Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

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.

cturner0625 | @cturner0625 | Sep 7, 2022

In reply to @teddybears "This is positive to hear. Thank you for sharing." + (show)

You are very welcome. Everyone is different and symptoms may not always be "textbook".

jillywilly | @jillywilly | Sep 8, 2022

In reply to @cturner0625 "Hi everyone...My name is Christie and I was diagnosed with Pancreatic Cancer November 3, 2020 at..." + (show)

@cturner0625

Hi everyone...My name is Christie and I was diagnosed with Pancreatic Cancer November 3, 2020 at the age of 49. In December 2019 I went to the ER on Christmas Eve for a kidney stone. I knew I had the stone but it decided it wanted to celebrate as well. I went to the ER, got my usual pain cocktail when I have a kidney stone attack and was told that I had a stone in each kidney after my CT w/contrast. Typically I look over my test results and labs but I didn't this time because I already knew I had a kidney stone. The only one I thought I has was found in February of 2019. Fast forward to September 2020 (9 months later). I was rear ended and because of my injuries (minor ones) I was referred to the chiropractor by the ER doctor. I also had x-rays and and tests while in the ER for this accident and they said the same thing - I have kidney stones and that I had a concussion. This accident however saved my life. Before going to chiropractor I pulled my records from Christmas Eve 2019 because I wanted to see where my stones was located and the size. I have issues passing stones and wanted to make sure it was not bothered by my upcoming therapy. As I was looking thru my CT scan I noticed (3) issues on the final diagnosis - (1) - Kidney stone left kidney (2) Kidney stone right kidney and (3) 11.4mm tumor in pancreatic tail that needed follow up with an MRI protocol. I was floored to say the least. I immediately made an appointment with a gastro doctor at MUSC. Saw her on the last Thursday in October, had a biopsy on the following Monday, November 2nd and I was told when I woke up that I had Pancreatic Cancer. Surgery followed November 30, 2020. I had my pancreatic tail removed and my spleen. My spleen was fine but because of all of the connections that would have needed to be made from the tail removal it was safer to just remove it. My tumor was encapsulated which was a gift in itself. I was diagnosed with T1N0M0 tumor which is a stage 1 with no metastases. I was very lucky. This tumor developed to the size it was between February 2019 to December 2019 and I had it for another 11 months before it was removed. Surgery removed the tumor and no treatments (chemo or radiation) were necessary. I am the owner of my body and it is my responsibility to look over my paperwork however, I should have been told by the ER doctor what they found. I was drugged up and there was no mention of this to me or my daughter. I have read articles that say symptoms typically do not show in the first stages but I disagree. I did not lose a significant amount of weight because I have thyroid issues and my weight fluctuates. I did not have jaundice BUT I had terrible heartburn, my left side just under my ribs hurt terribly but not all of the time. The pain did radiate at times to my back. I had side cramps, loss of appetite, fatigue. Felt full after just a few bites. No family history of pancreatic cancer. Those symptoms could have been any number of things but they weren't. They were my tumor. My cancer. Doctors just shrugged it off as Gerd and prescribed heartburn medicine. No one wanted to listen but that hateful, non-discriminating disease was lurking and growing. I thank GOD every day for sparing me but I am realistic. I know cancer can come back and that it can come back with a vengeance. I go for 6 month check ups until December 2025 with my next one next month. I am always positive. That is what got me thru this. I had surgery on a Monday, was up walking around on Wednesday, went home on Friday and back to work the following Wednesday with my lovely accessory called a drain. Power of positivity.

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🙏♥️

nypatriot | @nypatriot | Sep 18, 2022

Hi-
I'm a newbie here.
I'm a 55 YO Male and was recently told that my main pancreatic duct is dilated near the head up to possibly 6mm. This was confirmed via an MRI w/Contrast. The doc scheduled an ERCP for 10/3.

No liasons or cysts were seen in the MRI report. No loss of weight or any other symptoms... Should I be alarmed based on the above at this point?

catrinka58 | @catrinka58 | Sep 19, 2022

Hi my name is Cathy and I’m 64yrs old. Recently had a CT Scan post endoscopy as he was concerned about my weight loss. Ct showed a 5cm mass transverse and 3.7cm vertical. The mass is located at the head and middle of the pancreas. Had the CA19-9 blood test which revealed 1,878 mapping count. Now scheduled for an EUS with pancreatic biopsy 9/21. So just in the beginning of this long journey. Most difficult part, telling family and friends 😞

Victoria Dukes | @victoriadukes | Sep 20, 2022

Wow. Never in my wildest dreams would I ever believe I'd be posting something about myself in a group like "the C word"; most especially pancreatic.
I will try to condense this so as not to be too wordy. On July 13, '22, I had a Lap-Band converted to a Rouex-En-Y gastric bypass. Did well post-operatively for a solid month and stayed on liquids and read tons about the procedure before making the decision. Exactly 1 month post-op, I noticed daily that I was getting weaker in spite of my walking around the house plenty and getting up every hour (I work for Mayo Clinic Florida remotely and partly on campus). After 2 Rescue transports to Mayo ER because of the weakness getting worse daily to the point I couldn't walk. Two admissions; August 14-17 and the second August 25-31. On the first admission lab work immediately showed that my potassium was at critically low level - had to have 7 bags IV potassium for 3 days; cause of the depletion still was undetermined. Second time ER - August 25 was admitted to the ER Hybrid Care Unit (observation until hospital bed is open) A wonderful Hospitalist came in to confer with me; staring intently at my electronic record; VOILA!!! Immediately pin-pointed on my medication list - HCTZ (Hydrochlorothiazide a diuretic given by my PCP I'd taken for years). Turns out, after the gastric bypass your absorption is totally changed - without being technical - the diuretic was literally kicking out my potassium....FINALLY we know the cause. Of course, no more of that HCTZ. Sad that it wasn't known about during my pre-op testing. SO.....you may wonder why I write on the PANCREATIC CANCER group and share???
Thank God - on my August 10 ER trip, the ER physician ordered a CT Abdomen/Pelvis because of the fireball pain I was having for days in my upper tummy/epigastric area - (was looking for a marginal ulcer). Upper endoscopy confirmed the ulcer, which should go on to heal. Given liquid medication 4x day that takes care of any symptoms but takes like...........well you know.
SO back to the CT Abdomen and what it DID reveal:
The radiologist will call it an 'incidental finding' and a little something extra found when looking for something else. My little bonus - Since I work in radiology had the freedom to reach out to one of our genius guru's of MRI Pancreas - was fortunate enough for him to read my study and have me page him afterwards.
IMPRESSION: Cystic mass measuring 4.5 cm in the pancreatic head/uncinate with solid enhancing components measuring up to 2.0 cm. Findings are suspicious for malignant degeneration of a sidebranch type
IPMN. Nothing to suggest advanced locoregional or metastatic disease. Surgical consultation
recommended.

I am blessed to have been able to 'get the ball rolling' in a very swift fashion....had the surgical consultation with THE most phenomenal surgeon I could have - I am scheduled for a Whipple procedure on Nov 7.
Regardless of being in the BEST hands, I have had a hard time wrapping my head around this. When he was talking with me in consultation, I was too stunned to speak...I believe I just nodded. It felt too surreal. My pancreas? Whaaat? I just had surgery in July, and now they're gonna go in the same area with a really big incision? Me? I have such strength through The Lord, whom I know is right beside me and will be through this whole ordeal. But my mind is like a roller coaster. The "what if's" and that "C" word I read about daily in my work. But ME?
Can anyone here relate? I surely need some advice from a success story....post-op course, etc.

dramagrandma1 | @dramagrandma1 | Sep 21, 2022

THOUGH I DO NOT HAVE PANCREATIC CANCER, MY FIFTY FIVE YEAR OLD DAUGHTER DOES. I AM IN ANOTHER STATE THEN SHE AND HER HUSBAND AND THOUGH NOT A "CAREGIVER", I CARE SO VERY MUCH.
I STRIVE TO "GIVE HER, HER SPACE" AS SHE REQUESTS AND SHE REPEATS, DON'T TAKE IT PERSONALLY. AS IN, "QTIP";QUIT TAKING IT PERSONALLY, EASIER SAID THEN DONE, AND AT 83 YEARS OF AGE I CONTINUE TO TRY AS WELL AS BE OF SOME MEANINGFUL SUPPORT TO HER AND HER HUSBAND.

tiffboss | @tiffboss | Sep 22, 2022

Hi, my name is Tiffany, and I’m 57 years old. On 8/16/22 an abdominal CT revealed a mass on my pancreas. I was immediately referred to the Mayo Clinic in Rochester where additional tests and a biopsy confirmed it to be adenocarcinoma. The mass is 3.6 cm x 3.0 cm. I was told that it is not currently a good candidate for surgery because of its proximity to 2 arteries. I had hoped to receive all of my treatment at Mayo, but they are an out of network provider and my insurance denied approval. So, I’ll be treated by the University of Iowa Hospital. This week I had a chemo port put in, a chest CT, and a PET scan. Thankfully, it does not appear to have spread anywhere, and I have my first chemo treatment scheduled for Wednesday. I’m both excited to get the ball rolling on my treatment, and a little nervous about how the chemo will affect me.

This past month has been such a mixed bag of emotions! The hardest part by far was telling my parents. They’re in their 80’s and we’re very close. I’m trying my best to keep a positive attitude, and have faith in my doctors and treatment.

dramagrandma1 | @dramagrandma1 | Sep 23, 2022

YOU, AN INDIVIDUAL THINKING SO COMPASSIONATELY ABOUT
THOSE AROUND YOU WHO ATTEMPT TO "HELP" AS IN PARENTS,
ARE GOING THRU THIS WITH YOU. THAN

dramagrandma1 | @dramagrandma1 | Sep 23, 2022

In reply to @dramagrandma1 "YOU, AN INDIVIDUAL THINKING SO COMPASSIONATELY ABOUT THOSE AROUND YOU WHO ATTEMPT TO "HELP" AS IN..." + (show)

THANK YOU

woodlanddsm | @woodlanddsm | Sep 24, 2022

In reply to @tiffboss "Hi, my name is Tiffany, and I’m 57 years old. On 8/16/22 an abdominal CT revealed..." + (show)

Hi @tiffboss : My brother has been treated for stage 4 pancreas cancer at the University of Iowa Hospitals and Clinics for the past two years. We have found them to be efficient, caring and responsive. My brother sees Dr. Berg and his PA and both have been very good. I hope that you have the same experience. When my brother was diagnosed he too had arterial involvement with the cancer but did 9 rounds of Folfirinox and then had 5 weeks of MRI guided radiation. He then underwent a Nanoknife operation with Dr. Chan. Hopefully your chemo will shrink the mass small enough that surgery is an option. Positive thoughts sent your way.....