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Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

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

toesz | @toesz | 2 days ago

Hello All,
I've recently been advised that I have a 5cm mass in my pancreas tail, diagnosed as Adenocarcinoma, high-grade. The surgeon highly suggested a second opinion as to whether surgery was even an option, (given my overall health). Problem is, I really don't know where to turn to find a second opinion that checks the boxes for me, namely insurance, Medicare and Part A and Medigap, location, SW Wisconsin. Any trustworthy websites folks can recommend that I can use to filter for a pancreatic specialist and second opinion. thanks for any insight....Toesz

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1 reply
jeeplewis | @jeeplewis | 1 day ago

I’m sorry to hear of the diagnosis & wish you the best. Mayo Clinic in Rochester, MN is the first place that comes to mind for a second opinion.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago
In reply to @toesz "Hello All, I've recently been advised that I have a 5cm mass in my pancreas tail,..." + (show)
@toesz

Hello All,
I've recently been advised that I have a 5cm mass in my pancreas tail, diagnosed as Adenocarcinoma, high-grade. The surgeon highly suggested a second opinion as to whether surgery was even an option, (given my overall health). Problem is, I really don't know where to turn to find a second opinion that checks the boxes for me, namely insurance, Medicare and Part A and Medigap, location, SW Wisconsin. Any trustworthy websites folks can recommend that I can use to filter for a pancreatic specialist and second opinion. thanks for any insight....Toesz

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Hello @toesz and welcome to Mayo Connect. You are wise to be looking for a trustworthy place to go for a second opinion. As @jeeplewis mentioned in his post, Mayo Clinic would be a good place for a second opinion. Here is a link for information on obtaining an appointment at Mayo Clinic, http://mayocl.in/1mtmR63.

If for any reason, you cannot be seen at Mayo Clinic, I would suggest being seen at a Pancreatic Center of Excellence. Here is a website that will provide you with information about the location of these Centers, https://pancan.org/facing-pancreatic-cancer/patient-services/contact-us/

I wish you well as you seek more information and a second opinion. Will you continue to post as you continue this process?

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gamaryanne | @gamaryanne | 1 day ago

I might also recommend an opinion from Dr Doug Evans in Milwaukee. He is widely known in this field and may do a virtual second opinion.

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1 reply
toesz | @toesz | 1 day ago
In reply to @gamaryanne "I might also recommend an opinion from Dr Doug Evans in Milwaukee. He is widely known..." + (show)
@gamaryanne

I might also recommend an opinion from Dr Doug Evans in Milwaukee. He is widely known in this field and may do a virtual second opinion.

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Thanks for the kind sentiments and informative replies. I reviewed the Center of Excellence and the first choice was the Mayo Clinic in Rochester, only about 90 miles from me! I've contacted Mayo and have a phone consult with them on Monday, the 16th.
Thanks again, Toesz

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago
In reply to @toesz "Thanks for the kind sentiments and informative replies. I reviewed the Center of Excellence and the..." + (show)
@toesz

Thanks for the kind sentiments and informative replies. I reviewed the Center of Excellence and the first choice was the Mayo Clinic in Rochester, only about 90 miles from me! I've contacted Mayo and have a phone consult with them on Monday, the 16th.
Thanks again, Toesz

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That's wonderful, @toesz. I'm glad that you have an appointment on the 16th. I'm sure you will get some helpful information and guidance at Mayo Clinic.

Will you post again and let me know you are doing?

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1 reply
toesz | @toesz | 23 hours ago
In reply to @hopeful33250 "That's wonderful, @toesz. I'm glad that you have an appointment on the 16th. I'm sure you..." + (show)
@hopeful33250

That's wonderful, @toesz. I'm glad that you have an appointment on the 16th. I'm sure you will get some helpful information and guidance at Mayo Clinic.

Will you post again and let me know you are doing?

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Absolutely!

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Moderator
Colleen Young, Connect Director | @colleenyoung | 12 hours ago
In reply to @wiredallwrong "Hello everyone. My name is Jerold. I was diagnosed with Acinar cell carcinoma stage 4 incurable..." + (show)
@wiredallwrong

Hello everyone. My name is Jerold. I was diagnosed with Acinar cell carcinoma stage 4 incurable pancreatic cancer in 2022. I was on chemo every other week along with a pump that stayed connected for 2 days. I responded well to the chemo and after 2 years my surgeon suggested we go forward with the whipple procedure. That was performed late July and took nearly 11 hours. I am finally feeling like I’m breaking free from the fatigue. My appetite is still low because of cramping is dumping. I am currently on the highest dose of Zenpep. It has made a difference but it’s not perfect. It’s a long road but it beats the alternative. I was not recommended any more chemo and my ct scan looked good. Next even in 3 months. Fingers crossed. Also I have a wonderful team.

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Hi @wiredallwrong, you may wish to join this related discussion where members are talking about acinar cell carcinmoa.

- Anyone have Pancreatic Acinar Cell Carcinoma?
https://connect.mayoclinic.org/discussion/neuroendocrine-acinar/

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