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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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2 ReactionsAnyone here have experience with the doctors and facility at Ohio State? I believe it's called the 'James'?
@nvan22 is it ok to ask, when was your whipple by Dr Michael Kendrick?
Sure! It was October 2022
Everything is good! Doing great!
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2 ReactionsI had the similar case with my surgery in April this year. It was performed by Dr, Patrick Starlinger at Mayo in Rochester.
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1 ReactionHello @jnowling and welcome to Mayo Connect. I'm glad to hear that you had your surgery at Mayo Clinic this year. I hope you are doing well.
As this is your first post on Connect, please share as you are comfortable doing so, a little about your journey with pancreatic cancer. I'd be interested in knowing how long ago you were diagnosed and I'm wondering what other treatments you may have had besides the surgery.
I look forward to hearing from you again.
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.
My husband had a virtual second opinion done with Cleveland Clinic. Would not recommend. The oncologist here assumed it was lung cancer. Many, many tests but never ordered a CA19-9. And all tests were "consistent" with lung cancer. Doctor from Cleveland simply agreed with everything the doctor here did... and also did not order a CA19-9.
Chemo and immunotherapy for lung cancer... which of course didn't work. Changed oncologists and the first thing he did was order that blood test and the numbers were over 39,000. Happy with who we have now (plus second opinion at Fred Hutch in Seattle), but treatment was delayed by many months because of those first two doctors. Disappointed by the experience. And I was told afterwards by Cleveland that "the patient had the right to request any tests" which really made me angry. We are not medical people and that is why we went (we thought) to an expert who would order needed tests. I'm over the anger, but want people to know our experience.
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