Pancreatic Cancer Group: Introduce yourself and connect with others

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!

I appreciate you sharing more information, @ryanmary3341. I can understand that the surgery was difficult. How long were you hospitalized after the surgery? Do you have any blood sugar problems?

You mentioned that the tumor (or cyst) was precancerous. Did the biopsy give a name to the tumor?

I was hospitalized for 12 days. I do have a blood sugar problems. I understand it common with my condition. If they did give a name to my tumor, I do not remember. If it is important, I will investigate.

Hello @ryanmary3341

I just wondered about the name of the tumor because I feel it is important for each patient to be educated about their health. Also, we may have other members on Connect who have had the same type of tumor/cyst and we can introduce you to them for further support and information.

By understanding your health condition better you are able to advocate for yourself. This type of knowledge is generally empowering to patients.

If you are interested in finding out what type of tumor you have you can read the biopsy report. If your doctor or hospital has a patient portal, you can read and print the report and that will give you all the information about the biopsy results. Otherwise, if you want to know more about the tumor, you can call the doctor's office and have them mail you a copy of the biopsy report.

Yes, you are right, blood sugar problems are common with any disorder of the pancreas, especially if there is surgery on the pancreas.

Does your blood sugar high or low? How do you manage your blood sugar problems? Do you take meds?

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 Again: We are at MGH in Boston and they have told us that his cancer is confined to the pancreas but it is not operable at this time. They have communicated hope that the chemo Folfiorinox will be approximately 4 mos and then radiation another 6 weeks, hopefully followed by surgery at the end of the year. The goal is to get the tumor to come away from the blood vessel so they can operate. I have read in the Mayo lit that PET imaging is important in guiding the therapies. I know they don't use PET at many other places. How important is it? Anne

Hello @annebauer19

You ask a good question. As you know, on Mayo Connect we are not medical professionals, but patients who share their experiences. I'd like to tag some of those members in Connect to see if they have some information about your question. I'd like to tag @marvinjsturing
and @ryanmary3341
There is also a discussion about the PET scan in Connect's pancreatic cancer discussion, here is the link, https://connect.mayoclinic.org/discussion/pet-results-pre-potential-whipple-treatments/.

Perhaps your husband's oncologist or radiologist could help you with this? It wouldn't hurt to ask the question.

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.

Hello again: thanks for the comments about PET scans. My husband has started chemo this week so we are just learning the rhythm of the 2 week cycles. So far his biggest complaint is stomach pain which comes and goes. It's not clear if it's related to the tumor. Docs seem to be unsure. Has anyone experienced this and found something that helps?? I am trying to keep up his spirits and mine. This pain seems to drain him.