Pancreatic Cancer Group: Introduce yourself and connect with others

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.

Welcome new members @teddybears @cturner0625 @jillywilly @nypatriot @catrinka58 @victoriadukes @dramagrandma1 @tiffboss.

@teddybears, do you have pancreatic cancer or are you caring for someone who has cancer?
@dramagrandma1, caregiving from afar is tough. I'm sure your daughter feels your love and caring no matter how many miles separate you. It is hard to know how to give her space when you're not there to read the signs. I get that. Does she or her husband share updates with the family in a group email or something like CaringBridge? That can help to stay connected and informed without having to ask questions.
@nypatriot, any updates? Has pancreatic cancer been confirmed or ruled out?
@victoriadukes, I bet the news of pancreatic cancer came as a shock. Similar to @cturner0625, a secondary medical issues helped catch pancreatic cancer early. You're definitely in good hands at Mayo (as you know). There are several discussions about Whipple surgery in the group. Here's one to get you started:
– Whipple procedure: What is the recovery like? https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/
@jillywilly, would love to learn more about you too. Have you or a loved one been diagnosed with pancreatic cancer?
@tiffboss and @catrinka58, telling family and friends is tough.

What are your tips for tellling family and friends about your diagnosis? How can you keep them informed but also take the time you need to focus on yourself, treatment and this new world of cancer?

Welcome new members @teddybears @cturner0625 @jillywilly @nypatriot @catrinka58 @victoriadukes @dramagrandma1 @tiffboss.

@teddybears, do you have pancreatic cancer or are you caring for someone who has cancer?
@dramagrandma1, caregiving from afar is tough. I'm sure your daughter feels your love and caring no matter how many miles separate you. It is hard to know how to give her space when you're not there to read the signs. I get that. Does she or her husband share updates with the family in a group email or something like CaringBridge? That can help to stay connected and informed without having to ask questions.
@nypatriot, any updates? Has pancreatic cancer been confirmed or ruled out?
@victoriadukes, I bet the news of pancreatic cancer came as a shock. Similar to @cturner0625, a secondary medical issues helped catch pancreatic cancer early. You're definitely in good hands at Mayo (as you know). There are several discussions about Whipple surgery in the group. Here's one to get you started:
– Whipple procedure: What is the recovery like? https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/
@jillywilly, would love to learn more about you too. Have you or a loved one been diagnosed with pancreatic cancer?
@tiffboss and @catrinka58, telling family and friends is tough.

What are your tips for tellling family and friends about your diagnosis? How can you keep them informed but also take the time you need to focus on yourself, treatment and this new world of cancer?

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.

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.....

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.

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