Pancreatic Cancer Group: Introduce yourself and connect with others

In the US, the Mayo Clinic in Rochester, Minnesota.

My name is Marissa and was diagnosed with metastatic malignant pancreatic cancer stage III. I went to ED with tolerable pain in the left abdomen-radiating to the back. Before this pain, I did not have any symptoms. They did a CT scan and found the CA. It was a big surprise for me and my family Currently, I am on chemotherapy with no plans for surgery because the tumor was clinging near my aorta. In the last CT, the tumor decreased in size. I'm hoping for a great result next CT. I have not experienced any neuropathy but occasional light nauseous feelings after chemotherapy.

Don’t let them delay the Whipple. I have no clue what my CA 19.9 value was neither did my endo or Whipple surgen they never mentioned anything about CA 19.9 all Eric asked was when do you want the Whipple.”
I said “Monday” that was a Friday..he smiled and said ok but the next Monday a week later, I told him “Eric Kortz” I’d be there!!
He is retired now but worked with Surg-One based in Swedish Hospital Englewood Co. The only thing Eric was concerned about was my internal A Orta as to clearance from my spine??
The Whipple is a 7 hour operation and when done manually like Eric did a very tiring physical procedure. . Not for me “hey” I was sleeping like a baby.
My pancreatic cancer was discovered in my impala da Vader valve.. They defined it as stage one that was a Johns Hopkins biopsy.
My surgeon, Eric, and my Endo surgeon. Frederick Lewis said I was very lucky caught very early because of the symptoms that I had, which were extremely rare. The only symptoms I ever told anybody about was I feel like I’m being eaten by red ants everywhere do something about it or I’m gonna have to blow my head off!! In the pre-Whipple days which would be 1930 and earlier the only choice of person would have had would be to take a shotgun or a pistol to his head, and get rid of the symptoms.
I have no clue where you live, but I do know that there is a surgeon at Surg - One who trained under Eric Kortz would know how to do the Whipple properly. I would suggest him be your surgeon and get it done ASAP. Godspeed!!

silver182,

Please consider that everyone is different - and, many surgeons believe chemo before and after Whipple is appropriate.

Your binary statement may not be the correct course of action.

I found out today that I will start chemo again on April 1st. I had laparoscopic surgery to see if I qualify for Whipple surgery and they found tiny cancerous spots on the lining of my abdomen. They didn’t show up on my CT scan. The biopsy was tested to see if I could have immunotherapy. My cancer marker was 1% so it was denied. It was disappointing but I have to stay positive

Hi @garden4me,

I can understand your disappointment at not being able to have surgery to remove this cancer. Please remember that it is always you right to get a second opinion. Mayo Clinic would be a good place for a second opinion. They have great cancer specialists. Here is a link with appointment information for their locations in Minnesota, Florida and Arizona, http://mayocl.in/1mtmR63.

If for any reason, you cannot be seen at Mayo, I would urge you to seek a second opinion at a Pancreatic Center of Excellence in your area. Here is a link to the National Pancreatic Cancer Foundation, https://www.npcf.us/about-pancreatic-cancer/. There is a phone number at the bottom of the screen. They might be able to refer you to a specialist in your area.

How are you feeling? Are you able to eat and maintain your weight?

@silver182 Thanks for taking the time to reply and answer some of my questions. Much appreciated.
Glad you've had a good ride since your diagnosis and Whipple. My rodeo is ongoing for now.
Onward.

I'm sorry about your situation. Teresa is right; you can always seek a second or even third opinion. Your situation sounds somewhat similar to mine in that I can't have surgery either, for two reasons. First, a Whipple can remove the organs, assuming there is no blood vessel involvement that could be dangerous. I have that blood vessel involvement, so that was the first reason I was declared inoperable. Second, during my staging surgery (laparoscopic) and Power Port installation, the surgeon saw several flat lesions elsewhere away from the pancreas. Like yours, they weren't on the CT scan. In fact, they've never appeared on any of my scans. They're not 3D enough to show up. The Whipple can't effectively remove all of those lesions, so that's where chemo comes in. I've now been on chemo for nearly a year, and we've knocked the cancer activity way down, and I feel good (except for a couple of days after chemo, which is always tiring). I wish you the best, and i hope chemo goes well Monday!

I have a great appetite because I haven’t had chemo since February 7th. Thanks for the local PanCAN specialists idea.

Hi ncteacher. I have blood vessel involvement also. I was told that when I get the cancerous spot in remission that I can be rechecked for Whipple surgery. That is my wish. I wish you well on your cancer journey and a pray for all cancer Patients daily