How did you pick a hospital for pancreatic cancer care?

frygirl,

Please don't take what you hear as a lack of compassion - they are working 15-20 hour days to do what is possible, but know they need to be clear about this disease and each patient's specific circumstances.

Your self advocacy is greatly admired. Compassion and understanding from health care providers is healing in itself. I have found that at MSKCC, compassion seems to be a feature of care. It may have something to do with being an institution devoted to cancer care, but I get positive energy just from going there. It seems to start when you go in the door, all levels of individuals in the center. Regardless of the outcome, I find the compassionate treatment is one of my blessings in life.

That is so good to hear. I have heard wonderful things about MSKCC from people who have had other types of cancer.

I didn't know how it would be for pancreatic cancer.

Cleveland clinic is NOT a pancreatic cancer center. I don’t think they are a comprehensive cancer center either. I was told the two comprehensive cancer centers in Ohio are Case Western and the James at OSU.

Here are links to NCI designated centers of excellence in cancer treatment and PanCan.org Precision Promise Consortium members which have pancreas programs.

MSKCC has a noted pancreas program. Pancreatic oncologist Eileen O’Reilly is one of the top pancreatic oncologists in the USA, is an opinion leader, widely published and world renowned in her field as a clinician scientist who also conducts clinical trials. They also have noted surgical oncologists in Drs. Michael D’Angelica, Jeffrey Drebin, William Janigan. Dr. Alice Wei specializes in robotic surgery for those eligible to have it done this way.

Two other centers in NYC with pancreas centers and member of the PanCan Precision Promise Consortium are Columbia Presbyterian Pancreas Surgeon headed by Dr. John Chabot who has done over 2600 Whipples in his career. Weill Cornell Medicine next door to MSKCC also has a pancreas program with several noted oncologists whose specialty is pancreatic cancer including Dr. Allyson Ocean who is a founding member of the organization LetsWinPC.org

This is great. I am close to NYC. I am hoping my aunt will consider coming here for treatment.

I am seen at MSKCC and am very happy with my care. I am seeing oncologist David Kelsen MD, who has an interest in BRCA related pancreatic cancers. I have the BRCA gene. Dr. Kelsen is a wonderful doctor as well as being an outstanding scientist. I saw Dr. William Jarnigan. I have "borderline resect able" cancer but have responded to chemo and may still be a candidate for surgery. I had a biliary stent placed at MSKCC. My initial was at my local hospital. There was just no comparison. I find that staff are very understanding and respectful. It is difficult to travel, takes me two hours, but it seems well worth it for the excellent care

Thank you. It is so helpful to hear you feel it's worth it.

Hope there's someone out there with some guidance ... I have a really great oncologist at Mayo. the problem is finding a really great oncologist locally (that will also work with the team at Mayo). I'm in the Cleveland, Ohio area and an willing to drive to Pittsburgh or Columbus for port flushes and intermediate checkups (I go to Mayo every 3 months for scans). I'm looking for a FIGHTER ... out of the box thinker, someone not willing to settle with the 'standard of care'. This disease shows no mercy ... I'm looking for someone that will show no mercy in fighting it!

Thanks in advance for any guidance !!

Regarding the original post:

I recommend trying to get all the appointments you want as soon as possible (in parallel) from the best institutions you can. Keep a realistic emphasis on where you will actually be able to travel for treatment, but aim high. You may not be able to get all the ones you want in a reasonable time frame (window in which you actually begin treatment). The more you hear from in a short period of time, the more data you have to make the initial treatment decision, which is important, because you'll be stuck with it for a while. Choosing the first available treatment might actually disqualify you from a better treatment or a clinical trial that becomes available shortly after. Getting those consultations early at least gets you expert opinions. That might be all you get if travel is too difficult, but at least it helps you establish a "standard" for doctors/institutions you like or dislike and credibility of recommendations you might hear elsewhere. Plus, if you change your mind later, you're already an "established patient" in the system of the other institution, and it _might_ make it easier/faster to switch back to them when ready.

INSIGHTS:
- If you are ready for a fight, and your oncologist is not, you have the wrong oncologist.
- If your oncologist won't answer questions or help educate you, you have the wrong oncologist.
- If your oncologist is not compassionate, and you can't interact frequently with a compassionate, communicative PA/RN who works with them, then you have the wrong oncologist.
- Their actions speak louder than their words. Following up on what they say or imply is important!
- Institutions with multiple sites are not the same at every site; they don't always communicate or share, or perform at the same level.
- Institutions that have a "partnership" with one of the big names are definitely not the same as the "big name" institution itself.

Regarding Cleveland Clinic:
My insurer set me up with a "VSO" (Virtual Second Opinion) Zoom meeting with a pancreatic specialist at CC's main branch in Ohio. It was a very informative meeting that pretty much agreed with my other institution's treatment, but brought up some different clinical trial options. I asked if there was any interaction with the Cleveland Clinic facility in South Florida (Weston), but he was not aware of any and didn't know of any trials available there. I was not too surprised, because my image of the CC in FL was mainly for orthopedics and cardiology, but I was surprised later to learn that the Cleveland Clinic in Weston, FL had already been named a pancreatic center of excellence: https://newsroom.clevelandclinic.org/2023/03/09/cleveland-clinic-weston-new-pancreas-center-named-center-of-excellence-for-pancreatic-cancer-and-pancreatitis/

I didn't see in the article who actually conferred upon them this status. But I had looked at CoE's on another site, and was very surprised to NOT see MD Anderson on that page, when they appear near the top of every ranking you can find.

So, I'm not sure if there are actually multiple entities providing this CoE designation or certain institutions self-claiming it. It can be very confusing, so try to confirm whatever you hear from multiple independent sources.