Pancreatic Cancer Group: Introduce yourself and connect with others

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?

@marvinjsturing

Heading for Rochester on Thursday for a PET/MRI. Six years ago after my Whipple, I had a lot of scanxiety going back for the first scan. Things got better as each successive scan showed no cancer. Now, with the recurrence of my pancreatic cancer, I again have a lot of scanxiety. I just want to know what's happening. If the tumors are not growing, there will be no treatment – just monitoring with future scans. If the tumors are growing, I will need chemo – Irinotecan & 5-FU – along with dialysis.

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@marvinjsturing, I can imagine the scanxiety has returned. I will be thinking of you all the way and will be interested in the outcome, hoping for the best.

Have you got some pleasant things planned between now and Thursday to help distract you? Will you be driving or flying to Rochester?

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@colleenyoung

@marvinjsturing, I can imagine the scanxiety has returned. I will be thinking of you all the way and will be interested in the outcome, hoping for the best.

Have you got some pleasant things planned between now and Thursday to help distract you? Will you be driving or flying to Rochester?

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@colleenyoung We are driving – 3 1/2 hours – first appointment at noon on Thursday. Nothing planned before the scan, but after the scan we are meeting with 2 of my sisters and their husbands in La Crosse, WI for the weekend.

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@marvinjsturing

@colleenyoung We are driving – 3 1/2 hours – first appointment at noon on Thursday. Nothing planned before the scan, but after the scan we are meeting with 2 of my sisters and their husbands in La Crosse, WI for the weekend.

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The older I get the more I realize that life is all about relationships. It is so great that you are connecting with family. I pray that you are lifted up and at peace during this time of uncertainty.

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@marvinjsturing

@colleenyoung We are driving – 3 1/2 hours – first appointment at noon on Thursday. Nothing planned before the scan, but after the scan we are meeting with 2 of my sisters and their husbands in La Crosse, WI for the weekend.

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@marvinjsturing Saying a prayer for you, Marvin, as you travel and for your upcoming scan.

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My PET scan last week showed that the tumors are not growing. I do not need chemo at this time. Treatment plan is to have quarterly scans to monitor the tumors. Had a great weekend with my sisters – lots of visiting, food, swimming, ride on a paddle boat and a visit to an apple orchard.

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@marvinjsturing

My PET scan last week showed that the tumors are not growing. I do not need chemo at this time. Treatment plan is to have quarterly scans to monitor the tumors. Had a great weekend with my sisters – lots of visiting, food, swimming, ride on a paddle boat and a visit to an apple orchard.

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@marvinjsturing Whew! Good to hear. Take care

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@mscarano

Have diagnostic tests scheduled in Rochester on Oct 27 and Dr. Truty appt on Oct 28 to determine best path forward. Coming from New Jersey so first time traveling out of state (flying) since COVID-19,

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@mscarano, how are you doing? I'd love to get an update on your appointment with Dr. Truty and the treatment plan. How are you feeling about things?

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Dr Truty stated I am not a candidate for surgery and tumor is active and locally advanced. Recommends I find a local oncologist to work with that will meet my quality of life needs. They did fix my bile stent and put in a stomach stent to my small intestines to better deal with my discomfort.

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@mscarano

Dr Truty stated I am not a candidate for surgery and tumor is active and locally advanced. Recommends I find a local oncologist to work with that will meet my quality of life needs. They did fix my bile stent and put in a stomach stent to my small intestines to better deal with my discomfort.

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What kind of discomfort are you having? Can you share more about the stents? After my husband eats, sometimes, not all the time, his stomache swells up and gets rock hard. The pain for him is excruciating…. Wondering what's going on….. Thanks for sharing what your experience has been…

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@marvinjsturing

My PET scan last week showed that the tumors are not growing. I do not need chemo at this time. Treatment plan is to have quarterly scans to monitor the tumors. Had a great weekend with my sisters – lots of visiting, food, swimming, ride on a paddle boat and a visit to an apple orchard.

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@marvinjsturing I'm so pleased to hear that there was no new growth, Marvin! It sounds as if you had a nice visit with your family as well.

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@mscarano

Dr Truty stated I am not a candidate for surgery and tumor is active and locally advanced. Recommends I find a local oncologist to work with that will meet my quality of life needs. They did fix my bile stent and put in a stomach stent to my small intestines to better deal with my discomfort.

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@mscarano, that must've been difficult news to hear that you're not a candidate for surgery. Do you already have a local oncologist? I might also ask about a palliative care team as they specialize in pain management and comfort care. Do you know if they provide palliative care where you live?

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Agree, need to include Palliative Care and also alternative options. Need to start working it, but don't know what I'm up against and how best to determine what doctors/teams are best to work with in my area. Need to also include Cigna insurance to figure out what they cover in-house.

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@mscarano

Agree, need to include Palliative Care and also alternative options. Need to start working it, but don't know what I'm up against and how best to determine what doctors/teams are best to work with in my area. Need to also include Cigna insurance to figure out what they cover in-house.

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Those are all important considerations, @mscarano. Will you keep posting as you find answers?

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Yes, for now.

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