2nd opinion.... well worth the trip.... I hope

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enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 8/7/2007 4:58 PM (GMT -7)   
Hello everyone-
 
      Me again.   Here's the latest.
 
      We went to the Claire & John Bertucci Center for Genitourinary Cancers @ Mass General Hospital yesterday for a 2nd opinion. 
 
      Their team reviewed Dave's slides and records prior to arrival.       
 
      We met with Dr. Donald Kaufman (Clinical Director) & Dr. William Shipley (Chief of Radiation Oncology)
 
      They downgraded him from Gleason 7 to 6.   They behaved as if this was terrific news.  (is it?)   I asked how can these numbers change?  I was told it's subjective they gave me a brief description and that "in Dr. Young we trust".
 
      Dave had another DRE and we were told was "unremarkable".      Both doctors recommend surgery and we left with an appointment to see Dr. Francis McGovern on August 21st.  They told us he specializes in "nerve sparing" lapropscopic prostatectomy.   They said incontinence should not be a problem for more than a few months.  They said the nerve should be left in tact.   They told us that five years from now we look back at this experience as a "nuisance".
 
     Unlike CMC here in Manchester, they do not use the DaVinci robot.   Still, this was wildly different from the grim news we were given  here in Manchester.   
 
     David left with a good comfort level with the team.  Even though he has yet to meet the surgeon, he has made the decision to have this taken care of in Boston.
 
     Am I missing something?
 
     Trusting you to straighten me out-
 
     THANKS
     Ellen
Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 664
   Posted 8/7/2007 6:29 PM (GMT -7)   

 

It's good to hear that a new review of your husband's biopsy reduced the Gleason score. That means it is probably a less aggressive cancer.

I am an enthusiastic proponent of The DaVinci surgery.  I would not consider laproscopic surgery without the guidance of the Davinci robot. Regardless of the experience of the surgeon. 

My discomfort was mimimal and my healing remarkable fast.  I suffered few continence problems but have been working on the erectile issue.  I recently started the Caverject injections and I am mildly optimistic about the future.

I just received my six months PSA results today and they are (less than .001) undectecable.


 
Biopsy 10/16/06
T2A,  PSA 4.7
Gleason 4+4=8 right side
adrenocarcinoma of prostate
DaVinci Surgery 01/16/07
Post op report,confirms Gleason4+4=8
no extra extension/invasion identified
age 65
Back on the golf course...
90 day PSA  less than 0.01 (undetectable)
 
 


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 8/7/2007 6:30 PM (GMT -7)   

Hi Ellen:  My two-cents are below in blue.

 

We went to the Claire & John Bertucci Center for Genitourinary Cancers @ Mass General Hospital yesterday for a 2nd opinion. 

Their team reviewed Dave's slides and records prior to arrival.  We met with Dr. Donald Kaufman (Clinical Director) & Dr. William Shipley (Chief of Radiation Oncology) They downgraded him from Gleason 7 to 6.   They behaved as if this was terrific news.  (is it?)

 

Yes it is terrific news.  A Gleason of 6 is better than 7, although a 7 doesn't mean it's curtains or anything. There are many guys I know who had Gleasons of 7 or 8 and PSAs that were way up there -- and they have been cancer-free and in great health 15-to-20 years post-surgery.  If you decide on surgery, the post-op pathology will give you a more reliable Gleason score, because they will be able to examine the prostate in ways that are impossible through the initial biopsy specimins.

 

I asked how can these numbers change?  I was told it's subjective they gave me a brief description and that "in Dr. Young we trust".

 

Numbers can and will change.  When I went in for surgery, my biopsy suggested that I had major infiltration in both lobes -- from 100 percent, to 90 percent, to 80 percent, two 50s, per core sample.  And I'd had two negative DREs.  Right after my surgery, the surgeon told my wife he believed the post-op patholgy would be much more favorable than the biopsy suggested.  And he was right.  I had about a 14 to 15 percent involvement in my lobes. 

 

Dave had another DRE and we were told was "unremarkable".

 

"Unremarkable" means they didn't feel anything abnormal.  That's a good thing.

 

Both doctors recommend surgery and we left with an appointment to see Dr. Francis McGovern on August 21st.  They told us he specializes in "nerve sparing" laparoscopic prostatectomy.   They said incontinence should not be a problem for more than a few months.  They said the nerve should be left in tact.   They told us that five years from now we look back at this experience as a "nuisance".

 

If you feel that you are being pressured into surgery, be sure to explore the radiation options as well.  Both have the same success rate and both have side-effects, although different.  It's a matter of decision.

 

Unlike CMC here in Manchester, they do not use the DaVinci robot.   Still, this was wildly different from the grim news we were given  here in Manchester.

 

Go with the good news and research laparoscopic compared to robotic laparoscopic.  Make as many appointments as possible with radiation and surgery docs.  You can always cancel -- THEY ARE ALWAYS BUSY. 

 

David left with a good comfort level with the team.  Even though he has yet to meet the surgeon, he has made the decision to have this taken care of in Boston.  Am I missing something?

 

It would have been nice for you to be able to meet the surgeon during your visit.  In my case, the surgeon was my only  M.D. contact after doing my research in Vegas and choosing City of Hope.  And I liked that.  It made me feel comfortable about my decision.

 

The most important thing -- in my opinion -- is to find out how many procedures this surgeon has done.  Just ask.  I did here in Vegas and that's why I went to California for my surgery.  Call your local Cancer Society and ask for a PCa contact.  They could lead you to men who will share their experiences with the doctor you have chosen.

 

Trusting you to straighten me out-

 

I'm just sharing experience and opinion.  Don't put all of your trust in any individual.  I think everyone here will agree that the most difficult part of your stage in this PCa thing is deciding what you want to do and whom you want to do it.  Once that's established, you're on you're way to healing.

 

Best to ya,

Your man will be fine.

Tom 


54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07

Post Edited (PianoMan) : 8/7/2007 8:46:07 PM (GMT-6)


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 8/8/2007 3:57 AM (GMT -7)   
Ellen,

I just want to chime in with Lifeguyd, Tom, & Selmer.

A Six (maybe 7) Gleeson at age 50 would encourage me personally to choose surgery.

I agree with the point Selmer made about the experienced Laperascopic surgeon is likely a better choice than the trainee on the robotic.  I do believe that the robotic has some advantages.  For example, it allows the surgeon's hands complete freedom in range of motion, requires less physical strength (some say allowing more finesse), and often has better magnification.  My reading suggests non-robotic laperascopic prostatectomies will eventually be eclipsed.

On the point about finesse: While robotic suddenly seems commonplace, I am aware that many of the best institutions have relatively recently (last 18 months) made the switch from laperascopic.
My surgeon who began my surgery as robotic and then had to open me up (due to adhesions from many previous abdomnial surgeries blocking the way of the robotic equipment) had done thousands of open surgeries before he and his partner began laperascopic and then robotic procedures. 
He observed: Where before all the doctors would once go and watch a robotic being performed.  Now, as robotic is the norm, they all rush to watch the rare open being performed.

My comfort-level with choice of a surgeon includes his/her overall expereince with the equipment and open procedure and what kind of team she/he works with.  No surgeon does this procedure alone.  Overall experience of the team with both open and equipment assisted procedures should be considered as part of the decision-tree.


Work on kegels, now.  My physician set up a bio-feedback appointment as soon as possible BEFORE the surgery to make certain I was execising the correct muscles.  It is important.  The physician can also check if the patient is doing the correct exercise by doing a DRE while the patient contracts.
My team recommends only doing 3 sets a day prior to surgery and until after the catheter is out after surgery. ( For example: 10 ten-second  contractions  and 10 two-second contractions and 10 "Charleston/windshield wipers")

Godspeed!

CCedar
ICTHUS!

2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 8/9/2007 4:45 PM (GMT -7)   

Hi Everyone-

       Thanks for your time and attention!  I'm so sorry I didn't reply sooner.  Our refrigerator broke (3rd time this summer) and I've been duking it out with Sears over their bandaid approach to repair.  I made several frustrating calls then did a reality check.

        I decided my time is better spent reading and learning about Dave's upcoming surgery.  I want to do all that I can to educate myself and be as prepared as possible to help him. 

        But it does make me appreciate that life goes on.  I'm determined to make us both stronger and healthier in hopes that Dave will have an easier recovery & I can handle things while Dave's recouperating.   

        Can you give me some ideas on what to expect?   How long will he be out of work?  How long before he'll be able to drive again?   Is there anything that I should have at home to keep him comfortable?  Will he be on a lot of pain meds?   We have a two story house will he be able to go upstairs?   How often & how frequent are follow up visits?  Someone mentioned rehab, etc.  

        I'm concerned because my calendar is pretty full already, as I take our son to social skills classes on Mondays, occupational therapy on Tuesday, and his therapist every Thursday.  He also sees a psychiatrist once every two weeks.   And he'll begin his freshman year in high school soon.  

       It will be an adventure in juggling to add more to this mix! 

        Also, I'm curious.  How do you all handle it all?  

        I'm doing my best to surf over the stress.  Still, I'm the mother of an autistic teenager and the wife of a man who needs this life saving surgery.   I have two David's counting on me.  Both Sr. & Jr. need me to lift them up and meet their needs.    But every now and then, I fall apart.

        Thanks!

        Ellen

        (Home Depot delivering new fridge tomorrow)

 

 

 


Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/9/2007 7:39 PM (GMT -7)   
Ellen,

In my case, with the robotic laparoscopic surgery, I was told to expect to be out of the office for 2-3 weeks which included the stay in the hospital. I think other laparoscopic surgeries would be similar. open surgery may be a little longer for hospital stay and full recovery. I expect to go back to work using the full three weeks since my boss encouraged me to do so and I have disability benefits that have kicked in.

I had very little to no pain using the pain meds in the hospital. I went home in 2 days, but realistically 3-4 days may be the norm for my kind of surgery.

The second day after being home I went off the heavy pain meds and managed pain with Motrin IB and Darvocet. One week out that is working very well. Your husband's results will likely vary.

You'll have a visit to the doctor about one week after surgery to get that darn catheter out, to discuss the results of the procedure, the side effects to work on, and, most important, discuss the final pathology report for the prostate and any surrounding tissue that was removed by the surgeon.

Five weeks after surgery, expect to get the first PSA reading, hoping for undectectable. Some doctors will then do a PSA every three months for one year, switch to 6 month intervals for 3 years, and then go to an annual PSA.

You asked, "how do we cope?" I think it is diffucult for everyone. We use lot of prayer and faith. Our family has been hit by cancer before and we know we just need to somehow keep going. But don't knock yourself down for being mortal. It's okay to have some down days as long as you know that the up days will somehow always be there.

All the best to you in your treatment decisions.

Idaho
Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one node, <5% volume
Surgery (robotic): 31 Jul 2007, saved nerve bundle on side of non-cancerous node
Hospital stay: 2 days
Final pathology: Tumor confined to prostate, T2a, 3+3=6, <1% volume
Working to get back into good shape
Waiting for that first post-op PSA


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/9/2007 9:10 PM (GMT -7)   
Ellen, everyone's experience is a little different. I had a very easy time. Had Da Vinci laproscopic surgery on June 7. I checked in at 10 am, went into surgery at noon and was back in my room by 3 pm. I was a little groggy and sent my family home -- I just wanted to sleep. I was up and walking up and down the hall by 6 pm. On a morphine drip for the first night, along with the leg sleeves that pump up and down to keep the circulation going (can't remember what they're called). I slept pretty well that night -- considering. Dr came in about 11 the next morning and I was discharged at 1 pm with catheter in place. I expected catheter to be a real nuisance but it actually wasn't that bad. I experienced quite a bit of bleeding from penis at first. BMs VERY uncomfortable for the first few days, with a lot of bleeding from the front end. Dr said that's not at all unusual as internal suture sites were still healing and not to push so hard -- yeah, right. That resolved after about two weeks. In the meantime, catheter came out after 7 days. I was REAL nervous about incontinence, but when they pulled that sucker out -- no leaking. I got up and walked to the bathroom -- no leaking. Put a pad on and walked about a mile to where I catch my ferry (I live on an island west of Seattle) -- no leaking that I could tell. By that night, my pad was pretty wet, but things improved pretty rapidly. I was off pads totally after the first month. I have the occasional drip now and then, and I have to be careful with alcohol and strenuous exercise. I had virtually no pain (except as indicated above). Slept A LOT. I went back to work after two weeks. I have a pretty sedentary job, but even so I found that I was pretty tired after a full day. I probably went back a week too early. I was still sleeping about 10 hours a night for about the first month, which is a lot for me. ED -- that's been frustrating, but is improving gradually. Dr advises they really don't expext to see much improvement for at least the first 3 months, even with bi-lateral nerve sparing which I was lucky enough to have. Some guys are luckier, but I'm told most will improve very slowly at first and then gradually get function back over the next several months. I'm still hoping and trying to be patient. I was on 50 mg Viagra initially and then Dr upped it to 100 mgs after 6 weeks. That's when things started to improve! Not great yet, but better. All in all, I feel great, and the surgery part really was a breeze. Please understand that, as I said initially, everyone's a little different and some guys have more or less trouble. Your husband's relatively young (I'm 60) with a good intial Gleason, and I bet he's going to waltz through the whole thing. Good luck and stay in touch with us here at HW!
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