New diagnosis of early and small pancreatic cancer, Whipple at Mayo?

Posted by hope222222 @hope222222, Feb 18, 2022

My husband has been diagnosed with primary localized pancreatic cancer in the head of the pancreas without vascular involvement. He is otherwise healthy , 57 yeard old, and a candidate for the whipple procedure according to our oncologist in Park Ridge, Illinois. I am interested in your experiences both with the initial consult with Mayo as well as any whipple experience you may have in preparing us. Thank you so much

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

@hope222222, welcome to Mayo Clinic Connect. I can imagine that you and your husband have a lot of questions. I'm tagging a few fellow pancreatic cancer members like @dakotarunner @marvinjsturing @susan2018 @drewgrebe @kjrita @marilyn2525 @caryns @beachdog @bb21 @artgirl2 @ellengalloup @vherzog777. Some have consulted at Mayo Clinic either in MN, FL or AZ.

You might also be interested in seeing more shared stories in these discussions:
- Need advice: Stage 2 pancreatic cancer https://connect.mayoclinic.org/discussion/need-advice-2/
- Pancreatic Cancer Group: Introduce yourself and connect with others https://connect.mayoclinic.org/discussion/pancreatic-cancer-group-introduce-yourself-and-connect-with-others/

Hope, do you already have a first consult set up at Mayo Clinic? How are you holding up with this news?

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I was very pleased with my initial consult and Whipple procedure at Mayo. I had been there back in 2004 for prostate cancer and surgery, and it was great, and again in 2019 for pancreatic cancer. I was sicker than a dog when I got there, and had spent the previous month in another hospital while they tried to figure out what was wrong. It was a tough diagnosis at Mayo as the tumor was on the outside of my pancreas, and thus not visible when they scoped me. All symptoms pointed to Pancreatic cancer, and Whipple was recommended by Dr. Truty. They are the pros, and I had no doubt at any time that I was in good hands. The hospital staff is geared to great patient care before and after surgery, sand I was truly grateful to them. As far as I am concerned, Mayo is my go to spot for major medical care.

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Just an addition on my first comment. If your husband does have the Whipple, warn him to be sure to not overdo it on the food intake after surgery. I had been on IV's and a feeding tube for over a month before surgery, and I foolishly ate too much too soon,m and paid a sad priced for it. Now I am 3+ears out, and feel great. God's blessings to you and your husband on your journey.

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It will soon be 8 years since my diagnosis by my local doctor. He immediately made appointments for me at Mayo in Rochester. I was very impressed with my initial consult. I had my first scheduled appointment in the morning for tests. My second appointment was scheduled for later in the day, so my wife and I walked back to our motel. Just as we walked into our room, the phone rang. The surgeon was available for a consult, so we walked back to talk with him. From the time of diagnosis to surgery was less than a month. The care I received after surgery was phenomenal. When I go back for scans and check ups, I am always amazed that I can get my scans in the morning and will have the results by mid afternoon. I do not hesitate recommending Mayo for treatment of pancreatic cancer.

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@colleenyoung

@hope222222, welcome to Mayo Clinic Connect. I can imagine that you and your husband have a lot of questions. I'm tagging a few fellow pancreatic cancer members like @dakotarunner @marvinjsturing @susan2018 @drewgrebe @kjrita @marilyn2525 @caryns @beachdog @bb21 @artgirl2 @ellengalloup @vherzog777. Some have consulted at Mayo Clinic either in MN, FL or AZ.

You might also be interested in seeing more shared stories in these discussions:
- Need advice: Stage 2 pancreatic cancer https://connect.mayoclinic.org/discussion/need-advice-2/
- Pancreatic Cancer Group: Introduce yourself and connect with others https://connect.mayoclinic.org/discussion/pancreatic-cancer-group-introduce-yourself-and-connect-with-others/

Hope, do you already have a first consult set up at Mayo Clinic? How are you holding up with this news?

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Thank you so much Colleen. Can’t tell you how helpful this is. Working on getting answers from my insurance on coverage. We live near Chicago and have a Blue Cross Blue Shield PPO.

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I am at Duke Cancer Center in Durham NC and very satisfied with my terrific medical team, but I have also heard very good things about Mayo Clinic and rely on publications from their research. i would definitely go for a consult and if recommended do the Whipple. Pancreatic cancer can be aggressive and the sooner you deal with the better. I recommend that you agree to genetic testing of your tumor as it helps decide your best treatment after surgery and where you fall in the genetic grouping. I unfortunately have a rare type found in 1-2% but knowing helps us look for clinical trials and other treatments that might be available. The best to you and your husband. Let us know how your visits go.

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You need to see the location and no vascular interference as good news. The Mayo is a could choice for whipple but regardless, make sure you have it done somewhere that does a lot of whipple. No general surgeons for this procedure
Mayo, Sloan Kettering, MD Anderson.
Good luck

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@bb21

I am at Duke Cancer Center in Durham NC and very satisfied with my terrific medical team, but I have also heard very good things about Mayo Clinic and rely on publications from their research. i would definitely go for a consult and if recommended do the Whipple. Pancreatic cancer can be aggressive and the sooner you deal with the better. I recommend that you agree to genetic testing of your tumor as it helps decide your best treatment after surgery and where you fall in the genetic grouping. I unfortunately have a rare type found in 1-2% but knowing helps us look for clinical trials and other treatments that might be available. The best to you and your husband. Let us know how your visits go.

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I have 2 cysts on pancreas .9 cm. I am worried about this. My GI doctor I will have another MRI in December. What are your thoughts?

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@rexsan20

I have 2 cysts on pancreas .9 cm. I am worried about this. My GI doctor I will have another MRI in December. What are your thoughts?

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Of course, I am not a doctor, but I had been followed every 3 months and had no symptoms other than Pancreatitis a year prior and a resident visiting my Primary doctor wanted to check my Lipase which increases with pancreatitis. It was some higher than it was when I left the hospital. they referred me Duke GI who did an upper endoscopy...clear. Then MRI or CTs every quarter. Clean until September 2020 when my GI doctor just thought something was blocking my bile duct and decided to do another Upper Endoscopy the nest quarter. They did a CA19-9 and it came back at 100 (norm is 0-40). I wish I had pushed them to do it ASAP. It would have had me in treatment 3 months earlier and surgery earlier and it could have made all the difference in one node of 20 being positive even though no evidence of involvement outside of head of pancreas. So if you ask me and since you are worried, I would ask them to do it earlier...say around June/July. Talk to a GI specialist for opinion. You be your own advocate.

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