Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let’s start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

@barbchar63

I am a 75 year old female. My cancer started in 1999 where I had my left kidney removed due to cancer at the Mayo Clinic in Rochester. I did quite well for several years, but in 2008 we found a tumor in the head of my pancreas. The kidney cancer had metastasized to the pancreas. I returned to Mayo Clinic and had a Whipple Surgery where they removed the head of the pancreas, my gall bladder, and the duodenum. in 2013 another tumor was found near where they had cut off the head of my pancreas. I returned to Mayo Clinic again and they cut off another inch of my pancreas to remove the tumor. In 2018 we found another tumor in the tail of my pancreas. We waited for a year to do anything as our last daughter was planning her wedding. When we learned about a treatment to kill the cancer we decided to go for it. In May of 2019 we again returned to Mayo Clinic and saw Dr Levy. He performed a Upper Endoscopic Ultrasound and saw that I actually had two tumors instead of one. He performed an Electrical Ablation to the first tumor. I returned in June and he treated the second tumor with an Electrical Ablation. I returned again in October and he treated the second tumor and felt like he had killed all the cancer. I returned in November to Mayo Clinic and they just looked around the pancreas to see if I looked clear of cancer. In August 2020 I had another CT scan and it showed that I have another tumor near the two that I had ablated in 2019. Has anyone had Kidney cancer in the pancreas and had a complete pancreatectomy? i am desperate to talk to someone that has had similar cancer that isn't pancreatic cancer. I am thinking about having a pancreatectomy but want to talk to someone who has experienced the same thing.

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Hi @barbchar63, welcome to Mayo Clinic Connect. You've had quite the journey. While @marvinjsturing doesn't have kidney cancer that has metastacized to the pancreas, he does know the feeling of cancer returning.

You may also be interested in this discussion with Marvin, @luckyone4321 @kjrita and others
– Total Pancreatectomy https://connect.mayoclinic.org/discussion/total-pancreatectomy/

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Hi, I'm @mscarano and was diagnosed with pancreatic cancer in October 2019. However, biopsy was not conclusion. I went to Memorial Sloan Kettering and they recommend surgery to remove the tumor (stage 2?). However, after opening me up they decided is was wrapped around veins more complex then they thought and did not remove the tumor (but biopsy from surgery confirmed carcinoma. I then went on 4 months chemo and 4 weeks radiation. Current diagnosis is slight shrinkage but too risky to do surgery. More treatment does not increase chance for survival. Now in wait and see mode to see if tumor has been killed. Next scan is December.

I have decided to get a second opinion from Dr. Mark Trudy, which is currently being triaged. My one question to the group is my consistent "bowel purge events". I can't seem to go more than 10 days without the event, which is emptying my bowels totally, but not diarrhea, but sometimes a little at the end. I have increased my enzymes to 4 pills (36,000) at breakfast and lunch, 5 for dinner and 2 for snacks. I lost about 55 lbs from my normal weight but over the past few months have stabilized around 137 lbs (6 ft tall), work my way up to about 144 before having the "purge" event and then back to 137 lbs. I also salivate into a cup when having the purge event most times. All doctors say is to work on better managing enzymes, but this cycle has been going on for months.

That's ii for now.

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Hi @mscarano and welcome to the pancreatic cancer support group on Mayo Clinic Connect. I think you might also be interested in this discussion regarding stage 2 and treatment with Dr. Truty:
– Need advice: Stage 2 pancreatic cancer https://connect.mayoclinic.org/discussion/need-advice-2/

In these discussions, members, like @dakotarunner @fassbinder @kjrita @mayojoe7 @marvinjsturing @lml @susan2018 are talking about getting the right amount of enzymes for digestion and loose bowels
– How are others with pancreatic cancers managing diarrhea? https://connect.mayoclinic.org/discussion/managing-diarrhea/
– Pancreatic enzyme replacement https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/

What advice do you doctors give you about managing enzymes?

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Thanks for the info. Will check it out. Doctors just stated need to better manage my enzymes but not easy. They did recommend increasing, which I did.

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@chemobile

I was diagnosed with pancreatic cancer in late April, 2007. My diagnosis came as result of awakening one morning with jaundiced skin. My wife and daughter insisted that I see my primary physician to determine cause. He initially suspected gall bladder, but did not feel right about that and asked me to enter hospital for more extensive tests. The tests confirmed that I had pancreatic cancer. A local surgeon stated the cancer was on an artery and could not be surgically removed. He estimated the cancer to be early stage 3. What he and the local oncologist failed to tell me was that there are a select few surgeons in this country who can sometimes perform this surgery, depending upon the exact nature of the arterial location. In addition, the next morning, while still in hospital, an oncologist contacted by my primary physician told me my cancer was "the worst of the worst and there was no cure". He added that I was "as old as dirt anyway". I was 82 at the time, but I had and still have three living siblings older than me and my dad lived to 97. My wife fired him that day.
I requested to start a chemotherapy regimen and I spent many hours researching on my computer and found that Mayo clinic not only had several surgeons qualified to perform arterial resection to remove the cancer, but they even showed a diagram of it on their website. I immediately contacted their Jacksonville, Florida clinic, which is about a seven hour drive from my home in south Alabama.
I requested and was granted an appointment with one of two surgeons at that clinic who is skilled in whipple procedures involving arterial resection. After MRI, CT scan and other testing, he advised I was a candidate for surgery. He suggested I complete six chemo treatments prior to surgery. When I returned for surgery, the chemo had broken up the arterial involvement (which the surgeon and oncologist both stated was very rare) and arterial resection was not necessary, He did perform the whipple procedure, and I tested cancer free in all quarterly check-ups during the first year following surgery. At my fifth check up a small spot appeared at the site of the surgery on the pancreas, but the surgeon and oncologist do not believe it is cancer, I am scheduled for follow up MRI on the 20th of December to see what further action, if any, needs to be taken,
I am urging everyone that I come into contact with to seek a second opinion from one of the leading cancer treatment centers if a local doctor diagnoses them as having cancer; especially pancreatic. I believe I read in Mayo literature that something like 80+ percent of patients who come to them for second opinion are found to have been misdiagnosed by their local doctor. After my surgery, I learned that there are several cancer clinics who have surgeons qualified to perform arterial resection with whipple surgery if needed. What upsets me most about my cancer other than the cancer itself is that the local oncologist admitted to me after my surgery that he was aware that there were surgeons in other states qualified to perform arterial resection surgery as part of the whipple surgery but neither he nor any of the other local doctors involved in my treatment told me about them. If I had not sought a second opinion on my own, I would not be typing this message today.

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This is very interesting. Do you happen to know how to locate a surgeon who does arterial resection? Anyone?

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@mscarano

Hi, I'm @mscarano and was diagnosed with pancreatic cancer in October 2019. However, biopsy was not conclusion. I went to Memorial Sloan Kettering and they recommend surgery to remove the tumor (stage 2?). However, after opening me up they decided is was wrapped around veins more complex then they thought and did not remove the tumor (but biopsy from surgery confirmed carcinoma. I then went on 4 months chemo and 4 weeks radiation. Current diagnosis is slight shrinkage but too risky to do surgery. More treatment does not increase chance for survival. Now in wait and see mode to see if tumor has been killed. Next scan is December.

I have decided to get a second opinion from Dr. Mark Trudy, which is currently being triaged. My one question to the group is my consistent "bowel purge events". I can't seem to go more than 10 days without the event, which is emptying my bowels totally, but not diarrhea, but sometimes a little at the end. I have increased my enzymes to 4 pills (36,000) at breakfast and lunch, 5 for dinner and 2 for snacks. I lost about 55 lbs from my normal weight but over the past few months have stabilized around 137 lbs (6 ft tall), work my way up to about 144 before having the "purge" event and then back to 137 lbs. I also salivate into a cup when having the purge event most times. All doctors say is to work on better managing enzymes, but this cycle has been going on for months.

That's ii for now.

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I am curious of what Dr. Trudy has to say. Please share when you know. Thank you!

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Still waiting on a formal response. They want to do more diagnostics but have yet to discuss with any doctor. Will contact surgery unit next week as that is my point of contact.

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The Mayo Clinic in Jacksonville has two surgeons with arterial resection experience. One of them was scheduled to perform this on me in 2018 but my cancer miraculously broke up between the date of scheduling the surgery and actual surgery which was whipple procedure. I am now a 27 month survivor. Local oncologists and surgeons had told me to go home and get my affairs in order. Fortunately, I was able to locate the Mayo site explaining how the arterial resection is performed. I think they have at least one qualified surgeon at Rochester. I do not know about Phoenix.

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Have diagnostic tests scheduled in Rochester on Oct 27 and Dr. Truty appt on Oct 28 to determine best path forward. Coming from New Jersey so first time traveling out of state (flying) since COVID-19,

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Hello @mscarano,

I appreciate your posting about your appointments at Mayo Clinic. Wishing you safe travels there and back home.

I would love to hear an update about your experience at Mayo and any information you learned from your appointments. Will you post again?

Liked by ginathemom

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Date correction. Monday 10/26 & Tuesday 10/27.

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Yes, will provide update once known.

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@mscarano

Have diagnostic tests scheduled in Rochester on Oct 27 and Dr. Truty appt on Oct 28 to determine best path forward. Coming from New Jersey so first time traveling out of state (flying) since COVID-19,

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@mscarano, all the best with your trip to Mayo Rochester and to flying during these times. @maryvallis512, also recently diagnosed with pancreatic cancer, was just at Mayo and may have some thoughts and tips to share.

In the meantime, here are a few discussions that you may appreciate as you prepare for the trip later this month:
– Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
– Packing for our trip to Mayo Clinic. What to bring? https://connect.mayoclinic.org/discussion/packing/
– Tips for your first Mayo Clinic visit and tests/appt schedules https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/

You can see more in the Visiting Mayo Clinic group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

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Thanks!

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Heading for Rochester on Thursday for a PET/MRI. Six years ago after my Whipple, I had a lot of scanxiety going back for the first scan. Things got better as each successive scan showed no cancer. Now, with the recurrence of my pancreatic cancer, I again have a lot of scanxiety. I just want to know what's happening. If the tumors are not growing, there will be no treatment – just monitoring with future scans. If the tumors are growing, I will need chemo – Irinotecan & 5-FU – along with dialysis.

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