Pancreatic Cancer Group: Introduce yourself and connect with others

@silver182 I face more big decisions in 4 weeks. I'm scheduled for a Whipple next month (two previous surgery dates in January and February postponed due due elevated CA 19.9 levels). If you don't mind sharing, I have a couple of questions for you.
1. At the time of your Whipple, what was the type, location and Stage of your cancer?
2. If you can recall, what was your CA 19.9 value just prior to surgery?
3. Where did you get your Whipple?
Thanks in advance. It's refreshing to hear a bit of your history and your excellent outcome.
Good on ya.

My name is Julius Butu. I am a Nigerian and live in Abuja
My younger brother (58) had been diagnosed with pancreas tumor.
Where can I receive the best medical attention in US or Europe?

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?