Confused by CT scan result: How can I get it explained?

Can you please clarify-is there a listing of “pancreatic centers of excellence” somewhere? Or are you referring to the 11 cancer centers recognized in multiple texts?? As you know, every place touts themselves as experts. Thankyou!

The National Pancreatic Foundation has an accreditation for pancreatic centers of excellence. There are 150 listed. This is from their website:
What Are National Pancreas Foundation Centers Of Excellence?
National Pancreas Foundation Centers of Excellence are at premier healthcare facilities that focus on multidisciplinary treatment of pancreas disease, treating the “whole patient” with a focus on the best possible outcomes and improved quality of life. The program’s catalyst emerged from the patients’ need to find specialists in the field of pancreas disease. “We receive calls and emails every week from patients who need to find a physician that specializes in pancreatitis or pancreatic cancer,” said Jane Holt, co-founder. “Not only do we guide them to a specialist that can help with diagnosis, but NPF Centers of Excellence can help with pain management, nutrition information, surgery, and psychosocial support. Our objective is to have the best patient outcomes, which means treating the ‘whole patient.”

“We are thrilled to expand our NPF Centers of Excellence Program to better serve the needs of patients suffering from pancreas disease,” said CEO David Bakelman. “The NPF Centers of Excellence Program is one of the pillars of NPF, and we are looking forward to working with our current and new Centers.”

There are currently over 150 NPF Centers of Excellence throughout the nation.

There are inconsistencies in the level of care they receive for people coping with pancreatitis and pancreatic cancer. The NPF Centers designation will help facilitate the development of high-quality, multidisciplinary care approaches for the field. Designated centers will also seek to advance research and lead the way for heightened awareness and understanding of pancreatitis and related conditions among community physicians, allied health professionals, patients, families, and the general public.

Approved NPF Centers underwent an extensive auditing process and met the criteria developed by a task force composed of subject matter experts and patient advocates. The criteria include required expert physician specialties such as gastroenterologists, pancreas surgeons, and interventional radiologists, along with more patient-focused programs such as a pain management service, psychosocial support, and more.
https://pancreasfoundation.org
Pancreatic Cancer Action Network offers direct advice to patients seeking care.
https://pancan.org
https://pancan.org/facing-pancreatic-cancer/patient-services/contact-us/

Thank you for this. I did not know it existed. I will post on my social media I am launching a purple stride team for the Atlanta walk so using social media to publicize and hopefully raise funds for research, working with PANCAN
Our team is the Winchester P-52s.

Thank you for your service and activism.

No offense, but not everyone has a medical background to review results/treatments and discuss/argue with doctors providing their treatment. Nor do they have easy access to pancreatic cancer centers. The closest one to me is 5 hours away and fortunately I have the funds to make occasional trips. I do not know if I have funds to actually complete treatments if they differ from what is recommended locally. I always reach out to the Pancreatic cancer centers to ask for second opinions before changing treatments or asking for additional treatments. After much research, I found out that the hospitals listed as "high volume centers" with PanCan are NOT necessarily pancreatic cancer centers nor are they comprehensive cancer centers. PanCan can not give more info than the "large volume" sites which to them is 20+ surgeries per year. I was initially seen at Cleveland Clinic and was very disappointed in their attitude and lack of explanations-other than "get your life in order". Felt I was passed off to local oncologists to receive what is considered "standard treatment". I have had research everything on my own and send questions to my local oncologist, then send questions to the nearest Pancreatic Cancer Centers where I went for a second opinion early on. I agree with you that we need to advocate for ourselves, but I wish I felt like at least one of my doctors was fighting for me at least half as hard as I have to!

Wishing you all the best in continuing your advocacy for yourself. I am hoping that my local oncologist, who I like very much, will be responsive to the advice of my team at MSKCC. Even though they are within 2 hours ground transportation away, it would be difficult to transfer care. I am hoping that my doctor will follow the lead of world class experts. I am glad you second opinion team continues to be responsive to your questions.

my second opinion team has to be hounded a bit to respond.... 🙁

It is useful to actually see your second opinion periodically, perhaps you can at least get a virtual visit in. That should be helpful in keeping them engaged in your care. If you are not seen in someway, they are out of touch with you and I think will not be as able to really handle your requests. I feel I get more from an in person visit but I am reasonably close to MSKCC and will try and go in person as much as possible.

Oh my gosh, I just happened to come across what you wrote above. This is exactly what I’m always trying to explain. I’m a 62 yr old female who has an oncologist 2hrs away. Everyone keeps saying you have to advocate for yourself! I have no idea what I’m looking for, I’ve only seen the oncologist on my 1st visit. It seems every time I get chemo something bad happens. Allergic to that F drug and sent to ER. Blood clot and embolism to lung next treatment, etc. I’m going for my 3rd gem/abraxine rx Monday.
I don’t understand centers for excellence. Went to John’s Hopkins when I was 1st diagnosed in March but they said I’d have to move to the area and someone would have to move there too to get me to appts, chemo, etc because I’d be too sick and needed someone there. Who’s going to quit their job to do that? So I just gave up and came back home. I feel like I’ve signed my death warrant because I don’t understand all this. Can’t drive anymore because of all the meds. How does everyone get to work? I’m so depressed and constantly having panic attacks I just stay inside my 4 walls and in bed most of the time. If you don’t believe in whatever the centers for excellence are, how would you go about trying to find somewhere that cares if you live or die? What do you do if you’re older and all alone like I am? I just can’t understand how you go on living even halfway normal lives. I’m sorry for going on and on but when I read what you wrote I thought maybe this person can explain.

It must be very difficult to live far away from the clinic where your oncologist is located. None of us understands the numbers in those reports. I make a copy of the cat scan report and then google each test and word with the size of the tumor. That has helped us. Also please do virtual visits with your oncologist. He needs to understand your predicament of living 2 hours away. Maybe you can go in for a face to face once month. We are all in this together
Sincerely Susan