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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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Hello @jenray and welcome to the Pancreatic Cancer discussion on Mayo Clinic Connect. I so appreciate you advocating for you aunt. This must be difficult for her and to have caring family looking out for her must give her comfort.
I see that you want to find a hospital that specializes in this type of cancer. The medical institutions that you have mentioned are all good ones. I understand the wait time is hard to envision if her diagnosis is pancreatic cancer. I would recommend that you find an oncologist who specializes in pancreatic cancer. Here is a link to the National Pancreatic Cancer Foundation website, https://www.npcf.us/support/. Listed here is a Helpline phone number. Next week, you might consider calling and see if they have a referral to a pancreatic cancer specialist in your area.
You mentioned that your aunt will be having a EUS next week. I'm wondering if her doctors have done a pancreas blood work that would show pancreas function? I look forward to hearing from you again. Will you let me know about the results of the EUS and if you have made any decisison on follow-up treatment?
Thank you! I will let you know what we find out. Just skimming through these boards has already been so helpful.
She is currently seeing an oncologist, but not one who is a pancreatic specialist. The area she lives in is fairly rural. She would have to go about 5 hours to get to a major hospital, 3 hours to get to a major airport, so we are definitely going to need to have her travel.
And I will look at her bloodwork again to see if there is anything about pancreatic function. There is so much to learn.
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1 ReactionFinding 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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7 ReactionsI'm sorry that I don't have information to address your question, but I think that YOU deserve major, big "KUDOS to you" for helping your aunt! Good for you!
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1 ReactionI can say from experience that MD Anderson and Cleveland Clinic looked at my stage 4 case and said ‘Palliative care’. Mayo Rochester it the only place that gave me hope … and after 2 HIPEC procedures and a surgery i feel like I have a future!
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4 ReactionsThis is so helpful, truly. And I wish you all the luck. I hope you find your dream team.
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1 ReactionThank you! This is really good information. I'm not sure it would have occurred to me to keep looking after getting into one of the big programs.
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1 ReactionResearching everything like crazy is what I do in a crisis. She's a good person, and this is a scary time.
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1 ReactionFry, there just are not a lot of compassionate people. And, a lot seem to be doctors. I am fortunate to have the care team that I do at mayo Phoenix. You are right fry, they do make a huge difference. I can honestly say that I trust them with my life cause I am.
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1 ReactionOh I’m about to. I can feel it coming! Thank you! I hope your aunt gets the team & treatment she deserves also. 💜
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