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Distant Treatment Worth the Trip?

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Posted 3/30/2015 3:10 AM (GMT 0)
Greetings to all. I'm considering first line treatment options and one choice would have me traveling 9 hours away for a two week stay to receive radiation via Cyberknife.

I am wondering what others that ventured away from the comforts of home thought about their decision. I'm thinking not only of the initial treatment, but also of difficulties in possible follow up, or with more acute complications. I've got a good local urologist, but getting back to the original provider would take some work...

Thanks for your comments.

Mac
Posted 3/30/2015 3:20 AM (GMT 0)
I travelled about 2500 miles stayed 5 weeks for my treatment. if you got the time, money and will. Why not?
Posted 3/30/2015 3:25 AM (GMT 0)
MC, I think you could get the treatment and arrange for follow,up,with your local URO, assuming you trust him/her.

Is there no highly competent center offering SBRT any closer to you?
Posted 3/30/2015 3:34 AM (GMT 0)
Unfortunately, I'm not very comfortable with the CK guys close to home. Wish that was different.

There are definitely some good providers maybe 4-5 hours away. But I'm thinking that if I'm traveling that far I should go to the guy I think is the "best" - who is 9 hrs away...
Posted 3/30/2015 4:15 AM (GMT 0)
Mac -- Go get the best. There are no do-overs.

I traveled 1100 miles for treatment. Stayed about 2 weeks.
I don't regret my decision at all.
Talk with your local uro ahead of time and make sure he's ok with doing some possible follow ups (if needed). But realize, that the doc doing the treatment will want to see you for some follow up appointments anyway, so plan for that.

Best of Luck -- Tigerfan
Posted 3/30/2015 1:47 PM (GMT 0)
I had a 4.5 hour drive and stayed at a hotel on MD Anderson's campus for almost two weeks post-surgery. Like others, haven't regretted the decision for a microsecond. Go where you will get the best possible care regardless of travel.
Posted 3/30/2015 1:50 PM (GMT 0)
Don't give it a second thought... Go for the best.
Posted 3/30/2015 2:35 PM (GMT 0)
The mantra of late out here is "Go big or go home" - I personally cannot understand why anyone would not want to be treated by "the best" irrespective of geographic location, which is why I made the decision early on in my journey that I would indeed be treated by the best, no matter where that took me.

My thoughts - what is your life, your quality of life, "worth?"
Posted 3/30/2015 2:58 PM (GMT 0)
Yoop, unfortunately some of us can't afford to be treated by the best. We're all dealt different hands in life.

Cheers, Doug
Posted 3/30/2015 3:03 PM (GMT 0)
Hey Doug - I hear you. While not independently wealthy I really, truly wasn't concerned about the cost and would not allow that to weigh in on my decision. My feeling was, and is, that if I ended up with a significant debt after insurance from this process then I would simply pay what my monthly budget would allow and leave it at that. When I compare the "financial" cost versus the "health" cost, well, there is no comparison. (Again, agreed, one man's opinion and we are all certainly entitled to our own take!)
Posted 3/30/2015 3:44 PM (GMT 0)
I traveled cross country, 2465 miles from rural Florida to UCLA to have the first cousin of Cyberknife, SBRT, and no regrets. Mileage is not that pertinent since I went by plane.

There are some foundations that will pay say $5,000 to help offset your travel and living expenses and would have paid any portion not covered by Medicare and AARP Medicare Supplement Plan F.

Check out Patient Access Network and ZERO (www.PANfoundation.org) 1-888-316-PANF who paid $5,000 with two $2500 grants to offset some of my Provenge travel expenses and also pays for my Zytiga.

There is another foundation with a similar name PatientAdvocate.org who considers grants by phone on first Monday of every month. They paid another $1,000 worth of travel expenses.

Yes, well worth the travel.

LupronJim
Posted 3/30/2015 5:36 PM (GMT 0)
The MO guy I see is Dr. Lam.

I am in mid-Michigan and he is over 2000 miles away in Marina del Rey, ca.

I see him about once (sometimes twice) a year.

I am comfortable with him. If I wasn't, I would see Scholz or Turner (same office).

If you can afford it, why not.

For us, we also get to see our daughter (she lives in Santa Monica, about 10 minutes away).

That's a major bonus, but I would still go there and even try and make a vacation out of it (Vegas, baby!)

Mel
Posted 3/30/2015 5:56 PM (GMT 0)
Hi Mac,

Unlike some other therapies (e.g., surgery, LDR brachy) I don't think the learning curve is quite as steep for SBRT. An RO who has done a 100 should be adequate. You might want to ask for recommendations on the CyberKnife website. The closest big name that comes to mind would be Sean Collins at Georgetown U in DC, but that is still a trek from NC.

Fiducial placement can be done locally. Perhaps the MRI and CT planning scans can be as well. If you want at least a day between treatments, I guess 10 days is the shortest plan.

As for follow-up, I saw my RO for a couple, but I realized the in-person visit was unnecessary. There was nothing he did for me (e.g., scrips for alpha-blockers) that could not have been done over the phone or by a local Uro. I get my PSAs done at another office and have the data sent to my RO. He also mails me an EPIC survey periodically, which I fill out and mail back. I never see him anymore for myself (I've visited with men in my support groups).
Posted 3/30/2015 9:24 PM (GMT 0)
Mac, get the best treatment you can afford and at the location that offers it from a competent practioner. You won't regret it.

Don
Posted 3/30/2015 9:28 PM (GMT 0)
Forgot to mention there is a Cyberknife unit in Savannah, GA. I am not sure they are using it for PCa. Call Lewis Cancer Center and I think they can tell you since they are allied with the hospital that has the unit. May be a bit closer than where you are going than nine hours.

Don
Posted 3/30/2015 9:52 PM (GMT 0)
There is a balance point that we all have to find. I know I've used the "go big of go home" adage for this. In my experience this meant being willing to leave this small town of 12000 people, and the 40 bed hospital that is here, and go to a "top 10" cancer and medical center. I was fortunate that there is one 2 hrs drive away. In fact, there is apparently another great RALP surgeon in Indianapolis, IN--2 hours the other way. I could have gone 4 hours to either Chicago or Nashville and Vanderbilt.

Would I have gone for JH, Mayo, or UCLA? I don't know. That choice never moved beyond the "I COULD do that".
Posted 3/31/2015 1:25 AM (GMT 0)
I traveled weekly to Bloomington, Indiana from my home in Ky (153 miles) for 9 weeks for proton beam therapy. I stayed at "Jill's House" which was a facility established specifically for proton patients. Went home on weekends. I had already retired, so no work issues. Overall, it was a great experience well worth the trouble of the weekly drive back and forth.
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