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How did you pick a hospital for pancreatic cancer care?
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?
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NeverGiveUp,
Please consider moving to Mayo Rochester area for all treatment. They are far better at oncology and assessment testing than your local facility. It could make a difference.
My sister lives in the Detroit area and went to Cleveland Clinic for a second opinion about treatment for esophageal cancer. She didn't find her team at the University of Michigan was very communicative. She was assigned a second year fellow at the fellows oncology clinic. The closest place for a good second opinion was Cleveland Clinic, 3 hours away. I have been seen at MSKCC in NY for my pancreatic cancer. It's really important to establish as a patient in a tertiary setting so you will be in the "line up". I had my Whipple surgery at MSKCC. So far, my local oncologist and oncologist at MSKCC, David Kelsen, have been in agreement. It can be difficult to travel when not feeling well so I think it is important to be realistic about what you can handle in terms of traveling.
I believe that the National Pancreatic Foundation does the accreditation.
This link is to the NPF and describes the accreditation process and there is a listing of the centers under this link
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
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2 ReactionsI went immediately to Mayo Rochester. Talked to dr Kendrick did my chemo in my home town. Got an other opinion from U of Michigan they said they couldn’t help me. Long story short Dr Kendrick performed the Whipple 9 months ago I am doing well. I did 8 rounds fulfironox and 3 weeks of the higher intensity radiation. 6 weeks later had surgery and the tumor was dead. I would go to Mayo for the radiation. Dr Jethwa the radiation oncologist is great also. I woukd not trust anyone else to do the radiation.
I am working on my new digestion and doing well. Best of luck to you all!
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1 ReactionAnyone here have experience with the doctors and facility at Ohio State? I believe it's called the 'James'?