PCa and TRAVEL issues

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English Alf
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Date Joined Oct 2009
Total Posts : 2217
   Posted 11/11/2009 8:50 AM (GMT -6)   

 

PCa and modes of transport

 

How are we all managing to get around? What are our journeys like?

 

I ask, as this week I went to the hospital in Amsterdam for a blood test and I went by train. I had to plan it a bit more carefully than I would have done before treatment, but it was okay (I made sure I had a seat in the part of the train near the WC for instance). My biggest question was pads. I haven’t worn a pad for several weeks now, but I decided I was confident enough not to wear one “just in case” and I had no leaks or dribbles. (I do still always have a pad with me though,)

 

I peed before I left home at 13.20 and I caught a tram (streetcar) to the train station (takes about 12 minutes).

The train journey was about 40 minutes. At about 14.20 I had a pee on the train before it arrived then took a bus (5 minutes) to the hospital.

 At 15.00 I peed at the hospital before I left (because I could, not because I needed to).

I had a drink of juice at the station at 15.15.

I peed on the train on the way back at about 15.55 (that was indeed just in case).

Another tram took me home. I was back at 16.35 and didn’t need to pee when I got in.

 

Thus I was out of the house for 3¼ hours and had three visits to the bathroom. And to be honest I expect I might have gone to the bathroom just the same way on a trip to the hospital before my operation.  

 

 

Anyway, before our treatments we may have used and travelled about in or on some of the following:

 

Automobiles/Cars (as driver and/or passenger.)

Trucks, RVs

Jeeps, 4x4s etc off road

Tractors, combine-harvesters etc

Taxis/Cabs

Trains/Underground/Streetcars/Metro/Subway

Buses/Coaches (For me the most problematic due to the suspension bouncing me so much)

Motorbikes, Scooters, Bicycles

Wheelchairs

Elevators

Skis, Roller-skates, Ice-skates

Horses, carriages.

Sailing boats, Powerboats, Ferries, surfboards

Aircraft, (as passenger or crew/pilot)

Plus miscellaneous things such as racing cars, tanks, warships, road-rollers, submarines, cable cars, bulldozers, hovercraft etc

 

Since my Da Vinci fifteen weeks ago I have managed: a car as a passenger, my bicycle, trams, buses and trains

 

but what’s it like now for other people, what helps, what should be avoided etc?

 

 

Alfred


Age at Dx 48         No Family history  of Prostate Cancer

Married 25 years, and I cannot thank my wife enough for her support.

April 2009: PSA 8.6  DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.

RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.

Partial erections on 1st and 2nd Aug 2009, Catheter out on 6th Aug 2009. 

Dry at night, but wearing pads 24/7

Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.

Left Seminal Vesicle invaded, (=T3b!)

no perineraul invasion, no vascular invasion. clear margins,

Erection 100% on 15th Aug 2009   Stopped wearing pads on 21st Sept 2009

Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.

 

Post Edited (English Alf) : 11/11/2009 7:32:53 AM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/11/2009 9:30 AM (GMT -6)   
Stay off of pogo sticks, stilts, unicyces, or any bicycle that missing its seat!
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 11/11/2009 10:05 AM (GMT -6)   
Six months out and any travle I take must be arranged around fluid intake and knowing where the restrooms are located. Last week my wife drove me to Atlanta and on the way home got lost in downtown Atlanta and couldnt find the interstate. First time I have used the bathroom in a moving vehicle since high school. Glad we had an empty container in the car. LOL, but it is still a different ball game for me at this point.
Michael
Dx with PCA 12/08 2 out of 12 cores positive
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margins not involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only
 started ED tx 7/17, slow go
Great family
Michael


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 11/11/2009 12:49 PM (GMT -6)   
If I am going out in public I severely limit what I drink all day. Even at home, with the toilet night next to me, I still put about half of my pee in pads. I have ridden a bicycle and motorcycle but ended up dropping my load when I lifted my leg up over the seat. When I use the garden tractor I just hose the seat off when I'm done.
I have not flown yet. I am afraid the scanner will detect more than 100 ml of liquid in my crotch. I would be mortified if I had to explain the full pad in public. " Why certainly officer. Feel free to look. Don't worry nothing big is going to jump out at you. "
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/31 14 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 11/11/2009 1:18 PM (GMT -6)   
Started driving the week the catheter was out. One unfortunate pad overflow that week, put plastic garbage bag on seat, cut short shopping trip, headed home.

Commuter train and bus at end of second week. Careful to pee before the up to 1 hour trip.

1 ½ hour car trip at three weeks. Bathroom breaks carefully planned before, middle, and end. No problems

Inter-city bus, 2 hours at two months. Picked a bus line with onboard WC but could have managed without. Did curtail liquids.

Swimming at two months. Asked my doctor about leakage – he laughed, reminded me that urine is sterile and told me to wash my butt.

Bicycle at four months – no extra leakage although my son did have to wait for me at the tops of hills.

Now at 6 months I figure that anything under 4 hours doesn’t need any special thought.

Only one worry, I’ll be in Northern Wisconsin at Thanksgiving and go snowmobiling if the weather cooperates. If I leak, can I pull into a tavern parking lot and drink hot rum drinks, or will they have to get me off the machine with an ice pick?
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

Post Edited (geezer99) : 11/11/2009 11:40:49 AM (GMT-7)


T40
Regular Member


Date Joined Oct 2009
Total Posts : 103
   Posted 11/11/2009 1:19 PM (GMT -6)   
I find that nearly 3 months after I surgery I can pretty much hold it just like I could before. I do have some urge issues when I pass gas or pick up something that is very heavy but have been able to manage it fairly well. I use a paper thin pad at this point. Traveling hasn't been a problem. I have a 4 hour car ride to make later this afternoon and I anticipate stopping once on the way so my wife can go to the bathroom. I will too just to be safe.
Age 40
Pre-op PSA was 5.8 from wellness test on May 19, 09
Follow up test from uro was 4.6 with a 9.3% free psa
Gleason 3+3 in one core, 3+4 in second core of 12 samples taken
Uro recommended Robotic for someone of my age. My research confirms.
Surgery performed August 19th, 09.
One side nerves spared. Nerve graft on other side.
Six weeks incontinence almost over. ED a work in progress but seeing some response.
Post op October 2nd, 2009 All margins were negative. PSA results in a few days.


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 11/11/2009 5:02 PM (GMT -6)   
I have a tip. It requires just a little shamelessness. I can hold everything fine while sitting and driving the car. As soon as I get up, whoosh. So, I look for the most private deserted parking place in the lot,far away as possible from the store, etc., open both the drivers and passanger left side doors, take a quick check around, stand up, and let 'er rip into my travel container. Saves pads, prevents overfilling, and is a good training exercise. Haven't been arrested yet.

Steve

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/11/2009 5:57 PM (GMT -6)   
Steve,

If I was arrested, I would probably get off on lack of evidence. Need a microscope to see Willie.

I found that after a week of riding quads in the Canadian Rockies, that I was leaking less.

My biggest problem is still lifting. Also, when I bring my foot up to scratch my ear, I leak too.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 11/11/2009 6:28 PM (GMT -6)   
I, too, can hold it while sitting. The problem is trying to get the flood into a container when I get up. While sitting, my delivery pipe retracts into my abdomen so when it gushes I get that warm glow flowing down onto my scro**m and landing BEHIND me - into my pants and the floor - even if I am leaning over the toilet. The fluidic nozzle effect works, unfortunately.
I've seen those catch-cup funnels they have for women so they can use urinals. I might be in the market for one.
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/31 14 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 818
   Posted 11/12/2009 10:22 PM (GMT -6)   
Even before surgery, I would take an aisle seat on airplanes, to make it easier to get to the restroom.

But my big achievement was my first post-surgery flight, at about 6 months. It was slightly over 3 hours, and I didn't use the facilities at all! Was quite proud, told the wife, who had forgotten that this was a somewhat big deal.

Now at 11 months, I still have some confusion--can't always tell if I need to go or not.

DJ
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)
4/23/09, 07/30/09 still undetectable!


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 11/12/2009 10:49 PM (GMT -6)   
Interesting stories. I travel alot and am an active cyclist. What I do is when I pass a men's room or rest stop at an interval of time when I know there should be contents in my bladder, I use the facilities. Pre-PCa I would wait until I had an urge (which I do at work or home now) but now it is so easy to evacuate my bladder, so to speak, I don't miss the opportunity. Why risk a problem.
Ted
Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 11/12/2009 11:44 PM (GMT -6)   
So when I p*ssed off the gypsy fortune teller she said;

"May you join a club where men pee in their pants and then tell jokes about it"

I laughed -- there ain't no such thing!
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


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 11/12/2009 11:49 PM (GMT -6)   
I'm an active person and take vacations that are adventurous and stressful, and I've taken 12-hour and less airplane rides - and I've had few issues to contend with. One learns how to plan for the travel and activities and "pad thought" has become easier and routine. Actually, I leak less when I'm the most active.

Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0

 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 11/13/2009 7:30 AM (GMT -6)   
I have a saying now: "Never pass a bathroom without a visit." I pretend it's a site sanitation inspection. "The Kobe Beef was exquisitely prepared, however several hand drying towels were on the floor and the hot water did not run in the third sink from the left."

While I mentioned fear of flying, I have mastered car travel. My leak is so regular I can change a pad like clockwork. Every 4 hours (150 ml) whether it needs it or not. It usually does.
Jeff
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