Traveling for Treatment – Advice

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Tigerfan53
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Date Joined Jan 2011
Total Posts : 929
   Posted 4/10/2011 2:58 PM (GMT -6)   

I will be traveling for my robotic surgery.  After much deliberation I finally decided this is best treatment option for me.  My wife and I will be staying in a hotel with a kitchen for the post surgery catheter time, plus 2-3 days after removal.  Then a 3 hour direct flight home.

 

If any of you that have traveled for treatment have any advice, tips, or suggestions, I’d sure like to hear from you.

 

Thanks


Age 53
Diagnosed Dec 2010
PSA 5.3
Biopsy: 50% in 1 of 12 cores, Gleason 6
PSA 5.6
RRP scheduled for 6/6/2011

compiler
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Date Joined Nov 2009
Total Posts : 7270
   Posted 4/10/2011 3:48 PM (GMT -6)   
I went to Ford Hospital (3 hours away by car) and we stayed in their apartments.

I'm sure others will suggest things to take along. I took boxer-briefs and sweats.

I also took a donut (the kinds you sit on) but didn't need it.

The most helpful item for me was a cane. It really helped me to go from sitting to a standing position.

We also took plenty of food/groceries. In my case, my car had a big trunk. I would suggest you get there in time to give yourself a day to do some shopping.

I wish I could remember what else I took. There were some lists that I perused from HW.

Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .Biopsy 11/30/09. Gleason 4+3. Age: 64. Surgery: Dr. Menon @Ford Hospital, 1/26/10. Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- yes.. PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06; 1/4/11-0.13,3/1/11--0.27. Now doing SRT

davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 4/10/2011 4:29 PM (GMT -6)   
Good for you, Tiger.

I met a few people who travelled great distances so they could pick the surgeon of their choice ( my same surgeon ). I have to admit it takes "guts" because I was so happy to be home with my family and not have to deal with hotels, planes, taxis etc. But you're doing the right thing, picking someone who is really good at this and far away is much better than someone local who isn't or hasn't had the same experience. You get one shot at this and it's good to be with the surgeon of your choice.

Like Compiler for instance,he picked a surgeon that people visit from every corner of the planet. Same with Tehwari and Samadi. A lot of people travel for this operation so I'm sure you'll do fine.

One guy I met from Boulder Colorado came to NYC with his wife and kid and they made a vacation of it while he recovered in the hotel room.

Our numbers are very similar, I'm positive you'll do fine.

jxmuldoon
Regular Member


Date Joined Nov 2009
Total Posts : 43
   Posted 4/10/2011 4:53 PM (GMT -6)   
Did anybody have trouble getting his local urologist to see him after traveling for treatment? I suppose many locals are prima donnas, who do not want to cleanup (even oversee catheter removal) a more famous surgeon's mess.

davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 4/10/2011 4:59 PM (GMT -6)   
my urologist told me that if I went with the surgeon I eventually chose, he wouldn't treat me after the surgery because he wouldn't know what my surgeon did.

I felt terrible after that visit. I almost felt like they were trying to intimidate me. He also told me that my surgeon was just a surgeon and would discard me when done operating on me. That too isn't true. My surgeon actually emailed me this AM to see how I'm doing, on a sunday!

In all fairness though, a colleague of my urologist from same practice told me they would take me back even if I didn't go with them.

needless to say, I currently don't have a urologist, but when i do get one will be looking for a different one than the one that said I couldn't come back if I didn't use them.

It just wasn't fair. I can understand how frustrating it is for a practice to do all the hard work, biopsy etc only to see patients go to bigger names/centers. Most people look at numbers and they're numbers won't grow when people do as I did.

But you know what? we get one shot at the surgery and there are thousands of urologists.

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 4/10/2011 5:35 PM (GMT -6)   
jxmuldoon said...
Did anybody have trouble getting his local urologist to see him after traveling for treatment? I suppose many locals are prima donnas, who do not want to cleanup (even oversee catheter removal) a more famous surgeon's mess.


I'm sure for some it's the prima donna attitude but when you figure the potential liability of having to clean up another surgeon's work it's pretty common and IMO a good practice to be sure the patient is OK before resuming care. After all why should a local be expected to clean up another Dr's mess and open themselves up to owning part of the responsibility?. For example I have a friend who went to Mayo in Phoenix, and had nothing but trouble with strictures, and finally ended up with a Dr 50 miles away and none of the locals will touch him due to liability worries.

My uro said she'd be more than happy to see me after a year if I went elsewhere and I can assure you she's not a prima donna. BTW I wrestled with the decision, did lots of internet searching on the 2 doctors (oddly enough neither had a site promoting them) and decided to have a local, open surgery and am totally happy with it.
Dave in Durango CO

07-06 PSA 2.5
01-08 PSA 5.5 (Dr never told me)
09-09 PSA 6.5
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5
03-01-10 Age 55 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson
03-16-10 Path' G-8 (4+4+5) Bilateral involving 21% of left lobe, 3% of right lobe, SVI, Focal positive margin, pT3b NO MX

All PSA as of 1-25-11 <0.04

mr bill
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Date Joined Sep 2010
Total Posts : 709
   Posted 4/10/2011 5:46 PM (GMT -6)   
We travelled from Erie to Cleveland OH. about a 2 hr drive.  Not sorry for one minute that I did it.  Wife stayed at the hotel on the grounds of the Clinic.  Everything went well. pre-op on Tuesday, surgery on Wedsnesday, discharge on Saturday.   The surgeon I had at Clinic would have justified another 3 hr drive. He is the best, as well as his staff. 
 
I had been going to the Clinic for the past couple of years. Wife had some heavy duty back surgery in July 2009. Went very well. You also have to keep in mind the pre and post op visits.  Had Colonoscopies there.  It is just worth it to go to institutions such as this.  They have a great many patients from the middle east, and it is pretty impressive when you see all the limo's lined up out front, and learn that some Princess has taken over the entire floor in the hotel. And she will be there for a couple of months. The Dr.s' must know what they are doing.
 
Stayed in Erie for RT.  Wish I had gone south for that due to the bad weather. Oh well, you know the old saying about Monday Morning quarterbacks.
 
Another thing to check is if they have a Hope Lodge nearby.  They are sponsored by Cancer Society  and provide free lodging for cancer patients. My understanding is they are very nice.
 
One last thing, keep all your receipts for your tax preparer. Mileage, lodging, meals, out of pocket medical expenses, etc.
 
Oh, my urologist in Erie, told me if I went to Cleveland Clinic for 2nd opinion that I should never come back to him. Much like David.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 4/10/2011 6:44 PM (GMT -6)   
Yes, I had that identical experience. Regarding the concern about cleaning up someone else's mess, give me a breaki.
 
This urologist was just pissed that I wouldn't have him do the surgery. He had me scheduled for a biopsy even before my first visit. He was upset that I went elsewhere (Umich) for the biopsy. I was  just one big $$$ sign to him.
 
Needless to say, I walked out of his office and got another local urologist.
 
Mel

Tigerfan53
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Date Joined Jan 2011
Total Posts : 929
   Posted 4/10/2011 9:48 PM (GMT -6)   

Guys – thanks for the replies.  I had not thought about a cane.  We are getting there on Saturday in time to do some shopping; the surgery is scheduled for Monday morning.  Good idea to keep up with receipts, I’ll be sure to do that.

 

I guess I’m fortunate.  My local uro not only told me I should travel for treatment, but he also said he would be willing to do the follow up work afterwards.  There really isn’t anyone here locally that has enough experience with RRP.  I’m sure I would be more comfortable at home, but like David said, you only get one shot at this – better to go with the experience, since that has so much bearing on the outcome.


Age 53
Diagnosed Dec 2010
PSA 5.3
Biopsy: 50% in 1 of 12 cores, Gleason 6
PSA 5.6
RRP scheduled for 6/6/2011

Mackattack
Regular Member


Date Joined Jan 2011
Total Posts : 78
   Posted 4/10/2011 10:11 PM (GMT -6)   
Tigerfan,
 
I flew from Atlanta to Boston for my open surgery.  I would recommend making the return ticket first class if at all possible.  I flew home 4 days after my surgery.  Sitting upright for long periods of time was still uncomfortable at that point in time.  If I had been riding coach, I think I would have been rather uncomfortable.  You will want to get up and walk several times over the course of the flight. 
 
Also, don't be a hero.  Take the wheelchair.  I had a wheelchair take me to and from the airplane.  I remember thinking to myself that it would have been a loooong way to walk.
 
Overall, I was very nervous prior to the flight and it turned out not to be that big a deal. 
 
My local urologist did refuse to do my postop so you should have this conversation with him beforehand.  I found a new one beforehand and went in for a consultation presurgery.  
 
 
  
PSA 3.9 - October 2010 at annual physical
PSA 4.1 - November 2010 after a month of antibiotic, DRE Normal
Age 41 in December 2010 at Dx of 6 of 12 cores positive T1C and Gleason 3 + 3

open RP on 2/14/11 at Mass General

Post Surgery Pathology Report: Gleason 6, T2, Cancer in 35% of Prostate, All Margins Clear

Tigerfan53
Veteran Member


Date Joined Jan 2011
Total Posts : 929
   Posted 4/11/2011 9:49 PM (GMT -6)   

Mackattack – That’s about the same flight duration, but I’m scheduled to fly home 12 days after surgery.  Since I’ll have 8 more days of recuperation do you think sitting that long will be a problem? And do you think upgrading to 1st class would be worth it?

 

Good idea about the wheelchair; no sense in overdoing it.  Thanks!


Age 53
Diagnosed Dec 2010
PSA 5.3
Biopsy: 50% in 1 of 12 cores, Gleason 6
PSA 5.6
RRP scheduled for 6/6/2011

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 4/12/2011 2:47 AM (GMT -6)   
Tigerfan
I live in Holland
My local hospital didn't do Da Vinci, so I had my Da Vinci in Amsterdam (about 40 miles away)
The deal was that if I was operated on there, then all my post-op care, monitoring etc would be done by them and not locally. They even said that if I had trouble with my catheter in the week after the op that I was not to let anyone else sort it out. I had no problems. (I also had my RT in Amsterdam, and my RT doc consulted with my uro about that which I feel helped)

I haven't had any real difficulty travelling back and forth to Amsterdam, the roads can be very busy, so you can't tell if it will take one hour or three so I usually go by train. I am usually back home within 4 hours of leaving.

I guess that flying is fine for those used to it, but given new security rules and procedures I imagine you may have to be ready to explain the medical need for having extra bulges in your pants if you are using pads.

Alf
Age dx 48
Apr 09 PSA 8.6
DRE neg
Biop 2/12 pos
Gleason 3+3
Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
Nov 09 PSA 0.1
Mar 10 PSA 0.4 sent to RT
13 Apr CT
RT 66Gy ends 11 Jun 10
Tired + weird BMs
Sep 10 PSA <0.1
Jan 11 PSA <0.1
Apr 11 PSA <0.1
Erection OK

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/12/2011 5:29 AM (GMT -6)   
Good hunting and looks like you are mentally ready for it....Tiger Blood....maybe not the Addonis thing, but who knows! Dr. Menon's first LRRP patient in the USA, age like 42 or so back in 2002...was out golfing in a few days...I met and talked to him at Dr. M's office, in his post opt return check up. Of course alittle youthfulness like that might just help that much more, but you are on the young side of this too.
Dx-2002 total urinary blockage from PCa emergency room, bPsa 46.6,
12/12 biopsies all 80-95% vol., Gleasons found 7,8,9's, scans appeared clear, ADT3 prior to Neutron & Photon radiations, DES since 2004-5.

davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 4/12/2011 7:03 AM (GMT -6)   
I'd travel to Amsterdam under any circumstance.

AJ 47 (Maryland)
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 4/12/2011 7:46 AM (GMT -6)   
I travelled from Baltimore to Detroit and stayed at the Henry (old Ritz) for 8 days.  (I respectfully disagree with Mel about the hotel on Ford's campus--for use in August it was one night of misery).  Of course, my wife and I overpacked.  The doctor had a concierge who made sure we had everything we needed (or at least a list) which included:  pads, tape, white vinegar to clean cath line, goo gone to get tape off without skin and hair, bottled water (lots), gift for the wife (for being a sport), and then the go to clothing--sweat pants, shorts for the room, t-shirts and flip flops/Keens, etc.  The supplies are bought locally at the drug store if not handed to you at discharge.  Of course there was the laptop, the cell phone, and the medical supplies they can us like the urine output measurer.  If you are like me, you will up and walking within 24 hours and will be able to tolerate intermmediate walking and sitting.  Good luck with your surgery.  I think you're going to be surprise how well you feel shortly after the surgery.
PSA 1.5 to 3.2 in 11 months. First 12 core biopsy on 2/10 negative in 11, atypical in 1. Second 13 core biopsy on 5/10 at Hopkins positive in 2 with Gleason 3+3 (focal). Robotic "Super VIP" Mani Menon 8/10. Postop G 3+4 (70%/30%). Focal ECE right posteriolateral mid. Neg. margins, lymphs, SV. Post op PSAs 9/14 <.1; 1/11 <.1; 4/11 <.1.

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/12/2011 7:51 AM (GMT -6)   
goo gone! i'd tape that catheter to my thigh 2-3 times a day and by the third day my legs were going numb from all the hair tearing.

Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 4/12/2011 8:02 AM (GMT -6)   

I flew from Tampa to Detroit for rthe surgery.  Flew home 9 days after the surgery as I stayed for the surgeon to remove the catheter.

With the robotic, I could've flown home much earlier without a problem.  I think the recovery time is much shorter than open.  IMO, traveling for this surgery wasn't a big deal, other than it took me away from home for the immediate post surgical recovery period.  And frankly, the recovery was minimal.  If I couldn't see the few incisions I wouldn't have known I'd had major surgery.


AJ 47 (Maryland)
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 4/12/2011 8:11 AM (GMT -6)   
Oh, I forgot one important thing on the list: Ducolax stool softner. An absolute must (clear with doc first but they'll probably prescribe some colace-like substance). It's not the surgery that you'll be most fearful of, it's your first BM! Trust me on this.
PSA 1.5 to 3.2 in 11 months. First 12 core biopsy on 2/10 negative in 11, atypical in 1. Second 13 core biopsy on 5/10 at Hopkins positive in 2 with Gleason 3+3 (focal). Robotic "Super VIP" Mani Menon 8/10. Postop G 3+4 (70%/30%). Focal ECE right posteriolateral mid. Neg. margins, lymphs, SV. Post op PSAs 9/14 <.1; 1/11 <.1; 4/11 <.1.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 4/12/2011 8:18 AM (GMT -6)   
Tigerfan -
Have a look at the top of the forum - there is a thread called "Really Useful List" which a lot of us have contributed to. It has some notes as well on travel that should help you.
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

brainsurgeon
Regular Member


Date Joined Jul 2009
Total Posts : 137
   Posted 4/12/2011 8:59 AM (GMT -6)   
If you ask your local doc to make the referral to where ever you want to go, he should get a summary of what was done, any followups, even an op note copy if he wishes. That way he feels like he is part of the process. All docs may not do this, but most of them will.
72 years old (1939) USA citizen
Prostatic carcinoma dxed June 2009 by PSA (7.0) and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0. RALP July 2009
PSAs 0 since

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/12/2011 9:02 AM (GMT -6)   
My GP whom has been dealing with me for 16 plus years, always gets copies for all my findings/tests from both my urologist and radiation oncologist. He said he needs it so that when he is treating me for whatever, he's seeing the whole picture.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 4/12/2011 10:09 AM (GMT -6)   
AJ:
 
The apartment I stayed at on the Ford Campus had a kitchen, living room, and 2 bedrooms. I'm surprised you didn't like it.
 
Mel

AJ 47 (Maryland)
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 4/12/2011 12:17 PM (GMT -6)   
Mel:

It was August of 2010 and it was soooo hot and the AC wasn't working well at all. My wife was miserable and once we left the hospital we just wanted to get away from that place until cath removal, which, for me, was the most difficult part of the entire surgery. She also wanted to jog daily and it wasn't very safe, although Dearborn wasn't much better. I do think the on-campus housing is a nice arrangement, but it's not optimal (no TV in the bedroom for one!). The Henry has a "comfort and care" arrangement with Henry Ford since so many out-of-towners are there for prostate surgery. They had a special menu, breakfast, lunch, happy hour (yes, booze too) and two premium floors to stay on at a discounted rate. All and all, I agree with one of the prior posters that there was something favorable about being away from home during the most serious post-op phase of the surgery. When I walked into our home in Maryland after nine days away, my parents, kids, and friends were shocked I looked and felt so good. I too was amazed. The plane ride was a breeze (only an hour in coach). I never any pain in my rear end, never needed the "donut" and never leaked any urine after cath removal so my experience may be the abberation. BTW Mel -- my post op pathology wasn't so great either and I read your posts with particular interest.
PSA 1.5 to 3.2 in 11 months. First 12 core biopsy on 2/10 negative in 11, atypical in 1. Second 13 core biopsy on 5/10 at Hopkins positive in 2 with Gleason 3+3 (focal). Robotic "Super VIP" Mani Menon 8/10. Postop G 3+4 (70%/30%). Focal ECE right posteriolateral mid. Neg. margins, lymphs, SV. Post op PSAs 9/14 <.1; 1/11 <.1; 4/11 <.1.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 4/12/2011 4:41 PM (GMT -6)   
A:
 
My surgery was 1/27. It was 10 degrees outside and snowy. The heat worked well, so didn't need A/C.
 
Yes, a TV in the bedroom would have been great and the apartment was not super luxurious, but quite functions.
 
Our cost was $65 per night but they had a $500 grant, so basically it was almost free for us.
 
We never did look into the luxury hotel.
 
Mel
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