Pancreatic Cancer Group: Introduce yourself and connect with others

Vicki
May you find lots of good advice here and from other sources as well.
For what it's worth, as one diagnosed with pancreatic cancer (Adenocarcinoma) not quite one year ago, and has been and will be treated at Mayo Rochester, here are a few thoughts and personal opinions.
1. Yes, it typically takes a bit of time to be seen at Mayo Rochester (apparently longer in Mayo Clinics in Florida and Arizona). It took me approximately 3+ weeks to get an initial appointment as a self-referred patient from distant Alaska. Some other renowned cancer centers with expertise in pancreatic cancer say they can see patients somewhat sooner (1.5 - 2 weeks) but I don't really know.
2. If you consider or elect to go somewhere else I urge you only to connect with cancer centers of excellence around the country, e.g., MD Anderson, MSKK, John Hopkins, etc.
3. Of course, the sooner definitive diagnosis and treatment begins, the likelihood of a better outcome.
FYI, there are several folks in this pancreatic cancer group fighting this disease who have an extraordinary amount of awareness of pancreatic cancer and offer informed advice. The moderator for this pancreatic cancer group, Colleen Young, is a very helpful resource as well. And of course PanCAN, the Pancreatic Action Network is a good source of information as well. https://pancan.org/facing-pancreatic-cancer/
I hope this helps a bit.
Best wishes to you and your husband going forward.

I am Vicki Lynn, my husband was recently diagnosed with pancreatic cancer, March 14th. We're still going through the process of diagnosis and treatment chioces. We have been trying to find answers to his health issues since October 2023. Is this typical or should we go elsewhere for answers? Is it hard to get an appointment at the Mayo Clinic? Would it be a long process as well? Every appointment here seems to be several days appart. It seems like the cancer will become much worse before we find treatment. Could someone please advise me. Thank you

@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.

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'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!

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?

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

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!!