Traveling for Treatment – Advice

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

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.

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.

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.

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.

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 1^st class would be worth it?

 

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

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.

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.

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.

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.

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

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.