Mom diagnosed with adenocarcinoma of pancreatic head. Advice??

Posted by meecherz @meecherz, May 27 9:23pm

Hi all. My mother was just diagnosed with pancreatic adenocarcinoma about a week ago. This is obviously devastating to my family but we are doing the best we can to remain in good spirits. My mom was found to have a cystic mass with an intrinsic mass within it, located in the head of her pancreas and blocking her bile duct.

She was experiencing some hallmark sx (jaundice, dark urine, change in stool color, fatigue, vague epigastric fullness). She was brought to the ER and underwent CT Abd/Pelv which found the mass. Her bilirubin was up to 14 and her AST, ALT, glucose, etc were all extremely elevated. Once we discovered her diagnosis my mom underwent an emergency ERCP for a biliary stent and biopsy. Since, she has felt better and the symptoms have mostly subsided.

Like stated above, biopsy results report adenocarcinoma. It's not certain that there is spread to lymph nodes but local LN near the pancreas were inflamed. It doesn't appear that any blood vessels or other organs are involved, although she still needs a chest CT to confirm no mets. Now we are looking into options near us in WNY..

Does anyone have experience with any pancreatic surgeons or oncologists at Roswell Park Cancer Institute in Buffalo, NY or Wilmot Cancer Institute in Rochester, NY? Those that are survivors or have a close loved one that went through pan can, what are some things you wish you knew prior to the surgery or chemo that you weren't aware of? Any other advice? It can be difficult to think straight these days and we feel like we are floating/living a different world. It's hard to believe this is real sometimes.

Both surgeons believe the tumor is resectable and suggest Whipple procedure followed by 6 months of FOLFIRINOX chemotherapy. One surgeon recommends a "pyloric preserving whipple procedure", the other traditional. We honestly liked both surgeons/sites, and feel confident in either. This makes a hard decision even harder. If anyone has prior experiences, advice, or other ideas for us to consider we'd really appreciate it. <3

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

I had chemo before surgery and then after. I now know that I have a rare genotype cell and wish I had done surgery first. It might have gotten the CA out before cells had time to travel to other organs. 6 months after Whipple I now have mets in the liver and working hard to keep that in check with various treatments. Have either surgery but get to it. Ask that they do genetic workup of the removed tumor as it can help guide follow-up treatment. Your planned chemo can be rough on some patients, but it is the best combo to use. I faired well considering. They gave me nausea meds that are also used for seasickness but they usually had the opposite effects on me so I use Zofran when needed and it works well. I also keep Gaviscon on hand for heartburn or upset stomach and that works really fast. Ask questions of this group as there are patients with different experiences and they can lend a hand at options. Think of living and do your best to stay on the positive… my daughter is 100% and keeps me in the light.

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@bb21

I had chemo before surgery and then after. I now know that I have a rare genotype cell and wish I had done surgery first. It might have gotten the CA out before cells had time to travel to other organs. 6 months after Whipple I now have mets in the liver and working hard to keep that in check with various treatments. Have either surgery but get to it. Ask that they do genetic workup of the removed tumor as it can help guide follow-up treatment. Your planned chemo can be rough on some patients, but it is the best combo to use. I faired well considering. They gave me nausea meds that are also used for seasickness but they usually had the opposite effects on me so I use Zofran when needed and it works well. I also keep Gaviscon on hand for heartburn or upset stomach and that works really fast. Ask questions of this group as there are patients with different experiences and they can lend a hand at options. Think of living and do your best to stay on the positive… my daughter is 100% and keeps me in the light.

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Thank you for your response. Did you have traditional whipple or pylorus-preserving?

Best wishes for you, stay strong and keep fighting!

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@meecherz Sorry to add to the confusion. You didn't mention the staging in the diagnosis. My wife was stage 3 locally advanced with arterial involvement considered marginally resectable. Two prominent pancan specialists at Johns Hopkins and Moffitt both recommended folfirinox before surgery. Top pancan docs consider chemo first as the current preferred treatment for a number of reasons. Very importantly, you'll be less healthy after surgery and require recuperation time to heal before starting chemo. If cancer cells are already circulating, there's a better chance of catching them by starting chemo asap. Starting chemo after surgery might delay chemo 2-3 months to allow for healing. Surgical complications might make it even longer. Unfortunately there's no set answer for every patient and you need to ask a lot of questions when you meet with the oncologists and surgeons. Ideally, the facilities you are going to take a team approach so you can get all the answers without getting referred around. Good luck and God bless.

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@meecherz

Thank you for your response. Did you have traditional whipple or pylorus-preserving?

Best wishes for you, stay strong and keep fighting!

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Traditional Whipple but my surgeon, Dr. Allen at Duke is so precise, he had me in recovery in 4 hrs rather than the usual 6-8 hrs. I had a spinal block that worked well and was walking the hallways the morning after surgery with help of a walker for 2 days. I also had an elastic waist support that really was great. I went home in 5 days rather than a week. My stomach issues started a week or later. My team helped me work thru it but I ate a little a few times a day to keep my weight steady. I told my Oncologist that I am fighting hard to give research time enough to catch up.

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