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?

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

@srhyne

Last week I had a biopsy of pancreas and endoscopy; Dr. explained I had pancreatic cancer and a plugged bile duct. This week I am having another CT scan and meeting with oncologist. Next week Dr. Ramage will use endoscopy to place a stent in bile duct. This week has been difficult with my emotions taking over so much, and I don't want to put my family through this. I am very grateful for the Mayo support group since we don't live near a Mayo Clinic. I am retired educator--teacher, local education supervisor, and program director for NC state education dept. So I prefer to have all info I can learn about what to expect and how to be most productive for as long as possible. I am married to a wonderful and unusual man who retired to care for his first wife who was on oxygen and an invalid for their last 3 years. My husband had fibrosis in lungs and lived for 12 months after the diagnosis. I was a widow for 10 years before my second marriage--both to really great men. Right now I need help with handling my emotions and learning all I can about living as well as possible. Thank you for being there!

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Welcome, @srhyne. Things look like your moving in the fast lane right now. This must be so much to take in and at the same time to keep up with appointments and everything you're being told or need to do.

That all takes an emotional toll for sure. I know that fellow members like @marvinjsturing @stageivsurvivor @jdjabara @beachdog @tpl @bede @thebobk @helenar @lfitz know exactly what you're going through. Some of them, like you, have been recently diagnosed and others have been living with pancreatic cancer for a while or caring for someone living with pancreatic cancer.

srhyne, as you're in the info gathering stage, ask questions, ask questions, ask questions, both of your care team and here.

How are you feeling today? Any questions about this week's upcoming CT scan and meeting with the oncologist?

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@colleenyoung

Hi @dakotarunner @marvinjsturing @moo1 @cindee60 @dianamiracle @natalex @susandc @salledell @nasagia36 @beachgirl23 @search4healing @nogginquest @sucante. Welcome to the new group on Connect dedicated to pancreatic cancer:
- Pancreatic Cancer https://connect.mayoclinic.org/group/pancreatic-cancer/

Be sure to +Follow the group. Why not start by introducing yourself? Share your story: When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

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Last week I had a biopsy of pancreas and endoscopy; Dr. explained I had pancreatic cancer and a plugged bile duct. This week I am having another CT scan and meeting with oncologist. Next week Dr. Ramage will use endoscopy to place a stent in bile duct. This week has been difficult with my emotions taking over so much, and I don't want to put my family through this. I am very grateful for the Mayo support group since we don't live near a Mayo Clinic. I am retired educator--teacher, local education supervisor, and program director for NC state education dept. So I prefer to have all info I can learn about what to expect and how to be most productive for as long as possible. I am married to a wonderful and unusual man who retired to care for his first wife who was on oxygen and an invalid for their last 3 years. My husband had fibrosis in lungs and lived for 12 months after the diagnosis. I was a widow for 10 years before my second marriage--both to really great men. Right now I need help with handling my emotions and learning all I can about living as well as possible. Thank you for being there!

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@helenar

@colleenyoung I was wondering if I can send my reports, test and scans to Mayo Clinic for a second opinion and would there be any costs involved? I am from South Africa

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Hi Helen, there may be several options for you to get a second opinion from Mayo Clinic. It's best to contact Mayo directly to know your options and costs.

See the information for International Patients on this page: http://mayocl.in/1mtmR63
Submitting the form is the first step and it costs nothing. It just starts the contact and inquiry.

It might also be worth asking if Mayo experts might work with local oncologists. Not sure if this is a possibility in your case or not. But worth asking.

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@colleenyoung I was wondering if I can send my reports, test and scans to Mayo Clinic for a second opinion and would there be any costs involved? I am from South Africa

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@ggst

Just diagnosed by MYChart on Thursday, Aug. 18. Had a brief discussion with PA who ordered the scan and have a liver biopsy scheduled for Friday Aug. 26. I feel my clinic, Park Nicollet has left me flying in the wind. I have questions and no answers. I was a previous patient for knee arthritis at Mayo so I called them. They want the biopsy results as soon a I get them and will slot me in for an exam. I’m exhausted as the pain wakes me up at night. Tylenol mostly helps. Think the pain is related to what I eat and right now nothing is appealing. I need some guidance.

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I’ll say prayers for you♥️🙏hope pain n sleeping improve

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@ggst

I do have a patient number at Mayo and access to the portal. I was seen for my knees in 2020. They have access to MYChart from Park Nicollet. I don’t have a team at Park Nicollet. Just the PA I saw who ordered the scan. I have not talked to a doctor there at all. I feel they have left me twisting in the wind- which isn’t the first time! Thank you for the anxiety link- I will check it out. I used to regularly do meditation so looks like I will be again.

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GGST, since you are a Mayo patient with an account on the portal, I might suggest inquiring about temporary pain medication options until you can be seen. Might be worth a try. It's so hard when you're between diagnosis and consultation.

If you find it hard to focus on meditation, I might suggest searching up some simple guided imagery aids online. I simply use the ones on my Fitbit when in a pinch. Even a short 2-minute guided mindfulness can help reset.

Here are a few from Mayo's Dr. Benzo, specialist in Health & Mindfulness
https://www.mayoclinic.org/patient-education?PLID=0_kwun3krq&_ga=2.246771073.408419001.1661198619-1419036637.1645131510

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@colleenyoung

@ggst, I agree with @pmerrill54. Friday is a long time to wait while in pain and not able to sleep. I would contact your primary care physician as suggested but also the current team you have Park Nicollet.

Do you have a Mayo Clinic patient number and/or access to the Mayo patient portal already or not yet?

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I do have a patient number at Mayo and access to the portal. I was seen for my knees in 2020. They have access to MYChart from Park Nicollet. I don’t have a team at Park Nicollet. Just the PA I saw who ordered the scan. I have not talked to a doctor there at all. I feel they have left me twisting in the wind- which isn’t the first time! Thank you for the anxiety link- I will check it out. I used to regularly do meditation so looks like I will be again.

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@pmerrill54

Friday is a long way off if you’re in pain and not sleeping! Can your primary care physician help?

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I’m going to try an oxy tonight as I have a recent prescription from November. If that does not work my primary care doc will be next.

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@ggst

I’ve been diagnosed on Aug 18- through My Chart and have a liver biopsy scheduled for Friday. Called Mayo and they will take me as soon as my results are in. In the meantime, I am having so much pain at night and trouble eating. And high anxiety. Any help is appreciated.

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@ggst, I forgot to address the anxiety you're experiencing too. I can imagine that anxiety is running high right now. Here is a self-guided course that you might find helpful.

- Stress Management for Cancer https://mccmscontent.mayo.edu/LSC/CEC/stress-management-for-cancer/index.html#/

What helps you calm your anxiety?

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@ggst

Thank you, Pmerrill54. I still don’t have a team at Mayo and my biopsy is at Park Nicollet on Friday. After the results, Mayo will assign a team. I also called The U cancer center so will see what they have to say. Meanwhile, I am up most of the night every night with pain. Gummies and Tylenol are not handling it anymore. I do have some oxy left over from recent knee surgery so I may try that. But I will ask about the patch when I get a team. Much appreciate your reply.

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@ggst, I agree with @pmerrill54. Friday is a long time to wait while in pain and not able to sleep. I would contact your primary care physician as suggested but also the current team you have Park Nicollet.

Do you have a Mayo Clinic patient number and/or access to the Mayo patient portal already or not yet?

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