Diagnosed with Pancreatic Cancer: Adenocarcinoma

Yes it is a roller coaster ride, and a lot to absorb. I was diagnosed in 7/2023 and had my surgery in 4/2024 after chemo and radiation. Make sure to get a second opinion and have your treatment at a center of excellence for pancreatic cancer. This site is a great for information, I check every day for updates. Best wishes.

I would recommend that you talk to several surgeons. Get a second opinion. You are lucky that you are eligible for surgery.

Dear ayeo...I think the Whipple is a life saver and worth every moment of uncertainty. I had it at 83 years of age, an over-8-hour robotic surgery (my first time in a hospital since my daughter was born in 1968). Do plan ahead--help when you go home, or go to a caring family member's home (I think rehab is a possibility if your dr prescribes). Plan easily digestible food (preferably homemade) and have it in the freezer; don't forget snacks; look for fun programs on your TV or computer for the nights you can't sleep; or do some shopping on Amazon in the middle of the night. You may sleep in the day a lot, but that leaves the long night. At home I had a stuffed lion toy my daughter gave me; we named him Courage and I looked at him a lot for just that. I suppose if you are a man, that is out of the question.
I know that's not what you asked--dealing with the overwhelming feelings at least can be ameliorated by making plans. You just hope you wake up. And you will. Then the surgery will be over and you will have the cancer removed and the information to make recovery plans. And be grateful for all the prayers on your behalf; hope someone makes you a prayer quilt or shawl that you can look at every day and be grateful for your life, family and friends. Courage, Carrie

Carrie,
when I read your reply, i couldn't hold back my sadness and tears rolled down my face. I am 61 year old, male.
i can't write further...sorry

appreciate your kind words and encouragement, Carrie

@ayeo , I was diagnosed 3.5 years ago with resectable PDAC at age 58. I did 6 months of chemo before my Whipple surgery, but the jury is out on whether that was the best course. My response to the chemo was "unimpressive" and despite a perfectly clean surgical report (pancreas margins and lymph nodes), the cancer was back 4 months after surgery.

Having the surgery at a high-volume, pancreatic cancer center of excellence is an important part of your journey. It's not just the surgeon's experience (although there is a LOT to that), but the whole post-op care team at these centers contributes to better outcomes.

Make sure they follow you closely after surgery with frequent CA19-9 testing, scans, and MRD (microscopic residual disease) testing like Signatera. Since you're not having any chemo before the surgery, you'll almost certainly have adjuvant chemo starting 6-8 weeks after the surgery, unless they put you in a vaccine trial or some other type of treatment. It's hard to answer what treatment they'll recommend until they know the outcome of your surgery, but be sure to ask what the options are beforehand.

The post-Whipple diet is a delicate period of adjustment. Some typical comfort foods are high in fat, which you won't digest very well with half your pancreas gone. Ask for an enzyme prescription (generally Creon) to take home with you after the surgery, so you don't have to endure 4-6 weeks of diarrhea while waiting for your follow-up appointment.

You got this!

The latest thinking among pancreatic cancer specialist and surgeons is that you have chemotherapy and some radiation ahead of the Whipple surgery and then chemotherapy after the surgery once you recover to pick up anything that was missed the most important thing is that you get a surgeon that specializes in Whipples There are many abdominal surgeons, but not ones that specialize you might wanna look at the medical school of Wisconsin, Dr. Evans, and Mayo‘s Rochester, Dr. Trudy

I’m sorry to hear that you’ve been diagnosed with pancreatic cancer. It’s not a cancer you want to have—not that any cancer is. You didn’t give much info about the specifics, which is OK.

I was 70 and diagnosed with pancreatic cancer in March 2023. Luckily, it was a small tumor with no apparent involvement with lymph nodes. My primary oncologist was in my home town (Minneapolis) and I got a referral to Mayo for surgery—so I’m also being followed by Mayo’s oncology department. The plan was to have 12 rounds of Folfirinox followed by radiation followed by the Whipple procedure. But, as you may find out, it’s not a journey that goes clickity clack down a straight line track. Things will change. That can be the hardest part: uncertainty.

I ended up having 8 rounds of chemo, a month off, Whipple and, after six more weeks off, 4 rounds of Folfirinox, though at an ever decreasing dose due to side effects (nausea and neuropathy). Treatment ended at the beginning of 2024 It took most of the year to get back to normal. At this point the cancer is at bay and my life is pretty much back to what it was pre-diagnosis. I have minor neuropathy and have been able to stop taking pancreatic enzymes. I do need a second surgery to repair a hernia at the incision site. It’s scheduled for April

My suggestions are similar to others: try to put a support system in place, find a center of excellence with high Whipple volume, ask questions and be ready to advocate for yourself if needed. Be aware this journey will be unpleasant and difficult. There will likely be pleasant surprises and, hopefully learning and moments of joy. Cultivate kindness whenever possible. It will probably be hard on your loved ones.

I think what was most important to me was to avoid (or let go of) fantasies and projections of pain and horror. They are just fantasies. Try to find enough joy in each day. Each day as a precious gift.

This site is a good resource. Stay away from the internet for informatikon other than those that are well known and reputable.

May I ask, what does the hernia look and feel like? I had my whipple surgery 10/29/2024 (age: 43) for Pancan adenocarcinoma head of pancreas. I am sure I am still recovering but sometimes, the upper incision (internally) can hurt when I move certain way (eg: getting up in bed using ab muscles). Thank you in advance!

The hernia is a rather large bulge around my navel on both sides of the Whipple incision and measures about 2.75" across. It first appeared within 3 or 4 months of the surgery. It is not painful. It can also be seen in my quarterly CT scans. I'd talk with both your oncologist and surgeon/team that did the Whipple. My repair (abdominal wall reconstruction) will be done by a general surgeon.

With the Whipple procedure considered a method of cure and approximately 20-25% eligible for it, my focus was on a chance for a better prognosis and the sooner the procedure, the better. First order of business was selecting an NCI designated high volume center with a Hepatobiliary department and pancreas program with a surgeon that performs over 100 Whipple surgeries a year.

The Whipple went smoothly with no post-operative complications. No drains were required and recovery was slow and steady. I set realistic expectations knowing this is one of the most difficult surgeries performed. It is not an appendectomy and good as new in a couple of days. One will need to be patient and put effort into the recovery. I had an outstanding care team that provided medications and advice in their use leading to a better treatment experience and outcome. Along with skilled surgeons on the surgical team, I have become a long-term survivor. I have no limitations/restrictions or sequela post surgery and I feel as good as I did prior to onset of illness many years ago.