1. < Pancreatic Cancer

How did you pick a hospital for pancreatic cancer care?

Posted by jenray @jenray, Apr 9, 2023

Hi-I just found out that my aunt has a high probability of having pancreatic cancer. They detected a cyst in her pancreas while screening for something else about 6 months ago. In a follow-up screening, they now think they see a mass that is affecting her gall bladder. She has elevated levels of CEA (6.2) and CA 19-9 (around 1532). She will be having a EUS this next week.

And while further investigation could change everything, right now it looks like the mass has not spread to the arteries or veins or nearby organs (I may not be saying this right, I'm new to this), so she could be a candidate for surgery.

So if we get the worst news (and even if we don't) we would like her to go to a hospital that specialized in pancreatic care. So I guess my question here is how hard is it to get a placement right now? We are looking at Mayo in Arizona, Cleveland Clinic, MD Anderson, and a few others. But I have heard that MD Anderson has a wait of about a month, which seems too long to me.

Should we be signing her up for every major we can find in the hopes of getting her the soonest appointment? What strategies did people use? Am I overthinking all of this?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

montyd | @montyd | Nov 23 9:22am
In reply to @frygirl777 "Finding a pancreatic oncologist is key! I’m in the California desert & had gone to Loma..." + (show)
@frygirl777

Finding a pancreatic oncologist is key! I’m in the California desert & had gone to Loma Linda Hospital in January for my surgery (distal pancreatectomy with splenectomy) and then radiation was done in mid March. I was to start chemo this week but am not feeling comfortable with the total lack of compassion from my cancer team. I am stage 1B and the oncologist gave me little to no hope, stating that pancreatic cancer regardless of the stage always spreads elsewhere within 2-3 years. Who does this to a person who is grief stricken and in need of some hopeful words??? What I’m saying is please don’t waste time with places or people who consider you a number or dollar value instead of a human being. Choose somewhere where you can go to the ER if you need to, for help and not be made to wait 10-12 hrs in a waiting room full of sick people because you will need to go to ER at least a few times during your cancer treatment guaranteed.

Choose a compassionate oncologist! I am hoping that even exists. I have seen three already & none were compassionate at all. Choosing the right team is EVERYTHING!!! I am getting a referral to a different cancer center this week so I can get going on the chemo asap. I’m ready to beat this! Please wish me luck everyone & send good vibes, prayers…whatever positive energy you can because I sure need it at this point.

I hope you find an amazing place!!!! Positive thoughts for you both!

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Your oncologist was wrong. Pancreatic cancer doesn’t always spread in 2 to 3 years especially if it’s caught very early and removed. That must be an oncologist with limited experience with pancreatic cancer. Please go to a pancreatic center of excellence. You will get much better service from more qualified medical professionals.

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mayoconnectuser1 | @mayoconnectuser1 | Nov 23 6:36pm
In reply to @whipple2232 "The James Comprehensive Cancer Center in Columbus, OH is an excellent cancer hospital. I had Whipple..." + (show)
@whipple2232

The James Comprehensive Cancer Center in Columbus, OH is an excellent cancer hospital. I had Whipple surgery there in Oct 2023 to remove a tumor in my duodenum. My surgeon was Dr. Mary Dillhoff. She is very experienced in performing the Whipple procedure.

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I can't find James on the NPF Pancreatic CoE list.

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1 reply
whipple2232 | @whipple2232 | Nov 23 7:25pm
In reply to @mayoconnectuser1 "I can't find James on the NPF Pancreatic CoE list." + (show)
@mayoconnectuser1

I can't find James on the NPF Pancreatic CoE list.

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Try googling The Ohio State University Wexner Medical Center. This includes The James Comprehensive Cancer Center. It’s an NPF from what I can see.

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1 reply
mayoconnectuser1 | @mayoconnectuser1 | Nov 23 10:03pm
In reply to @whipple2232 "Try googling The Ohio State University Wexner Medical Center. This includes The James Comprehensive Cancer Center...." + (show)
@whipple2232

Try googling The Ohio State University Wexner Medical Center. This includes The James Comprehensive Cancer Center. It’s an NPF from what I can see.

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Ah, ok, didn't see James.

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2 replies
whipple2232 | @whipple2232 | Nov 24 9:39am
In reply to @mayoconnectuser1 "Ah, ok, didn't see James." + (show)
@mayoconnectuser1

Ah, ok, didn't see James.

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The James is part of the OSU hospital.

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gamaryanne | @gamaryanne | Nov 24 6:10pm
In reply to @mayoconnectuser1 "Ah, ok, didn't see James." + (show)
@mayoconnectuser1

Ah, ok, didn't see James.

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Where do you live?

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1 reply
mayoconnectuser1 | @mayoconnectuser1 | Nov 24 6:36pm
In reply to @gamaryanne "Where do you live?" + (show)
@gamaryanne

Where do you live?

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I live in Florida.

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1 reply
gamaryanne | @gamaryanne | Nov 25 8:13am
In reply to @mayoconnectuser1 "I live in Florida." + (show)
@mayoconnectuser1

I live in Florida.

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@mayoconnectuser1
If you are in Florida you really should visit or contact Atlanta Liver and Pancreas. Pancreas Center of Excellence. Dr Abdalla and Dr Sur alongside oncologists. Interventional radiologists, and their own dietician(very important for this disease) Associated with Northside hospital. Very experienced with DaVinci system which will ease recovery when it can be used.

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1 reply
mayoconnectuser1 | @mayoconnectuser1 | Nov 25 8:44am
In reply to @gamaryanne "@mayoconnectuser1 If you are in Florida you really should visit or contact Atlanta Liver and Pancreas...." + (show)
@gamaryanne

@mayoconnectuser1
If you are in Florida you really should visit or contact Atlanta Liver and Pancreas. Pancreas Center of Excellence. Dr Abdalla and Dr Sur alongside oncologists. Interventional radiologists, and their own dietician(very important for this disease) Associated with Northside hospital. Very experienced with DaVinci system which will ease recovery when it can be used.

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Thank you.

The reason I monitor and comment relates to my experiences with my sister (https://connect.mayoclinic.org/discussion/my-sisters-battle-with-pdac/).

Hoping to impart one key action - to immediately consult with a CofE, and if possible, even if difficult, relocate to the area of that team of experts - for chemo and surgical care. Local care is not sufficient, even local oncology, in my opinion.

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1 reply
marienewland | @mnewland99 | Nov 25 9:43am
In reply to @mayoconnectuser1 "Thank you. The reason I monitor and comment relates to my experiences with my sister (https://connect.mayoclinic.org/discussion/my-sisters-battle-with-pdac/)...." + (show)
@mayoconnectuser1

Thank you.

The reason I monitor and comment relates to my experiences with my sister (https://connect.mayoclinic.org/discussion/my-sisters-battle-with-pdac/).

Hoping to impart one key action - to immediately consult with a CofE, and if possible, even if difficult, relocate to the area of that team of experts - for chemo and surgical care. Local care is not sufficient, even local oncology, in my opinion.

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@mayoconnectuser1
Thank you for sharing the story of your sister who passed. It’s very difficult to see a loved one pass with such suffering.
Thank you for the care you gave your sister.

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