Pancreatic Cancer Group: Introduce yourself and connect with others

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.

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

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

@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

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.

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!

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?

I am the spouse of a pancreatic cancer victim. We found out he has it on Dec. 15, 2022. He has had four Florfirinox chemo treatments and 7 rounds of Abraxane and Gemcitabine chemo treatments (sp??). He is stage 4 with metastasis to the liver. We are at the Mayo clinic. he also has Peripheral Artery Disease, but has never smoked or had a weight problem.

Hi @srhyne! I’m new to the group although I was diagnosed in October 2021. I had treatment locally but am now at Mayo heading for a complete pancreatectomy— a word I don’t know until about 6 months ago. If there is one thing that has stood me in good stead as a mantra of sorts, it’s this: You are not a statistic. Statistics say you should be terrified of pancreas cancer. But statistics don’t acknowledge all the many exceptions—and there’s no reason you can’t be one of the better outcomes! So focus on learning from those stories
That said, there’s a lot to learn. Take control of the things you can, like diet, exercise and sleep. The common“mindset“ advice is a two-edged sword. It can turn into blaming the victim if things seem not to go right (“You weren’t thinking positively enough!” That’s nonsense, IMO)
One more thought: Don’t give up if at some point down the road your local team says they can’t help. I was being treated at one of the best cancer centers in the country in Boston, which thinks of itself as a medical Mecca. After 12 rounds of chemo my local surgeon said he thought surgery was too risky, end of story, basically. I had my scans sent to Mayo and they told me, to the contrary, I’m an ideal candidate for a very complicated surgery that they do more of than anyone else. So here I am, doing “prehab” to get prepared.
Keep plugging and putting one foot in front of the other, but let people help you.
Good luck!

My doctor suggested a Whipple. What is the recovery like?