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Open Procedure Aug. 2

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Posted 8/10/2006 12:49 PM (GMT -6)
I thought I would share my experience with others.
 
Diagnosed in May.  One core out of 12.  Gleason 6.  PSA 4.9.  This was my fourth biopsy.  Had PSA between 4-5 for past several years.  Age 50.
 
Been anticipating postive biopsy one day for a while.  Always had questionable results which were ultimately sent to Johns Hopkins' Jonathan Epstein, perhaps the most renowned prostate tissue pathologist in the country.  Dr. Epstein made the call of cancer this past May when the pathologists down South (I live in New Orleans) said it was too close for them to call.
 
Decided I wanted a cure, particularly given my age.  So, I knew surgery was my option.  Wasn't sure which procedure, open or robotic/lap.  Knew I would travel for the procedure.  Realized there is no expert who does both.  Whatever procedure they perform is the procedure they will tell you is the better.  So, I decided to pick my surgeon rather than the procedure.  I didn't care if I had a smaller scar or not, or if I had a longer recovery.  I wanted a cure.  Also, there is no evidence one procedure gives you a better chance for continence and erectile function.
 
After weighing options, decided to call Alan Partin, MD, at Johns Hopkins.  I placed a call on Thursday, June 8, and had an appointment to see Dr. Partin on Monday, June 19.  I thought that was remarkable!  Saw Partin at 9 a.m.  He reviewed my case and asked what I wanted to do.  I told him and his staff scheduled surgery for Aug. 2.  I was told I was no. 2 on the surgery schedule that day.  Partin told me the surgery would take about one hour, that only 2% of his patients needed a transfusion (he suggested that I not waste my "time or money" donating blood and mailing it to Baltimore), that I would be in the hospital no more than two nights, I could stay in a hotel the night of discharge and fly home the next morning.  The man had all the answers backed up by solid research and experience.  I felt blessed to have such a skilled surgeon.
 
I next saw Partin on Aug. 1 for the pre-op appointment.  Everything was a "go" for the next day.
 
Checked in Aug. 2 at 7:45 a.m.  Taken to the pre-op room after a few minutes.  Went to the OR around 9:30 a.m.  Remember seeing Partin as I rolled off the gurney onto the OR table.  He's a big man (former lineman at Ole Miss).  He had his game face on at the time.  He's confident in his ability.  I could tell his concentration was on me 100%.  That made me feel good.  I looked over at him as the anesthesiologists were working on me and told him, "you da man!"  The next thing I remember was the recovery room.  Partin came in to see me and described the surgery as "perfect". 
 
I was taken to my room awake.  Felt pretty good.  Well medicated at the time.  Had some nausea that night.  The next day, Thursday, Aug. 3, was a roller coaster.  Had some pain in the a.m., but by the afternoon was roaming the halls.  Passed some gas that night, had a little more nausea.  Friday morning, Aug. 4, felt better.  Ate breakfast with no problem.  Visited Jonathan Epstein, whose lab was a building or two away from my hospital room, and thanked him for past pathology reports.  He's a nice man.  By noon I was discharged and off to the hotel for a one night stay.
 
Walked the halls a lot at the hotel.  This helped the lower intestines get back on track.
 
Saturday morning took some pain medication and went to the airport for the 2 1/2 hour flight to New Orleans.  Decided to wear shorts with elastic waste and carry my Foley bag rather than stuff it down a sweat pant leg.  A great decision.  Had no problem with the flight and emptying the bag a couple of times.  Stood up in the back of the plane as much as possible.
 
Been home now five days.  One week, one day post surgery.  Staples will come out tomorrow (probably ready to come out now).  Catheter scheduled to come out Saturday (ten days post surgery).  Have an appointment with my local urologist to take it out on Monday.  Don't think an extra two days will hurt.  Partin told me I was a "wimp" if I didn't take it out myself.  I decided to be a "wimp"! 
 
Also received the post surgery pathology report from Jonathan Epstein:  negative margins and lymph nodes.  Diagnosis:  as close to a 100% cure you can hope for at this point.  Will take a PSA three months post-op.  If that reading is negligible, I'll be in great shape.
 
Goal one accomplished.  Will turn to goals two and three next week when catheter comes out.
 
Posted 8/10/2006 12:59 PM (GMT -6)
Congratulations. Please keep us up to date on your recovery
Posted 8/10/2006 2:08 PM (GMT -6)
Hello SJC,

Glad to hear every thing has been going well for you post-op. I guess I'm a wimp too because there is no way I was going to remove my own cath, and it really turned out to be no big deal. When you go to have it removed don't forget to take along a couple of Depends for men just in case. Good luck on your first post-op PSA, and please keep us updated on your progress.

Glen
Posted 8/10/2006 2:43 PM (GMT -6)
Glen:

Thanks for the advice.

SJC
Posted 8/10/2006 5:15 PM (GMT -6)
SJC - thank you for posting your experience. my husband is scheduled for open (radical prost.) surgery on Aug 30. here I am worried about an hour and a half ride home from the hospital and you flew home! please keep us up to date and feel free to share as many details as you feel comfortable. what part of NO do you live in? Jeff loves the Big Easy and we usually go almost every year. we haven't been there for 2 years now and were hoping to go in Sept - we've now moved that Mar/Apr. kat
Posted 8/10/2006 8:37 PM (GMT -6)
M. Kat:

My home was in East Lakeshore. Got inundated by water and holed by a couple of large trees. Now have a lovely empty lot where we hope to rebuild a new home next year. The area of New Orleans you frequent during your trips (the French Quarter) is high and dry. Everything is open and the food is great. Come over for a visit after the surgery!

SJC
Posted 8/11/2006 5:10 AM (GMT -6)
Here's a little more of my experience.

I empahsized walking after surgery. I had some intestinal pain due to inactivity those first few days. Relief comes from the first gas, followed by the bm which I had for the first time on the Sunday after my Wednesday surgery. The doctor recommended mineral oil and milk of magnesia to help. I took stool softeners and milk of magnesia and have had movements each day since. I'm now taking a half dose of milk of magnesia at bedtime and doing fine. Re surgical pain, it's just about gone. The discomfort is mild. I'm down to one pain pill every 12 hours and thinking about giving it a go today with none.
Posted 8/14/2006 7:01 AM (GMT -6)
Update since Friday, Aug. 11:

Got the staples removed on Friday, went on a couple of errands with my friend who took me to the doctor and had a visitor at home. Felt a little crummy, so took a pain pill mid-afternoon. Haven't taken another one since. So, the pain medication stopped cold turkey on the ninth day post-op.

While the catheter could come out on Saturday, the tenth day post-op, had hoped to see the doctor during normal business hours Monday to have it removed. Started having bladder pain on Sunday. I believe the catheter was clogged. Not much in the bag. Called the urologist ( a relative ) and he came over and removed the catheter. By then, I really had to go. To my amazement, I was able to maintain control until I reached the toilet. Around 2:30 p.m. I had a Depends in place and was apprehensive about what was about to happen. I experimented while standing by the toilet. When I coughed, I had no control. When I did a kegel and coughed, I had control. (I know I have some work ahead of me.) When I passed gas, I had leakage (a common trait from other posts). I did a lot of standing and lying on my back. I did sit for dinner. Fluid intake was moderate. I used a single pad until I went to sleep around 10:30 p.m. It was damp, but not saturated. I woke up around 2:30 a.m. with an urge to go. Was able to maintain control until I got to the toilet. Got up again around 5 a.m., my usual wake up time, emptied my bladder, and experimented by taking my 40 minute, 1.5 mile walk, pad free. I came back dry (perhaps b/c there was nothing left to come out). I am hopeful this is a good sign. I will try to return to my office this afternoon for the first time. I've got an office job. No lifting greater than 10 pounds for six weeks post-op.

During Partin's hospital room visit the day after surgery, I asked him about continence/potency. He's got all the stats based upon hundreds/thousands of patients; however, when it comes down to what a single patient will experience, he said "it's in God's hands". His discharge material states that it is different for every paitent. Continence usually comes back in three phases: Phase I - you are dry when lying down at night; Phase II - you're dry when walking around; Phase III - you are dry when you rise from a seated position. He recommends kegel exercises. He told me the first time I saw him (June) that it's like getting potty trained all over again. He did tell me the longer you wear the pads, the longer it will take to regain full control. Partin's discharge material concludes by stating, "Again I emphsize that urinary control takes time. Do not get discouraged".

Re sexual function, Partin prescribes 25 mg of viagra each night for four weeks starting the night the catheter is removed. His instuctions state that studies have suggested a low dose of viagra after removal of the catheter could help to speed up the return of erections. I understand it is believed the viagra stimulates blood flow to the nerve bundles.

One other side note: When the catheter was removed, including the tape securing the catheter tube to my right thigh, I had a rash/irritation on my thigh caused by the tape. I've got to figure out how to treat this problem. It itches.

That's it for now.
Posted 8/14/2006 8:24 AM (GMT -6)

SJC - sounds like you're doing great - you should be very proud! My husband is post-op twelve days and post-cath four. It's such an emotional uplift when the catheter comes out, isn't it? Had very few dribbles so far, but we keep waiting for a gusher as this seems too good right now.

I'm sure other folks are better versed in treating the itching part, although I've experienced latex reactions and Solarcaine or an anti-itch cream sometimes helps. Also, the triple-antibiotic cream used during the catheter phase works wonders on lots of things. 

Very admiring of your courageous flight home - post-surgery is still quite painful.

Posted 8/14/2006 8:32 PM (GMT -6)
Congratulations on your successful surgery!
 
Your case sounds very much like mine, although my first biopsy in March picked up the cancer with one positive core out of twelve. My slides were sent off to Jonathan Epstein's lab at JHU for confirmation, which exactly matched the initial pathology report.
 
I've seen Partin's picture--he's a big guy--and now head of the department replacing Patrick Walsh, one of the original practitioners of nerve sparing surgery. 
 
I'm nearly continent and will begin working on sexual functioning soon. It's good to be alive and to be a survivor of prostate cancer.  I'm so thankful I live in an age when I can take advantage of all the medical advances in recent years.
 
Age 57  PSA 2.5  Gleason 5   Open Radical Retropubic Prostatectomy 6/21/06  Cancer confined to prostate

Posted 8/14/2006 8:32 PM (GMT -6)

SJC,

I too will have to fly back home on the 2nd day after my procedure. How did you manage to stand up in the plane? The stews constantly chase you back to your seat. How did it feel to sit in these small seats for a long time. Any advise to be more comfortable. I don't think that I will need to have the urinary bag, but I am not sure right now.

Any advice will help me to prepare. I will not have an incision since I am having HIFU however I am sure I will not feel to great either with a suprapubic catherder in my pelvic area sticking out.

DWT

 

Posted 8/15/2006 6:39 AM (GMT -6)
DWT:

People are generally sympathetic to handicapped folks. I obvioiusly appeared handicapped wearing shorts with my catheter lines and bag in view. I simply told the flight attendant I will stand for as much of the filight as possible due to my recent surgery which makes sitting down uncomfortable. She said "no problem". Suggest you preboard and get a reclining seat at the rear (sometimes the very back seat against the bulkhead does not recline.) Also, sit on a pillow. Take some pain meds before the flight. Once your reach cruising altitude, stand in the back galley and walk around as much as possible (plus the walking is good to prevent closts after surgery....you may not have an issue with this since you are not having surgery per se.) Hope this helps you, DWT.
Posted 8/15/2006 8:36 AM (GMT -6)
Ah,

But DWT is having surgery. Not a big open incision but surgery just the same. Treat it in similar fashion even though the hole is very small. DWT will be treated for some moderate urinary and bladder discomfort, not for clots really. I can see the possibility of a small clot around just the site area but not a vascular risk. The HFIU can be quite uncomfortable in its early post treatment phase. Instead of having to explain to the flight attendent you had HFIU DWT, just say surgery for prostate and bladder and its necessary to move about some to prevent complications.... they'll understand. Covers it without having to go through some big speech about it. Not a flight to fondly remember maybe but, its short and you'll do fine.
Posted 11/3/2006 2:38 PM (GMT -6)
This was my first thread on this forum. I have made a few since this time with the intent of helping others. We talk about many issues, but sometimes we forget about the main theme to all of this....This thing is curable! I am reminded of this today b/c I just received my first PSA report post surgery (three month mark): <0.1, the lowest score you can get. I am experiencing an emotional moment. I know I am blessed. I wish my good blessings for all.
Posted 11/3/2006 3:40 PM (GMT -6)
Congrats SJC This is truly good news and why we went through this.God bless
Daveed
Posted 11/3/2006 7:34 PM (GMT -6)

  tongue   Yea !  ~   SJC,

 

1st    PSA…   !!!~~~>>>  Woo~Hoo  <<<~~~!!! Undetectable

 

Cause  for   celebration!!!!!  Definitely!!!     

What a wonderful day it is ~ each and every-day….   

Enjoy it to the fullest. 

Yippeeeee!!!!!! From  Lee & Buddy

*     *     *     *     *     *

The ultimate “goal”… we all strive for… Thank you for sharing ~ that your goal has been met….

It is very important to “all ”of us!  This is a way of positive feedback…

A way of showing others Hope… and a way of Sharing.  

J  Caring is Sharing ~  Thank You for Sharing  J

 

 

Hi ~ SJC,

 

Wonderful news!!!!!!!!!!!!!!!!!!! And you have every reason to be emotional… 

We had the emotions flow when we read your posting.

 

 

We’ve met the shoreline on our journeys and can continue to walk with new friends on their new path.  Sharing this information is so important…  It’s part of the Knowledge is Power and Power takes away the fear. 

 

We personally want to thank you for all the postings you made in regard to your journey with prostate cancer….. and truly look forward to your continued sharing of your journey ---- cancer free!!!  This has been our #1 goal and we’ve both reached it!!!  And so have so many others  

 

I’m really glad you popped your journey back up to the front ~ instead of making a new Thread….  After looking back at it I realize I was away from home for 17 days in August and this was the time you did your postings….  I obviously didn’t go far enough back when I got home to get updated on new postings.  Limited computer access during that time.

 

I’ve read your postings on other threads and for the longest time I thought you were an oldie to the group!!  J But you aren’t…. WOW… you’ve done extremely well haven’t you!!!  And taking time to share your knowledge has been truly appreciated.


Tomorrow Nov. 4th will be our 7th month since surgery and we continue to take one day at a time and enjoy each to the fullest. 

 

Sending extra warm hugs to you!!! 

In Friendship,  Lee & her Buddy

 

P.S.  Born and raised in Denham Springs…. Between Baton Rouge and New Orleans… J

Last 21 years in North Carolina!  Heading down Nov 30th to catch a cruise so I’ll send a special hello from the air as we land in N.O. J

Post Edited (bluebird) : 8/2/2007 8:22:24 PM (GMT-6)

Posted 11/4/2006 3:51 PM (GMT -6)
Awsome keep it up and have hope and you will continue to do well and recover sounds like your trying hard
Posted 1/26/2007 12:23 AM (GMT -6)

Hi! SJC ~

 

Just a short note to say…. “Thank you for your kind words”…

We have always respected your responses in this forum…  and when we saw your comment in a recent post…

Partial Quote:

A Reply Post To : Dr Scardino or Mani Menon ?

JWH: I agree with Lee and Buddy (we think alike often). Consider yourself lucky. You have appointments with two of the best. If you are

 

It gave us a warm heart!! 

In Friendship ~ Lee & Buddy

 

 

 

mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

June 29th ~ PSA Less than 0.1 Non-detectable

Posted 2/1/2007 6:02 PM (GMT -6)
Hello SJC, So glad the news is all good for you. Hope it is continuing and that you are getting back to your routine. I can understand your deep sense of relief and blessing now. Thank you for sharing your experiences which will be similiar to what my husband (CJ)is facing in a few months fom now, after he has lost some weight before his surgery later this year. He is 49, PSA 3.5, Gleeson 4 + 3 = 7, seems localized so far (scans clear), and will have the same op here in Australia. I have also worked my way around other postings and found this one of the best sites available for information for couples. We are more or less fine, although the shock of diagnosis at this age is an experience in itself! However we have been blessed too with good news from the time the diagnosis was made just before Christmas. Thank you also to others who have posted, and especially to Lee and Buddy whose kind and refreshing words (and information) is really (really!!!) helpful, and is spread all over the place! I look forward to sharing more as the weeks go by as this is my first post. Best wishes SJC. May you have continued good health and good results, and recovery. Kind regards, Lana (from Australia).
PS. My wonderful husband (of 6 years) is experiencing the early stages of Pca diagnosis (8/12/06) at 49. T1c, Gleeson 7, RP scheduled for 17 April 07.
Posted 8/2/2007 9:15 PM (GMT -6)

On 2-4-2007 permission was granted by Lana to copy and paste 7 postings that were essential in getting her to start her own thread!!!  They were transferred to Creed_three’s *Lana & CJ’s personal thread:   Hello from Creed (49 years at dx)

 

On 8-2-2007 I have deleted the postings from SJC’s thread (The 7 postings were a Welcome to a New Member to start her own personal thread and she did!!!) 

 

v    bluebird ~  Moderator for Prostate Cancer Forum

Posted 8/2/2007 9:16 PM (GMT -6)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

A year cancer free!!!

 

An anniversary really worth celebrating!

Just a little note to say “Thank You for You”…. :-)

 

Hi ~ SJC,

 

Your postings are few and far between.  (101 over the past year!)

 

What I’ve learned from you is this…  You “share” when a posting touches you!!!

 

Your message postings  ~  come from your prior experience.  One that you are so willing to share.  One that has deep feelings and thought!

 

Thank you for you!!!  It’s a nice feeling to know you are always there ~ when we need you!

Thanks for staying close… 

 

Heartfelt Appreciation from ~ Lee & Buddy

 

J  Caring is Sharing ~  Thank You for Sharing  J

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

mama bluebird - Lee & Buddy… from North Carolina

J  We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

 

Posted 8/4/2007 6:41 PM (GMT -6)
Dear SJC,

Thanks for starting us off here! It was the most important step on our recent experience of understanding prostate cancer surgery. So glad you are celebrating good health one year out. Happy days to you and yours. Lana & CJ.
Creed_three
Lana posting for husband CJ (49 years). First PSA 3.5 (Nov 06). Open Radical Prostatectomy on Tuesday 17th April 2007. Gleeson 3 + 4 = 7. Confined to prostate. PSA 0.01 (June 07)

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