Puget's Passage

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puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/18/2007 5:41 PM (GMT -7)   
I have been following this forum for several months, generally passively, sometimes with a comment or two, usually with questions rather than insight.  Finally, Mama Bluebird had had enough of this hangin' around and suggested that I start my own thread.  I've put off starting, primarily to get my thoughts in order.  (It's amazing how much I had forgotten -- or perhaps surpressed -- since my diagnosis), but also because I'm not sure what I can offer than hasn't been expressed by others.  But realizing that each of our journeys is unique in least in some respect, here goes. 
 
THE PHONE CALL
 
I had had routine PSA's for several years.  I can't remember the early scores, but they were consistently low enough that there never was an issue.  Prostate cancer?  Sure, I knew it was out there and "one of the most frequently diagnosed cancers for men," but really, I never gave it a thought.  That is, until 2000.  In the space of three months that year, my brother (9 years older than me), my brother-in-law (3 years older than me) and a friend (same age) all got the bad news.  (Interestingly, they each chose different treatments.  All are doing well, by the way.)  Even then, I really wasn't concerned.  Early this year, I had a routine physical.  As usual, my dr had ordered blood work to be done prior to the exam.  He told me that my PSA had risen from 1.85 in 2004 to 3.43.  Could be nothing, he said, but to be safe, he recommended a biopsy and referred me to Dr John Corman at Virginia Mason Hosp in Seattle.  I was a bit concerned, but 3.43 was nothing, right?  My brother-in-law's had been over 12.  Probably just an anomalous reading.
 
I saw Dr. Corman a couple of weeks later.  DRE was negative.  He explained that I could wait and watch and also that there was another blood test he could do.  BUT because of my brother's PCa, he thought a biopsy was probably the right thing to do.  I agreed, and a few days later, he performed a 10-core biopsy.  Other than the initial indignity, the procedure wasn't nearly as uncomfortable as I'd feared.  He couldn't see anything of concern on the video, but commented that "the devil's in the [microscopic] details."
 
Over the next few days, I wasn't worried.  Actually, I was more concerned that I was still bleeding through my penis - and in fact had stained a new set of sheets.  (D*mn stains still won't come out.)  The PHONE CALL came on Thursday of the following week.  One core had been positive.  A small (1 mm) nodule, adenocarcinoma -- non-aggressive, slow-growing.   I had just come out of a meeting in another office, and I remember standing in the elevator lobby for several minutes after the call -- in absolute disbelief and shock.  Me?  I had cancer?  Can't be.
 
MAKING THE DECISION ON TREATMENT
 
I saw Dr. Corman again about a week later to discuss treatments.  He'd also scheduled a visit with a radiologist to discuss alternatives to surgery.  Watchful waiting?  Surgery?  Seeds? Radiation?  I remember both drs asking if I had any questions.  I said no.
 
For the next three weeks, I put the whole thing out of my mind.  A BIG case of denial. I had told my family, of course, and word was passed to a couple of close friends.  I remember getting a phone call from one of them to express her concern.  Incredibly, I acted as if there was absolutely nothing wrong.  I even stammered something to the effect of "Why are you calling?  This is no big deal."    I'm not even sure I thanked her.  What a jerk!  I had asked Dr. Corman when I needed to make a decision.  He reassured me there was no immediate crisis, but I should probably make up my mind in a couple or three weeks.  If I chose surgery, there was a two month wait.  TIME'S UP!  I was in a daze.  Then I discovered this forum. . . Then I bought Dr. Walsh's book. . . Then I got scared.
 
I stayed up all night reading Walsh.  I spent hours reading the HW posts.  I was upset about the cancer.  Dr Corman had reassured me that my cancer was treatable.  Better than 90%, he said, for no recurrence.  In fact, at one point, he said "I have many patients who would give their right arms to have your diagnosis."  But I was terrified about the possible side effects.  I cried -- yup, cried real tears -- when I read and for the first time understood and appreciated that this was no joke.  Cancer is a b*itch and there are no easy answers.
 
At the end of the day, my decision was based on some practical realities.  First, seeds were not really an option.  Dr. Corman estimated my prostate size at more than 63 cms, much larger than average.  At that size, seed implantation was unreliable.  Before seeds could be implanted, I would have to go on hormone therapy for several months to shrink the prostate, and hormone therapy didn't always work.  OK.  Seeds were out.  I'm not taking any chances that some part of my diseased gland is going to survive and reproduce little baby cancers.  (As it turns out, my prostate was a whopping 90 cms!  Nothing to worry about in and of itself.  "Just like having a big nose or big feet," the good dr assured me).    
 
Radiation.  My brother chose this treatment and, as I said, is doing well 6 years later.  Well, kinda.  Dr Corman explained, and my brother confirmed, that while bowel incontinence is generally not an issue for most patients (and urinary incontinence is rare), there is a long-term issue with sexual function.  As Dr Corman explained, for most surgery patients, ED is a problem at the beginning and improves over the next 18-24 months.  Virginia Mason's stats indicate that 72% of surgery patients with bilateral nerve sparing regain "what they had" within two years.  With radiation, however, the curve heads in the other direction.  ED is not generally a problem at first, but as scar tissue develops, sexual function suffers and many men see a decline over time.  As Dr Corman put it, with both treatments, what you have at 2 years is "probably" what you're going to have forever.  I decided that I'd rather have the curve heading up, not down (pun certainly intended).
 
The bottom line for me was age and not wanting one single cell of cancer left in my body.  I was just past my 60th birthday when diagnosed.  Statistics generally indicate that all three threatment options have about the same recurrence rates over 15 years.  After that, no one really knows.  Assuming I'm a statistical average male, I should live to be 78 -- more if I quit smoking (I did) and lose some weight (still working on that).  I'm not very adventurous, and facing the prospect of a recurrence in my twilight years was not something I was comfortable with.  Just as important, I JUST WANTED THE D*MN THING OUT!
 
So, I scheduled surgery for June 7.  I slept like a baby that night.
 
THE SURGERY
 
You know, I wasn't a bit worried about having the surgery.  Slept well the night before -- after completing the purging process, of course.  I checked into the hospital at 10 am and was called into surgery prep about 30 minutes later.  Then  I laid there and waited and waited -- and waited some more.  I started getting anxious, and when I get anxious my bladder shrinks to the size of an anemic pea.  I went to the bathroom at least three times before I was wheeled into the OR.  I remember talking to the anesthesiologist about something I'd recently read -- that one of the drugs they give you paralyzes you completely, including your ability to breathe (thus the respirator business).  Don't worry, she said, we have lots of other drugs that can bring you back in a jiffy.  Great.  Just make sure you grab the right vial.  I also remember the male surgical nurse introducing himself and explaining he was going to shave me and get me ready.  I told him to be good to the little guy, and with that drifted off to la-la land.
 
Surgery lasted about 2-1/2 hours and I was into recovery by about 3:30 pm.  I think I was taken to my room about an hour later -- things are a little fuzzy.  Not much pain, at that point at least.  My family came up a few minutes after I was settled.  I was pretty groggy, and finally told them to go get some dinner.  All I wanted to do was sleep.
 
I woke up in early evening and felt -- great, actually.  I started walking up and down the halls that night.  Actually made a couple of rounds before turning in.  General anesth was wearing off and I discovered my best friend for the moment was the automatic morphine drip gizmo.  A little bit of pain, a little dose of the good stuff, a little bit of pain . . .
 
By the next morning, I was feeling pretty good.  Dr came in about 11, told me that everything had gone very well.  They'd had to make one of the incisions slightly larger to tug that hummer of a prostate out, but both nerve bundles had been spared and looked good.  Visual inspection of the prostate itself showed no generalized cancer, and lymph nodes looked completely clear.  So far, so good.  One rather unpleasant thing was when they removed the drain tube.  It hurt, but not really that much, but what a weird feeling.  For one thing, I didn't realize it stretched across my whole abdomen.  It felt like a snake sliding across my innards on its way out.  Definitely an OOUCH! but only lasted a few seconds.  What a way to say good-bye.  I was home by 3 pm.  Then the fun began.
 
RECUPERATING AT HOME
 
I hated the catheter.  It wasn't really all that uncomfortable at first, but it was messy and I never could get the little tape do-dads to work when I needed to use the smaller "travel bag."  I probably ripped off more hair than a barbershop changing that d*mn tape.   By the fourth or fifth day, however, I felt like I had a razor blade stuck up there.  The catheter was REALLY irritating my insides.  Fortunately, I only had to put up with this for the last day or two.
 
I had bloody urine for the whole week I had the catheter in.  The nurse had warned me about that, so I wasn't concerned.  What no one had told me about, however, was the painful bowel movements!  Oh .. my .. God.  I don't want to scare any of you newbies, and I'm told not everyone experiences this, but trying to have a BM was awful for at least the first 3 days.  Not only that, but when I strained to, you know, get things to move, I bled like a stuck pig through my penis.  I mean, really bled.  Called the dr.  "Not to worry.  Just let us know if you produce large clots. This, too, shall pass."  It did, gradually, although I continued to leak a little blood from the front when using the back for the next 2-3 weeks.
 
PULLING THE PLUG
 
As much as I hated the little sucker, I was REALLY worried about removing the catheter.  THE MOMENT OF TRUTH HAD ARRIVED.  Fully expecting the worst, I took three pads with me to my appt.  I laid down and the nurse told me to take a deep breath and breath out slowly.  It was out.  Another ouch.  But -- no drips.  I stood up.  No drips.  Got dressed, with a pad in my shorts.  No drips that I could feel.  Stopped in the men's room as I left the office.  No drips, and I actually pee'd like normal.  What a great beginning -- but it was only the beginning.
 
Pads are a good thing.  Despite my good begining, I didn't have full control.  I went through probably three, sometimes four pads a day for the first couple of weeks.  I found that as I increased my activity level, I leaked more.  Even on a lazy day, I got pretty tired by late afternoon, and I'd leak more then, too.  I did my Kegel's religiously.  Gradually, things improved, and I was down to two pads, and then one.  Exactly 4 weeks after my discharge, I went to work "bare" and have been almost completely dry since.
 
I have had a couple of minor accidents, so I keep pads in my bag and at the office, but I think I'm pretty much back to normal.  I read somewhere, perhaps on a HW thread, that it's not unusual to relapse a little a couple of months out.  That happened to me.  Things were going well, and suddenly I started leaking again for no apparent reason about three weeks ago.  Started up on the Kegels again and made sure that I emptied my bladder frequently.  Dry now again, and keeping my fingers crossed.
 
I went back to work 2-1/2 weeks after surgery.  That was probably too soon.  Dr Corman had said that it would take at least 6 weeks for my body to heal and I should take it easy.  I could return on an "easy schedule" after three weeks, if I felt up to it.  I have a desk job and I figured that work wasn't any more strenuous than staying home, right?  Not exactly.  I never realized how many times I got up, ran to my secretary or to the copier or into another office for a conference.  By mid-afteroon I was bushed!  I'd go home and fall into bed around nine and sleep for 10 hours.  It probably took two months before I really felt I was back to full strength.  Had I to do it over again, I would have stayed home an extra week. 
 
WHERE, OH WHERE, HAS MY LITTLE DOG GONE
 
Up to this point, I've been batting pretty close to 100.  My "thang" was pretty tired for the first couple to weeks, but considering all the abuse he'd taken, I wasn't surprised or worried.  Besides, I was too tired to think about it.  When I saw the dr for my first post-surgery check-up, he put me on 50 mgs viagra for "nerve stimulation following surgery."  (That's what the prescription says -- really.)  Recalling the statistics that 70%+ of patients with bilateral nerve sparing regain an erection "sufficient for penetration"  (I love that), I figured I was home free.  A little blue pill and wham!
 
It hasn't happened.  I took the first dose, and then a second three days later.   OK, so my buddy's still worn out.  After a couple of weeks, I was in a panic.  They said to call if I had any questions, so I called.  I have a BIG QUESTION!  Why is nothing happening?  My dr's nurses are GREAT!  (My dr's great, too, but his specialty is surgery, not bedside reassuring.)  Nurse Joanie (I can't believe I've gotten comfortable telling a woman about my erection issues.  My wife says welcome to the club.) said they don't generally see much of a response initially, and that it's not unusual to have little or no response for the first three months.  OH, GREAT.  WHY DIDN'T ANYONE TELL ME THIS SIX MONTHS AGO!!  WHAT about THE 70%???  Joanie gently reminded me that the 70% was over 18-24 months.  Be patient.  Have faith.  Keep trying.  Oh, and up your dose to 100 mgs.
 
Well, I'm being patient, I certainly keep trying, and I try to have faith.  100 mgs has gotten things started, but believe me, it's not anywhere "sufficent for . . ." well, you know.  I saw Dr Corman last week.  He gave me the same message.  "I saw your nerves.  You're going to be fine."  One disappointment, though.  I asked him if I could ever expect to be "sufficient for" without Viagra.  In classic surgeon-speak, he said, "It will be better with Viagra."  Is that a yes or no?
 
* * *
 
Well, there you have it -- my journey so far with this cursed disease.  Despite all the frustrations -- and still some fear (I don't have my first post-surgery PSA until next month) -- I'm really lucky.  I know that things could have been and could be a lot worse, and I thank God things have turned out as well as they have.
 
One little blip on my radar screen.  One rather nice side effect of having your prostate removed, for many men, is you can urinate with a full stream (pee*ng like a 17-yr old, as my brother-in-law puts it).  about 4% of surgery patients experience a build-up of scar tissue at the point where the urethra is re-joined to the bladder.  I'm in the 4%.  about two weeks ago, my stream started getting slower, and slower and weaker and weaker.  So, I'm scheduled to have a "cystoscope and dilation" in a couple of weeks.  They don't cut anything out - just stretch the muscle and open up the area of scarring.  Dr. Corman assures me that I'll be "pee*ng like a 17-year old soon."  Too bad I can't be doing something else like a 17-year old.
 
To you newbies:  Being told you have prostate cancer IS scary.  Ther ARE really tough decisions to make.  But there IS life - good life - after (and with) PCa.  Just read the other threads on this forum.  My family, friends and co-workers have been great, but as I've said on other's threads, I couldn't have gotten through the last five months without this forum.  THANK YOU to all who have shared your own juurneys.  Like we say, this is a club that none of us ever wanted to join, but having had no choice in the matter, I wouldn't trade you guys for anybody!  
        
 
 
 
                       

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 8/18/2007 6:27 PM (GMT -7)   

Puget:

What a great job on your thread - you certainly have a way with words - even though this is a serious subject, I had to chuckle from time to time.  The fact that your brother had Pca is a good point - stats show that if your father had Pca you are twice as likely to have it and if it's a brother(s) the odds are three times. 

Again, great thread and good luck on the ED issue.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001 - No side effects.
6yr PSA - 0.19
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 8/18/2007 7:32 PM (GMT -7)   
Hey Puget,

Great job on the summary, and I'm really glad you are doing well.

Keep up the good work with the ED issue. It will get better - even old guys like me get it back with a little help from the pharmacy. Better living through chemistry.

Looking forward to hearing of your further progress...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started .10 ml Tri-Mix on 8/7/07.  It works!!!
Next PSA and T tests on 10/17/07
 
"Patience is essential, attitude is everything."
 


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/18/2007 7:54 PM (GMT -7)   
You know, I wasn't aware of the statistics on sibling PCa -- even after all this. Wow, three times as likely if your brother had it. No wonder my dr recommended the biopsy. I guess the family history info we give to our drs is really important.
Puget
60 yers old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/18/2007 8:24 PM (GMT -7)   

Hi puget,

What a great post!  I enjoyed the details of your story.

Thanks for the advice of getting your strength back up prior to going back to work.  You've got me thinking about asking my doctor to extend my disability for one week.

All the best,

Idaho

 


Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate, <5% volume
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6, <1% volume
Working to get back into good shape
Waiting to take that first post-op PSA

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 8/18/2007 8:32 PM (GMT -7)   
First and foremost, thank you for the original post. My father is scheduled to have a radical with Dr. Porter at Virginia Mason on August 31st. He too will be having the da vinci operation. It's great to hear that your experience for the most part was positive, considering the situation.
I am curious if you have any tips regarding recovery that might be helpful. My father is going to be staying with me (he lives out of state) until his catheter is removed and I would like him to be as comfortable as possible. Anything from clothing, pads etc. would be truly appreciated.
His PSA was a 5.5. Gleason score of 4+3. Dr. Porter believes that he can spare the nerves on the left lobe and will know more once he has the MRI done two days before the surgery. Many thanks and best wishes!

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/18/2007 9:01 PM (GMT -7)   
Dear Doting,
 
What a blessing you'll be able to take care of your father.  I know it'll be good for both of you!
 
In the hospital, I wanted my own robe so I could walk around when I wanted to.  It was difficult to tie the hospital gown, especially while I still had the IV in.  It was much easier to put on my own robe and gave me more privacy while walking among the public visiting their loved ones.
 
When your dad wants to get up for a walk in the hospital, have him ask the nurse or assistant to empty the catheter bag before he walks.  It can get heavy to carry with all the urine in it.
 
Also, when he gets up, have him watch the JP drain (attached to drain the fluids after surgery).  I hit mine a couple of times and it was a little ouchy.
 
At home, the first problem was where to hang the catheter bag when in bed.  We took a one of the rings you get at a stationery store that looks like a three ring binder ring and attached that to the mattress handle.  I had an easy place to hang my catheter bag when I went to bed.  It needs to hang below your body, of course, to drain properly.  He may need help emptying the bag the first couple of days.  He should be able to change to the smaller "leg bag" during the day.
 
Sleeping.  Everyone is different, but I needed to sleep on my back to avoid messing around too much with the catheter tubing.  Therefore my wife got me several pillows to change the elevation of my back and to support my legs when needed.
 
I found myself drinking a lot of fluids as well (mostly water) to keep the urine running clear. 
 
Luckily, my wife forced me to rest a lot.  He should do the same.  He should not lift anything more than 10 lbs.
 
He may need some Milk of Magnesia when he gets home or such to keep the stool soft and frequency regular.  A hard stool causes pain and some bleeding.
 
The doctor's office should have several sizes of pads when the cath is removed, but you may wish to buy a few of the men's version of the "Depends" pads and have them on hand.  It is shaped a little better for men (wedge shaped) and that is what I was wearing for the first week and 1/2.  Now I'm wearing the "unisex" pads (Poise brand).  I buy the max protection size from Costco and save some money.
 
The level of incontinence varies for each individual, but I was dry during the evening each night.  Daytime, plan to use several pads per day and when he travels, he may want the "full meal deal" depends which are more like a diaper.  When he gets home, he may be able to use just the pad.  Folks on this site have a lot of wonderful info on incontinence and what to do about it.
 
You're going and your father are going to do great.  Just ask all the questions you can pre-op, you're in the driver seat.
 
Hope this helps a little.
 
All the best,
 
Idaho
 
 
 

Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate, <5% volume
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6, <1% volume
Working to get back into good shape
Waiting to take that first post-op PSA

puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/18/2007 10:22 PM (GMT -7)   
Doting Daughter, how lucky your father is to have you! I'd echo virtually everything Idaho advised. I didn't think to bring a robe with me to the hospital, but what a great idea. At home, I wore loose-fitting sweat pants most of the time, or shorts. I also bought some large pads -- the size of the pads you use to change babies on when traveling. I leaked a bit from the catheter where it entered the penis, and I didn't want to take the risk of soiling the upholstery(my urine was pretty bloody the whole week). I generally just let my bag lay on the floor when I was sitting or laying down, so I'd use one of the large pads to protect the floor, too - just in case. Also, my comment about the tape things you use with the leg bag is really true. The ones (3) I got at the hospital were supposed to last me for the entire week, but I found that every time I showered, the things would come off and then wouldn't re-stick. So, I finally used regular old bandage tape. It held pretty well, but I still had to change it pretty often -- a bit of a rip job on the old leg hairs. Idaho's solution to where to hang the bag at night also is a great one. I tried clipping it to the sheet, but that didn't work. I finally just laid it on the floor. The length of my tube was enough that I could still turn over. I guess it depends on how high your bed is off the floor. All in all, the week the catheter was in was not as bad as I thought it might be -- except for the irritation that developed the last couple of days. But I was able to move around pretty well. Because my catheter tended to leak, I didn't go out to the store or take too many walks. Others have had no trouble with that, however. Good luck. I'm sure you and your dad will do fine! Stay in touch and let us know how it goes. We'll be thinking of you.
Puget
60 yers old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 8/19/2007 6:30 AM (GMT -7)   
Puget - Thanks for sharing your story and it just proves that everyone IS a little bit or alot different. I have to say, you did a great job - I even laughed a few times at the picture you painted...to me that's good reading!
Your recovery is going so well - continue to take care of yourself.
Will be looking for your first PSA...sounds like it will be a good one!

All the best,
Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 Distant lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 8/19/2007 8:48 AM (GMT -7)   
Puget & Idaho-
What great tips! Thank you both so much! His birthday is the next week, so I will pick him up a robe! It really is such a blessing to have your feedback! Many thanks and best of luck! I will keep you posted and can't thank you enough!

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/19/2007 9:50 AM (GMT -7)   

Hi Doting Daughter,

 

(By the way, Puget, I'm apologize that we're not keeping your thread more pure to your topic)  :-)  

 

Puget remarked on the leg bag with adhesive straps or tape. 

 

I guess I was lucky, my leg bag came with adjustable elastic straps and it was very comfortable.  You may ask the hospital which kind of leg bag they usually "give out" and if it is the adhesive strap variety, you may wish to call a medical supply store in your area and see how much one with the elastic straps would cost.  I imagine your father's insurance would pay for either one.

 

Remember, we're here for you.

 

Regards,

 

Idaho


Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate, <5% volume
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6, <1% volume
Working to get back into good shape
Waiting to take that first post-op PSA

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 8/19/2007 9:56 AM (GMT -7)   
Idaho - perhaps you could help Doting Daughter start her topic and Lee could move these posts over?

Just a suggestion,
Susan

puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/19/2007 10:20 AM (GMT -7)   
Hey, there's no pure topic as far as I'm concerned. All questions and issues that come up in the posts are fair game. I didn't realize there was an adjustable strap version of the leg bag. Doting, I would definitely check it out. I continue to learn stuff here!
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 424
   Posted 8/20/2007 12:35 AM (GMT -7)   
Hey puget,

Great job on the passage post!! I need to go thru all my ramblings and consolidate it too... You have given me a great example to follow!

Doting,

Avis & I found some great velcro elastic straps at the local pharmacy in Monroe for the catheter/bag... It really simplified the cleaning, changing, and showering procedures. I ended up using the "large" bag all the time. I also adjusted the bags string hanger to fit it inside my loose fitting pants and tied to a belt loop for walking and traveling. A little lubrication at the cath tube/end of penis helped me a lot when walking. Bluebirds help section has a lot of info for Mr Hang and othet items... :-)

God Bless All!

pasayten
Age 59 y/o - Last 3-4 years of annual general health checkups - PSA 5-6
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 Diagnosed as T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx,   approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks post-op incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
7/30/2007 ED improved to about 60% erection and "functional". Only using 50mg Viagra generic every 2-3 days.
 


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/20/2007 12:51 PM (GMT -7)   
By the way, Pasayten, I took your advice and looked into the generic Viagra, Caverta. Ran it by my dr, who at first said it "wouldn't work." When I showed him it was a true generic sildenifel (sp), he just shrugged and said he had no way of knowing if it was effective or not. So, I went ahead and ordered three months supply -- at little more than half the cost of one month of Viagra. I'll let you know if it works for me.
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 424
   Posted 8/20/2007 1:35 PM (GMT -7)   
Puget,
 
Yes, the 100mg @ $2 was 1/6th the cost for me as my health plan covered $0.00 of the $11-13 Viagra.  :-(
I have not experienced any differences that I can tell and cut them in half just like I did for the Viagra's to get my 50mg dose.  And now I am not worrying about the cost of pills for ED...  This has relaxed me after taking a pill and wondering exact time to try for maximum performance.    Definitely took the edge off $$ and timing worries...  Which seemed to help with the ED recovery overall...
 
pasayten

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/20/2007 5:38 PM (GMT -7)   

Hi puget, pasayten,

How did you order Caverta?  On the Internet or via mail order?

Idaho


Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6
Working to get back into good shape
Waiting to take that first post-op PSA

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 424
   Posted 8/21/2007 12:22 AM (GMT -7)   

Idaho,

Here is a link to a post I made describing my Viagra generic experience.  It has an additional link to a post where I listed some info I found on the web.

http://www.healingwell.com/community/default.aspx?f=35&m=856007&g=884122#m884122

 

pasayten

 

 


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/21/2007 8:49 AM (GMT -7)   
Hi pasayten,
 
Got it.  Thank you very much!
 
Idaho

puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/21/2007 11:00 AM (GMT -7)   
Just an update on my stricture issue. When I met with the dr, he commented -- in passing, really -- that I might see "some temporary setback" as to incontinence following the dilation procedure. I didn't think much about it at that moment and went ahead and set a date. The more I thought about his remark, however, the more concerned I became. As reflected in my prior post, I've been very lucky and haven't had an issue with incontinence -- dry since about 4 weeks post surgery, with only the occasional accident. Like all of us, after addressing the cancer issue itself, the prospect of being incontinent was really scary. I remember worrying more about that than anything else -- how bad would it be? would pads really contain the urine? would there be an odor problem? how could I dispose of pads at work discreetly? All kinds of things roiled around in my head, especially at 3 in the morning. So, I contacted dr again yesterday, and unfortunately he confirmed that after the dilation, many patients experience "weeks" of incontinence and that it could be "several months" before full control is achieved. Great, here I am facing the same issue again. Maybe I won't be so lucky this time. I've decided to put off the procedure. Assuming it doesn't get any worse, I can live with a weak stream. D*mn this disease!
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 8/21/2007 9:19 PM (GMT -7)   
I just want to thank you guys for taking the time to share all of the experience.  I'm a few weeks away from surgery and I have been thinking of a lot of details that the doctor doesn't tell you.  I don't embarrass easily, but I'm thinking that the stalls in a public restroom don't cover you all the way to the floor and the pads, well, isn't it obvious?  I guess that's the least of our problems, but how do you guys handle it?   Keep the info coming.

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/21/2007 9:54 PM (GMT -7)   

Hi riviera,

Good question about "restroom etiquette" for handling and changing pads and such.  I know it is not a typical situation for men so I'd like to know as well.

In addition, perhaps we ought to ask the women in this forum for advice or ideas, since they have the most experience in this department! :-)

Idaho


Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6
Working to get back into good shape
Waiting to take that first post-op PSA

oakley
Regular Member


Date Joined May 2007
Total Posts : 358
   Posted 8/21/2007 11:18 PM (GMT -7)   
I had never thought of this dilemma. I think it is time that men have those nice boxes in each stall just like we do. I am going to write a letter to the editor of the papers in my state asking that business owners take care of this. I am certain they will. God bless this great place for opening peoples eyes to important matters such as this. Annie 

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 424
   Posted 8/22/2007 1:17 AM (GMT -7)   
Hello all,
 
Regarding incontinance and pads...  For the first 9 weeks, I could sleep all night dry and a long time sitting dry.  Walking around I leaked like a sieve... 5-6 pads a day...  For most all of the 9 weeks.  Then overnight and the next day or so it completely reversed to one bairly touched small pad a day.
 
That being said, for 9 weeks I had to address the pad issue...  1st week or so, I was shy and embarressed...  Not really wanting to talk about it with friends or family other than my wife.  Didn't want to tell friends about "my problem".  Then I began to realize that heck, I just beat this cancer thing and that was the number one thing.  Continance and ED were the number 2 and 3 items.  Like many though, my initial worry pre-op was not the cancer, but continance and ED...  Go figure...  embarassment or feeling of inadequacy worried me more than if PCa killed me???   I am sure that many women who have had to fight breat cancer go thru similar issues with breast removal...  and the greater complications with chemo besides!  
 
I decided to talk openly about stages of recovery with friends and family and old work friends (still talk to a few even though I am retired).   Even kind of did it in a jokung way...  maybe to overcome my initial embarassment.  I got to the state where I could just get up and go change a pad...  If I needed to "excuse" myself, just said "time to go change a pad".   Also mentioned in discussions all the forms of recovery that need to take place after prostate surgery.  Some friends thought prostate removal included testicals...  Others thought I would have to where a catheter bag forever...  So, my embassasment ended up turning to discussing it openly and providing current information about PCa and treatment options, complications, etc...   Women, especially those who have children, readily understand the issue of continance and kegals!!!  In fact, I have also discussed it with some who have not had children and knew little about PCa, kegals, bladders, and valves...  but were interested in learning the information.
 
The ED complications and recovery stuff was harder to talk about...  but also rarely came up in most of the dicusssions except in the general parameters of yes it is one of the recovery steps, the statistics,  and the average 1 or more year time frame.  This is also a more private issue and really does not need to be discussed openly except with your wife or partner.   I think this is also more embarrassing and difficult to talk about with guys...  some male aquaintance will end up asking you "if it still works".   Goes back to our high schools days and earlier years where we used to evaluate our worth in terms of how big of erections we could get and our sexual prowness...   and you either brag about it and/or get teased by it.  Comes from the ridiculous images and "lessons" we are taught through the media...  tv shows...  advertising...  If flippantly asked by a friend, I would respnd  like "50% and having fun working towards 100%"...   But if the question comes up in a valid and concerned way, I tell them straight up my journey thru that also...  Basically, I now discuss things with friends just the way we discuss them here on HW.  
 
Now, back to the continance/pads issue...
 
When out an about, I always carried a zip lock bag(s) and an extra male guard pad(s) in my pants pocket just in case I needed to change somewhere.   I got so I could discretely change in the car, even in a crowded parking lot...  Or while moving down the road if my wife was driving :-) ... On a hike with friends and family by just turning away a little and swapping the pad out.   Heck, I even changed a few on top of a 17ft ladder while working on our new house.  Looser fitting pants makes it very easy to do.   I got where I could swap one out in about 5 seconds.  The new "guards" can hold a LOT of urine and have good odor control.  I never used the underwear...  Just the "guards" with the sticky strip on them.   I never had a significant "leak" outside the pad that showed...  just once or twice got my cotton briefs underwear a little damp.   I also kept an extra of those in the car or in a drawer where I was located any significant time.  I was always careful to fully empty my bladder when urinating and always made sure the penis was properly "tucked" in the pad.  Would check it once in awhile also.  Use the "generic" guards which cost around $8 for 52 of them.  I also kept handiwipes or baby wipes around to also wash/clean up as needed.  That also helps a lot with odors and rashes (never did get any)...   Just kept putting dirty items in zip lock for later disposal.
 
Anyway, the bottom line is that the more I openly discussed the issues when any interest or questions arose, the less it embarrassed me...   the less if affected my life and the activities that I wanted and was able to do... and the more informed and understanding friends and family have become of this nasty disease...  
 
God Bless All!
 
pasayten

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/22/2007 8:22 AM (GMT -7)   
Hi pasayten,
 
Great summary of your methods! :-)
 
I like your openness and honesty!  Thank you.
 
Idaho

Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6
Working to get back into good shape
Waiting to take that first post-op PSA
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