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New diagnosis: locally advanced pancreatic cancer
I'm new to the Mayo board, but not a Mayo patient and not in MN. This week I received a new diagnosis of locally advanced pancreatic cancer. I had hoped to do surgery, but have been definitively told it's unresectable because even though the tumor is confined to the pancreas, it's wrapped around some blood vessels. So our first line of defense is chemo. I'm having a laparoscopy next week to pin down more details and complete staging, as well as install a chemo port. Questions: Does chemo ever shrink the tumor enough to do surgery to remove it? Or is something else required, such as radiation? What's the success rate for this type of pancreatic cancer? Finally, the surgeon mentioned a Tiger Pac clinical trial to me. I've poked around the internet and have a very basic understanding of this, but I'm hesitant because it seems like using an unproven treatment approach could put me in worse shape than I'm already in. I'd be interested in hearing others' perspectives and experiences. I am reeling, as you can imagine. Two and a half weeks ago, I was teaching and back in grad school; now everything has come to a screeching halt, and I am struggling to stay positive. Thanks in advance for your replies!
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Hi!
I am sorry to hear of your diagnosis , it is very scary and overwhelming. I’ve been there! There are surgeons who do up front chemo and radiation to kill/shrink tumor so surgery can be performed. I am from NJ but did a lot of research before choosing my surgeon. I went to Mayo Clinic in Aug 2021 after I was diagnosed to consult with Dr Mark Truty. He is highly knowledgeable, kind and extremely capable. I highly recommend him and his team, I am almost one year post Whipple with NED. (No evidence of disease)
I would be happy to share with you more of my experience or answer any questions you may have. I know the diagnosis is scary, but there are resources, and there is much hope for a good outcome. God Bless!
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3 Reactions@momof3gals Thank you so much for your kind reply. You're right--this is scary and overwhelming. I noted your mention of Dr. Truty and have seen others mention him too. I'm beginning a list of resources, and he's definitely on it. Thanks again to you and the others on this board for sharing your support and ideas. I really appreciate it!
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1 ReactionHi I was diagnosed stage 4 inoperable due to the same issue as you. I apparently did have a tube spot in my liver which they can no longer see. Most cancer centers are NOT pancreatic cancer centers. I started off at the cleveland clinic and felt I got “standard care and they just went thru the motions. If u can afford the travel, and are healthy enough, contact Mayo, MD Anderson, John Hopkins or Memorial Sloan Kettering to at least keep your local oncologist up to date. You really have to do all the foot work urself. I initially went to JH for a second opinion since they were the closest to me (4 hr drive) and I still contact them with chemo or treatment questions. I contacted Dr Truty at Mayo because he sounded more aggressive with surgery and I had hoped he would say I was eligible. He confirmed ( by phone-I did not need to go there. I just sent all my scans) that I was inoperable but suggested radiation, pet scan and restaging since they could no longer see evidence in my liver. I looked through journal articles for radiation options and found Dr Crane at MSK does a MRI guided approach that sounded very successful for cases like mine. Left a message and set up a FaceTime appointment to discuss. I will be going there next month to have him perform the radiation treatment since he pioneered this approach and not many are trained to do this.
It’s frustrating that you have to constantly look into options. This site is so helpful to reach out to others. Don’t give up! Keep asking questions.
Best wishes
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10 ReactionsHi
I would really like to hear about your experience after the Whipple surgery. I also am being treated at Mayo and I have heard of Doctor Truty. The surgeon handling my case is Doctor Michael L. Kendrick, M.D.
This Doctor is the only one at Mayo Rochester MN that can do a Laproscopic Whipple surgery.
Did you have an open surgery than?
How long did the surgery take and how long were you in the hospital afterwards?
I’ve just started my first round of chemo with at least 7 more to come before surgery.
Thank you
@robee Thanks for your reply. I searched for the pancreatic cancer centers of excellence and came across the National Pancreas Foundation site, which I assume is the one you referred to. (Sorry, I can't post the link yet.) It raises a question. In the drop-down menu list of PC centers of excellence, my hospital is listed. But when you below that drop-down menu, down to the locater map and search by location, my hospital comes up only as a pancreatitis center of excellence. I can't explain why the two lists would differ, but it concerns me because, of course, I want the best pancreatic cancer care. Pancreatitis isn't my issue. I guess I'll call them tomorrow and see what they say.
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2 ReactionsAdmire your outstanding self advocacy. Pancreatic cancer patients really have to be their own advocates, doing their research, and seeking out the best care. Thank you for sharing your story.
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2 Reactions@ncteacher, you're right. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. You will be able to add URLs to your posts in a few days. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
- National Pancreas Foundation https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
You may also wish to contact the NPF to let them know of the discrepancy in their lists. This may just be a technical error on the part of the person inputting the data.
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2 ReactionsHere are links to NCI designated centers of excellence and the Precision Promise Consortium of pancreatic cancer centers that the Pancreatic Cancer Action Network has organized-
NCI DESIGNATED CANCER CENTERS
https://www.cancer.gov/research/infrastructure/cancer-centers/findPanCan.org Precision Promise Consortium
https://pancan.org/research/precision-promise/locations/https://pancan.org/research/precision-promise/locations/-
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3 ReactionsHi!
Happy to hear you have found your way to Mayo.
I had an open Whipple and my surgery was about 7-8 hours. Dr Truty did not offer me the choice of a laparoscopy. I actually had a very good recuperation in the hospital, up walking the next morning. There were a few bumps in the road during my hospital stay but the team, staff and doctors are incredible. I was in the hospital for 5 days. I stayed a week across the street from St Mary’s while my family helped with all of my needs. What regimen of chemo are you on?
It was difficult when I arrived home because I really had no appetite. I would eat what I could in very small quantities at first. I was fortunate I never had the issues with dumping syndrome or vomiting. I handled food well. Now almost one year out from surgery I am able to eat most everything without consequence. My only residual symptom is severe chemo induced neuropathy. I suggest you do everything in your power to avoid this horrible condition. Unfortunately mine does not seem to want to leave me! I am here if you have any questions along your journey. God Bless
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6 ReactionsCongratulations on your successful Whipple. I have a sense of what neuropathy is, but how does it affect you particularly? Is there anything you can take for it? And what is your protocal going forward as far as check-ups, monitoring, etc
Thank you!