Pancreatic Cancer Group: Introduce yourself and connect with others

Hello to the Group, my name is Olga, I have not yet been diagnosed, but am attempting to get to that stage. I have only Medicaid, and am in FL. so I have limited options at this point. I have just completed an MRI as well as consulting a qualified Gastro here in FL. paying cash for a single visit. The next step for me is seeing a Kidney specialist this week so I'll know a bit more after that, as he will review the results of my MRI. I'm hoping there is some option for getting a consult from a Mayo Dr. to help in the diagnosis from the MRI and other material I've put together in the last couple of years with the symptoms I've been experiencing. I'm in a situation where I have to limit my use out of plan Dr's but I feel it will be worth it to get a one time opinion which I hopefully will be able to relay to my limited Medicaid plan situation. Is there any means whereby I could enlist the expertise of a Mayo Dr. for a review of what I have? If you know of a way to do this I'd be very grateful....if that is possible please let me know. Thanks Olga

Hello I am Anne, my husband Ken was just diagnosed with pancreatic cancer in the last few weeks. Like all of you probably it felt like being hit by a truck. After a couple of weeks of roller coaster emotions we are now settling in to treatment. He will start chemo soon and then radiation and hopefully then surgery. We are of course very scared about chemo and how it will affect him. I must say it is very encouraging to hear from you who have been through this. I have already learned from your posts and will have a million questions.

Hello @annebauer19 and welcome to Mayo Clinic Connect. I am sorry to hear about your husband's diagnosis of pancreatic cancer. It sounds as if you have a plan in place for his treatment and that is always a good thing. I am glad that you have learned from the posts here in this discussion group. Connect does have some amazing members who post about their experiences. Patients have so much knowledge and experience and Connect is a place where they can share that information and those experiences.

I would like to invite some others to this conversation including @marvinjsturing @novak120 @kamnorris2.

Just a few questions, if you are comfortable answering them: Has Ken been given a timeframe for his radiation yet? Has his cancer been staged?

I look forward to hearing from you again. Will you continue to post as
you have more questions?

Hello @olgaphil and welcome to Mayo Clinic Connect. Connect is a great way for patients to interact with others who have similar diagnoses. It is a place where patients can give and receive support along their health care journey.

How you are feeling? You mentioned that you have had an MRI and consulted with a gastro specialist and now need to see a Kidney specialist. If you are comfortable sharing more: what are your current symptoms? What have the MRI and consult revealed about your health?

Since you have limited medical insurance coverage as well as limited funds, I would encourage you to first talk with your hospital's social workers. They are often able to steer people with financial constraints and help them to find the services that they need.

There is an organization called Aunt Bertha. They also have a service to help patients. Here is a link to their website, https://www.findhelp.org/

If you click on the link you will see that you will be asked to put in your zip code and it will bring up various services available in your community.

As a first step, however, I would first encourage you to talk with your hospital's social worker.

Hi Olga, I agree with everything that @hopeful33250 suggests. Social workers can really help.

To have Mayo experts review your medical records, contact Mayo Clinic in Jacksonville, Florida. Here's the contact information http://mayocl.in/1mtmR63

While Medicaid may be limiting, you may qualify for Financial Assistance at Mayo Clinic. See more info here: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

Please keep us posted as you find out more about your diagnosis. Olga, is pancreatic cancer suspected at this point?

Hi Teresa, thanks for your reply. I'm dealing with pain in my back that seems continual, I'm doing ok but did a few hours in the ER yesterday due to extreme symptoms at one point. I'm only just getting to a few dr's. Tomorrow I will see a Kidney Dr. that is good and willing to help me look at this symptom batch. Next I have a Gastro sched. for the first week in Jul. I've only consulted with my GP until now. However in the past three years, I've had appointments with three separate gastros. I have a few years of symptoms such as digestion problems and back pain, but getting to the pancreas is just now happening. If the diagnosis from these next two specialists does not reveal an answer, I very much want to pursue Mayo due to the much greater experience and ability to connect the dots as they say. I have great difficulty with my diet. There only are a few things I can eat at this point. And yet I still seem to have reactiods as i did this week. I will save on my browser those recommendations you have made and going forth, they should be very valuable, thanks so much to you and the moderator!!!! At this point I have to go one step at a time, but I need an answer I hope and pray, as this kind of sensitivity to food is a real drag and leaves me tired much of the time.

Hi Moderator, thanks so much for your reply. I will pursue the MSW at the Hosp. and seek recourses from them, sounds like a great idea. I appreciate the link about Mayo's Fin. Ass. I'll be back in the next week of two as I can finally take the labs and MRI results to the Specialists I have appts. with. Blessings to you and thanks again for your help. Olga

I was diagnois with pancreatic cancer about 10 weeks ago, had whipple procedure 2 months now and will start chemo on Friday. Fortunate for me it is only in stage 1 , so recovery looks good. I did spend 12 days in the hospital after my surgery and was on TPN for 1-1/2 months and started eating food in the last 2-1/2 weeks. My stomach is taking a little time getting adjusted to food, but I am able to keep in down. My doctor said my condtion is pretty much normal and have side effect of a slow stomach emptying condition. I have to keep on telling myself to be patient and not to rush my recovery. Anyone has any advice for me, please let me know! Aloha & Mahalo!

Hello @ryanmary3341 and welcome to Mayo Clinic Connect. I'm glad that you joined Connect and the discussion group for pancreatic cancer.

I'm sorry to hear of your diagnosis but you must feel fortunate to have been diagnosed at Stage 1. It sounds like you are progressing well with the treatment plan. Do you know how many months/weeks you will be having the chemotherapy?

As you were diagnosed at an early stage I'm wondering what type of symptoms you were having that led to the diagnosis. Please share as you are comfortable doing so.

It started around 6 months ago. I was going to the bathroom #2 for anywhere from 3 to 6 times a day and losing weight. At first I thought it was great, but when it continued I got concerned, so went to the doctor, got tested and diagnosed with EPI and after further testing, I was told that I had a cyst on my pancreas that was pre-cancers and that I should see an oncologist surgeon. The surgeon determined that the only way to move forward would be to have a "Whipple" procedure. After many days of investigation, I felt surgery was the only option. It was a"very" tough surgery to go through. Moving forward, chemo looks like the best option!