Which hospital of excellence?

With pancreatic cancer being a challenging cancer to treat, it is best to be treated at either an NCI Center of Excellence or a National Pancreas Foundation Comprehensive Cancer Center, having a high-volume pancreas program. This is where you will find GI oncologists who have a sub-specialty in cancers of the pancreas. While all pancrecancer oncologists are GI oncologists, not all GI oncologists are pancreatic cancer specialists. You want the oncologist who concentrates on treating pancreatic cancer patients whereas the average GI oncologist is treating predominately GI tract cancers of the esophagus, stomach, intestine, colorectal and liver. Pancreatic specialists are a tight-knit community and are more likely to be aware of clinical trials specific to cancers of the pancreas.

In Portland, Oregon, OSHU is an NCI designated center of excellence with a high volume pancreas program.
https://www.ohsu.edu/knight-cancer-institute
A Nationa Pancreas Foundation recommended center is Portland Providence Medical Center. It was the first site to run a successful clinical trial on KRAS G12V using engineered T-cell therapy.
https://www.providence.org/locations/or/cancer-institute/programs/hepatobiliary-and-pancreatic-cancer-program
Not as well known for treating pancreatic cancer but a National Pancreas Foundation recommended center is the University of Colorado
https://medschool.cuanschutz.edu/surgery
In Seattle is the NCI Center of Excellence Fred Hutchinson Cancer Center
https://www.cancerconsortium.org/
When I went for additional opinions or another center for treatment, I did not ask for a recommendation from the current oncologist but you certainly could do that. If you decide to change treatment location, they will discuss their policies regarding treatment location and frequency if a different protocol is recommended.

Oregon Health & Science University Brenden-Colson Center for Pancreatic Care
3181 SW Sam Jackson Park Rd Portland, OR

Providence Cancer Institute
4805 NE Glisan Street, Suite 6N60 Portland, OR

Fred Hutchinson/University of Washington/Seattle Children’s Cancer Consortium
Seattle, Washington
Comprehensive Cancer Center

Looks like these 3 facilities are listed amongst the hospitals of excellence for pancreatic cancer. I am from Georgia, so do not have any personal experience. I did however go to Mayo Clinic in Rochester, MN for my surgery. I was able to complete chemo and radiation in Atlanta. I am a little over one year out from surgery, and have been returning to Mayo every 3 months for scans. They expect to release me back to local care for monitoring soon. I did have a very complex surgery, so perhaps this is not the norm. Either way, I would ABSOLUTELY recommend getting a second opinion. The more options and information you have, the better!

I have no experience with any of the facilities that people have mentioned, but I do have experience with medical travel. Years ago, we took our son, whom we adopted internationally, to NYC and Philadelphia for orthopedic care. We flew to NYC; our trips to Philly varied--sometimes driving, sometimes flying (very expensive for us given our location), sometimes flying to a slightly distant airport and renting a car and driving the last 100 miles. What I wanted to mention is that medical travel is very expensive, logistically cumbersome and tiring. Emphasis on the very! So as you consider where to go, take some time to figure out expenses.

You'll need transportation (gasoline or airline tix), food, hotel, incidentals. What will transportation cost? Go online and guesstimate the airfare charges. During some of our son's treatments, we commuted weekly. When we went to NYC, we had to cough up $800 in airline tix weekly, and that didn't count taxis and food. Phllly was worse; I remember one trip costing us $3,000 (round-trip CLT to PHL on a weekday with a short booking time). It was cheaper to fly into BWI and rent a car, although it increased the logistical complexity. Also think about the logistics and fatigue factor. For example, will your husband need a wheelchair? I slung a lot of wheelchairs on our trips, and as I can attest, that complicates things, from finding a taxi to boarding the airplane to getting into restaurants. How long would you need to stay in the distant location, and what would that mean re hotel costs? Is there a low-cost patient residence you can use? (We were able to use Ronald McDonald House a couple of times, but he was a kid, of course.) Finally, check with your tax preparer re deductions. I haven't done medical travel in years, and I am not a tax expert, so don't take this as solid info. Plus the tax code may have changed. Anyway, in our case, we got very little in deductions due to limitations in the tax code. I recall we could deduct only the dollar amount that was above 7.5 percent of our AGI. So that first 7.5 percent was unreimbursed.

I don't mention these concerns to discourage you or tell you no. We bent over backward to get our son the treatment he needed and would do it again, and I know you're in the same situation. But I want to encourage you to plan ahead so you're prepared. Good luck!

My recommendation, based on my experience with my sister, is to relocate to the location that has the best possible care - a place like Mayo or Anderson or Sloan Kettering - and live there during chemo, radiation, Whipple, and any post Whipple care, including additional chemo.

My sister chose to return home after visits to Rochester - my belief is this does not provide the best care - local oncology is not the best, local surgery is not the best.

The advice another pancreatic cancer patient, actually in CA, gave my husband was to go to the largest University Hospital near us. In fact we do live beside Portland, Or and my husband has had evaluation and care from OHSU, Knight's Center. His surgeon was Dr. Sheppard, a world reknowned pancreatic cancer surgeon, at OHSU. Dr. Chen, a g.i. oncologist has been a kingpen in Bruce's treatment. I can understand your decision to get second opinions, we wondered too, but found that within the University GI department specialists to look at every angle of the cancer, fromsuregery, GI oncology and medical pancreas disorders etc. He is 5.5 years survival at this point with no visible CA for the past 2.5 years, but it never means it is gone. This is a journey having a medical team from every angle is very important. Collaboration within the University, Knight's Center and Adventist Health have been a huge support to our journey. But finding a place close to home is good as there are many trips etc, but finding a second opinion can come with other centers like Seattle, Mayo etc. May God be your guide and keeper we have felt His presence in all of t he questions and issues we have experienced.

If it gives you any idea, of time and transportation. I who gave the comments above, have for each year for 5 driven my husband to all of his appts etc and usually it is about 4600 miles total a year. We track for income tax deductions. Remember one has that option with getting to and from for health care. So a trip to another place for a consult may not seem huge for a one time only.

Medical mileage is $0.22/mile (2023 number) so 4600 miles ($1012) plus living expenses does add up! It could exceed 7.5% AGI and be deductible.

Thank you for sharing your very helpful knowledge!

We actually went for a "virtual" second opinion last summer at Cleveland Clinic when they couldn't determine the primary cancer here. That was a waste of time as all they did was agree with the doctor here... who had not even requested a CA19-9 because he didn't think this acted like pancreatic cancer. Second opinion didn't ask for that test either. We switched oncologists after they treated Dan with chemo and immunotherapy for lung cancer... which did nothing except made him wait months more for a proper diagnosis. CA19-9 numbers were over 39000 ... and even to someone like us with no medical knowledge... that pointed at the pancreas as a primary.

Thank you abbylouise for your firsthand knowledge! Portland is one possibility for us.
And yes, the milage does add up for us. I have the records, but am just guessing we've put over 10,000 miles into Dr visits to our closest oncologist/scans/chemo/radiation this past year.

Thank you ncteacher. I'll admit the financial part is in the back of my mind. We have always lived within our means, and we do just fine on a retirement and social security. But, we definitely are not accustomed to multiple trips requiring transportation, motels, etc, etc. Thank you for the reminder on this.