

Arnie in DE


Age 56 (biopsy & surgery)-PSA-3.9-Biopsy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3) 1/26/09-DaVinci Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA-Dr. David Lee
Path. Report- G7 (3+4)Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins
Continent at 3 mos.------ED improving
PSA at 2 yrs-<0.1

diamonds3
Regular Member


Date Joined Jan 2011
Total Posts : 112
   Posted 2/1/2011 7:01 PM (GMT -6)   
Dear Members,
Thanks so much for your excellent recommendations and feedback. Perhaps the best thing about this sort of thing is realizing how kind, campassionate human beings can be.
I would like to especially thank those who gave me specific things to do, where to go and whom to see.
I realize , Casey, that my husband must take the reins... I am fowarding to him those responses which will inform and give him hope and friendship as I know I was overwhelmed when I first came to this site because of all the information.
I am hoping that he will find it to be an invaluable source of support as have I.

cupcake25
Regular Member


Date Joined Jan 2011
Total Posts : 24
   Posted 2/1/2011 9:01 PM (GMT -6)   
Diamonds. I know it is very difficult but take a deep breath and relax. My husband was diagnosed with prostate cancer in Oct. 2010. We were very devastated to say the least. I was so upset I went into counseling for awhile. My husband just had a robotic radical prostatectomy Jan 11 2011. His PSA was initially 6.1 and then 4.6. He had a gleason 3+3 6 in both lobes of his prostate.DRE was normal. We live close to Baltimore and went to Greater Baltimore Medical Center in Towson Md with Dr David Goldstein. He was Excellent. My husband was in surgery longer than usual because he had trouble getting his foley in and he had to do a cyto to remove a polyp in his bladder. My husband has done well. All his margins were clear and his doctor said he was cured. We were so excited to hear the news. I don't know any doctors at JHH but GBMC has a great reputation. My husband now has some urinary incontinence but his doctor said he should be dry in 6 months. He also was able to do gentle nerve sparing and he is now on viagara 3 times a week and will be getting a vacuum for his penis. You are exactly where I was a few weeks ago. I feel your husband will be fine and you will have many more happy years together.
 

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 2/2/2011 3:06 AM (GMT -6)   
You have gotten a lot of good advice. But remember that even when you are dealing with the top doctors there is still uncertainty. My uro (one of those mentioned above) told me that it was very frustrating that he could perform two surgeries which seemed the same to him but had different outcomes. That is, there are factors that are beyond the skill of the most skilled.

With your first deep breath remember that prostate cancer is very curable. There is no "best" only a "reasonable choice."
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day
9 mo. PSA 0.00 -- 1 light pad/day ED remains
12 mo. PSA 0.00 -- still one light pad and ED
16 mo PSA 0.00 -- light pad just for security, ED still an issue

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 2659
   Posted 2/2/2011 7:55 AM (GMT -6)   
Dear Diamonds:
 
Welcome to the forum...sorry you have to be here but as you can already determine from this thread there are a lot of helpful and caring folks here.  At this point I can't add to the specific info you have received but will share one word of caution.  Not everything you read here will be correct despite folks' best intentions.  For example, bill88 said, "Unfortunately, he like me surgery is the only rational option given our age."  I can't speak for bill88's prognosis but, based on what you have shared with us about hubby's stats, that is probably NOT a true statement for you.  You are likely to have a whole range of treatment options available and you are wise to explore them all.  In fact a treatment other than surgery MAY be the rational option.
 
Best wishes and please continue to let us know how you progress.
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643
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