Monitoring a Pancreatic Cyst?

Posted by mikewdby @mikewdby, Aug 31, 2023

Hello,…I have to ask for people’s experience and support.

I am 68 years old. In June of 2022, during a routine examination (for a hernia) my GP a CT Scan picked up a 4cm Cyst on my Pancreas. Subsequently I had an MRI in the Twin Cities the next day. Being my GP is Mayo trained, and we live the summer months in the Twin Cities, they were able to get in me at Mayo within 2 week.

July, 2022 Mayo conducted a contrast MRI AND an EUS. The MRI confirmed the 4cm cyst. They did NOT take a sample biopsy of the Cyst as they said it was too risky (close to a vein). However they said it had no suspicious signs (whatever that means). My CA-19 score was ‘16’. They said I should follow up with them in 3 months for another contract MRI. I did so at Mayo in October - no signs of growth and my CA-19 was ‘15’. A followup was suggested for late January.

Since we spend our winter months in Ft. Myers, FL, The follow up with the fun at the Jacksonville Mayo clinic in late January 2023. No growth and CA-19 was ‘16’. A followup then was Suggested when we got back to Minnesota. In late July, we had a follow up contrast MRI at the Rochester Mayo - no growth, same CA-19 score. At the time I was told, that if it showed no growth in everything, stay the same, we could go with an annual follow up.

However, a few days later after I thought, I had a year of “breathing room” to relax, The doctor Team assigned to me recommended that I do another six months follow up due to the size of being 4 cm.

So now I am confused. Has anyone else had cyst monitored of this size and the time periods I am experiencing?

I am slightly obese (5’9 250#) and a surgeon (Dr. Smoot) once had a video session with me saying I would be in the ‘high risk’ category plus my pancreas was ‘spongy’ and prone to leakage and thus complications. Of course, my initial reaction was “let’s take it out of there while it’s not cancerous. Dr. Smoot did say that in the next 3-4 years there will be other treatments / methods (without mentioning what those options are) for my type of cyst.

So I will need to go back for a few days “vacation” in Jacksonville in late January - again.

I don’t know if I can mentally take this roller coaster ride every six months. I have faith in God and yet I am someone embarrassed that I am not trusting in His Will. His Will has gotten me this far…I feel unworthy asking for more good results.

Would like to here from Others who have had pancreatic cyst that were monitored for a period of time, how long that time was,and what was decided. Thank you and God Bless.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

markymarkfl | @markymarkfl | Dec 6, 2023

In reply to @rwr "During a scan on my prostate my urologist detected a cyst on my pancreas. I had..." + (show)

You should definitely be seeking a second opinion for multiple reasons; #1 being the immediate family history; and #2 for being "in the system" at your preferred pancreatic cancer center of excellence sooner rather than later. (It's really hard to get an immediate specialist appointment when you walk in "cold" with a fresh diagnosis.)

The specialist should (and even a generalist could) order the genetic tests @mnewland99 mentions. Genetic status plus family history can guide where you land on MD Anderson's screening guidelines. Page 2 of this link: https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/screening/screening-pancreatic-web-algorithm.pdf

rwr | @rwr | Dec 8, 2023

In reply to @rwr "During a scan on my prostate my urologist detected a cyst on my pancreas. I had..." + (show)

Thanks for info. Definitely going to get ATM AND BRCA test. I live in a city that has a center of excellence cancer center.

ncteacher | @ncteacher | Dec 8, 2023

In reply to @rwr "Thanks for info. Definitely going to get ATM AND BRCA test. I live in a city..." + (show)

I don't know of a specific test for ATM and the BRCA mutations. Look for a genetic assessment that screens dozens of genes. The one I took in January screened 84, which was (I was told at that time) the most they could review. By doing this, you can do only one blood draw and get as much info as possible.

Colleen Young, Connect Director | @colleenyoung | Dec 13, 2023

In reply to @rwr "During a scan on my prostate my urologist detected a cyst on my pancreas. I had..." + (show)

@rwr, you may also find these related discussions helpful about monitoring a pancreatic cyst:

- Monitoring a Pancreatic Cyst?
https://connect.mayoclinic.org/discussion/monitoring-a-pancreatic-cyst/
- Cyst on Pancreas?
https://connect.mayoclinic.org/discussion/cyst-on-pancreas/

mikewdby | @mikewdby | Dec 13, 2023

THANK YOU Colleen for sharing this thread with me. It meant a lot.

Yes, I’m still anxious (I call it ‘scanaxiety’) about my upcoming contrast MRI @ Mayo Jacksonville (January 10th) as we are down here during the winter months. I love my Dr team @ Rochester and wish I was having it done there,…should I be concerned that I’m down here and not in MN?

I’ve been hearing of clinical trials and new blood tests for PC diagnosis, but when I’ve asked my Mayo Dr team, (I even volunteered as a ‘guinea pig’ of sorts) expressed that is not yet in their protocol. That was indeed disappointing. Is there a way I (we) could at least find out if they heard of them and are being investigated…just thought I would ask.

I ask myself if I should seek a second opinion at the Moffit Cancer Center in Tampa - said to do the most Whipple surgeries in the SE United States…thus I thought they would be capable. Have you heard of Moffit?

However as strange as it may sound, I’m afraid to go there as wonder if they have a different opinion?…then what do I do as all of my family is in MN? What would my team at Mayo do if they gave another option as I do not what any surgery or treatment down in Florida away from my family.

Meanwhile I have been reminding myself towards having stronger Faith and Trust in God.

Thank you and others who may reply…

~ Mike

yellowdoggirl1 | @yellowdoggirl1 | Jan 1 6:39am

@rwr, and everyone, I'm a total newbie here with this, and shocked and scared. I also have celiac disease, pernicious anemia, and undifferentiated connective tissue disease.
So, on to business: December 8th had terrible pain in chest and upper right abdomen and back. Went to hospital by ambulance admitted for 3 days. Spiked a fever, liver enzymes and blood values all wonky, checked for every disease I could think of and more. I was scanned upside and down. Ended up saying I had a bacterial infection, unknown location, unknown cause. After lots of IV antibiotics followed by oral at home, liver enzymes still elevated but lower. A recurrence of the pain increase liver enzymes again but not as high. I've had no alcohol or Tylenol as instructed since early December, liver enzymes still high. Another MRI showed probable IPMN about 1 cm in pancreas, continued cyst in liver 4+ cm, many small gallstones.
Incidental finding of mild scarring in lungs and granuloma. To have CT scan in the summer.
My greatest concern is assist in the pancreas because it seems to be the kind that can become malignant. I would like to get these things followed up on as soon as possible, but my doctor has been on vacation so since getting the news last Friday I am still waiting as of New Year's Day for anyone to even look at the results, despite the APRN telling me she would call back on Friday.
Have heard nothing so I'm waiting
Where to begin? How to find the right specialist or surgeon? Do I need to get more opinions from other entities? I live near and go to a teaching hospital associated with a major ivy League University, Yale New Haven Health. There are other choices within reasonable driving distance.
I guess the next thing is an appointment with primary care. What do you think?

hbtb2356 | @hbtb2356 | Jan 1 8:43am

I would definitely get a second opinion. In 2004 my son was diagnosed with testicular cancer at 22 years old. The tumor was removed and oncologist at North Florida Cancer center wanted to begin chemo immediately when his tumor marker #was rising quickly. Went to Mayo Jax for 2 opinion We live in Jax Bch. 10 minutes from Mayo. The Dr at Mayo suggested taking a wait and see what happens approach . He said that if the cancer was coming back and got into his lymph nodes the treatment would be the same. WHY WOULD WE WANT TO WAIT AND SEE!!! We began treatment at North Florida cancer specialist and he has been cancer free for 10 years. Needless to say that whole experience turned me off to Mayo. My husband was diagnosed with stage IV pancreatic cancer in October and immediately began gem/Abrax treatment. We have 1st scan mid January to see progress. We are staying with cancer Specialists of North Florida for now. Mayo will be an option if this treatment is not working.

markymarkfl | @markymarkfl | Jan 1 1:39pm

@yellowdoggirl1 ,

Your first discovery of pancreas offers your best opportunity to avoid a bad outcome, so I would not accept "waiting 6 months" unless the current round of tests has __definitively__ (*) ruled out pancreatic or other cancer.

Disclaimer #1, re: ^above^ (*) -- Absence of evidence is not evidence of absence, but as reasonably "definitive" as practical.

Disclaimer #2: I have zero medical training.

---

You should definitely be getting your second opinion lined up, regardless of the results phone call you should be getting tomorrow.

If it takes a while to get into another specialist, there are some other tests your primary care doc(s) could order sooner; whether they will or not is a different question, but CA19-9 should be near the top of the list. It's not definitive or diagnostic of anything in particular, but higher than normal levels are often associated with pancreatic cancer, and probably warrant closer investigation if they correlate with your other symptoms.

If your liver enzymes have been high, repeat those tests as soon as practical. In my case, they accompanied a bile duct blockage caused by a tumor in the head of my pancreas, which preceded the onset of jaundice (yellow eyes first, then yellow skin, then itching).

Genetic testing is also helpful, but not necessarily urgent. A "germline" test like "Invitae" can identify any inherited mutations you have that might make you more susceptible to certain types of cancer. The results could be helpful in determining your risk and the appropriate level of screening, as well as possible treatment if necessary. A primary care doc could order this, but would often defer to an oncologist or genetic counselor. However, having the result sooner rather than later is always preferable to me.

Hope you get the best news possible tomorrow!

yellowdoggirl1 | @yellowdoggirl1 | Jan 1 2:15pm

In reply to @markymarkfl "@yellowdoggirl1 , Your first discovery of pancreas offers your best opportunity to avoid a bad outcome,..." + (show)

@markymarkfl
Thank you so much! Your logic sounds unrefusible and I would absolutely go the way your advising. Personally I want that thing out of there, in short.
I am sincerely hoping I do hear something tomorrow, but one never knows- if I don't hear from them I will call
Thank you again 1,000 times!
@yellodoggirl1

collenp | @collenp | Jan 2 7:52am

Thank you to everyone on this posting chain. All the information given I found extremely helpful.
I send heartfelt prayers to everyone. Stay strong, Keep your faith and never stop searching for answers. I am experiencing several abdominal issues right now. Sphincter of Oddi disfunction for 20 years. Elevated pancreatic enzymes, upper rt quadrant pain spreading to rt back. upper fundus cramping. confirmed hiatal hernia. Searching for a new PCP, my current Primary care physician, (oblivious to my symptoms), appt with a new gastroenterologist next week.
Take care everyone
Colleenp

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