1. < Pancreatic Cancer

Surgical options for borderline resectable/locally advanced tumors

Posted by whilted @whilted, Jan 29, 2023

My mom was diagnosed with pancreatic cancer in July 2022. She was not eligible for surgery at the time due to SMA encasement, so she was recommended to start chemotherapy. She just had her 12th infusion and will have her 13th and last infusion in about two weeks. Fortunately, her CA 19-9 numbers peaked at around 480 and have since come down to 18. We are heading up to Mayo Clinic in less than a month to see Dr. Truty, but I am super anxious about the consult. I am trying to focus on the fact that her CA 19-9 numbers have come back down to normal and her past two CT scans have shown shrinkage, but there is still SMA encasement, so I'm very worried. What if they tell us she's not eligible for surgery after all planned exploratory surgery? What options do we have after?

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whilted | @whilted | Feb 20, 2023
In reply to @mayoconnectuser1 "During our visits to Mayo, the blood work was out about the time we walked across..." + (show)
@mayoconnectuser1

During our visits to Mayo, the blood work was out about the time we walked across the building for the next appointment.

Scans a bit longer, but not only are the reports quick, the imagery of the scans is also available on the portal.

Please read and study all of the reports so you can have the most meaningful discussion possible with the surgeon. If something doesn't make sense after you have studied and cross referenced terms online, make a numbered list of things you want more info on. Note - the surgeon will go into their introductory, and status mode quickly - ensure they know you have a list of questions prior to them getting to the end of their summary - so you have their full attention.

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Thank you for letting me know. I was trying to see how long it takes for results to come in. How long did it take for reports to come out?

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mayoconnectuser1 | @mayoconnectuser1 | Feb 20, 2023

Reports sometimes within an hour - two maybe - usually the actual images were available at the same time. Mayo is very efficient.

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1 reply
mayoconnectuser1 | @mayoconnectuser1 | Feb 20, 2023

BTW - make sure you set up your mom's portal as soon as they offer it - it is extremely helpful with scheduling, communicating, evaluating reports, billings, etc.

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whilted | @whilted | Feb 20, 2023
In reply to @mayoconnectuser1 "Reports sometimes within an hour - two maybe - usually the actual images were available at..." + (show)
@mayoconnectuser1

Reports sometimes within an hour - two maybe - usually the actual images were available at the same time. Mayo is very efficient.

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I will be checking then. Her lab tests have come out and I'm concerned. Her liver function tests are quite elevated, but she did just finish chemo 5 days ago. Her bilirubin is well within normal ranges, though. I'm panicking, because this is the first time I've seen her LFTs so high, but it is also the first time we've gotten her tested so quickly after chemo...

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skiball | @skiball | Feb 21, 2023
In reply to @whilted "I know. I know I should look at it (and I definitely want to), but these..." + (show)
@whilted

I know. I know I should look at it (and I definitely want to), but these past few days leading up to the appointment have been extremely difficult for me mentally and I'm afraid to see the report by myself. Maybe I'll look at her labs and pray that they're good and save the reports for tomorrow before we see Dr. Truty.

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As someone who has this same trepidation about reading my own reports, it is honestly the unknown that causes the bulk of the anxiety. Knowledge is power and will give you a chance to ask all the right questions.

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whilted | @whilted | Feb 21, 2023

I did ended up looking. Good news is that there are no signs of metastatic disease. No suspicious lymph nodes. There seems to be more arterial and vein involvement that we originally thought. The report really went into a lot of detail, more than what we’ve ever seen before. Super nervous now.

PET-MRI came out a few hours ago. Also confirmed no metastatic disease. It says “negligible FDG activity within the pancreatic adenocarcinoma,” which I think is a great thing? I probably won’t hear back from anyone here before we meet with Dr. Truty, but I am full of fear and anxiety.

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gardenlady1116 | @gardenlady1116 | Feb 21, 2023
In reply to @whilted "Most of it is due to anxiety. I’ve gone over all of her scans and labs..." + (show)
@whilted

Most of it is due to anxiety. I’ve gone over all of her scans and labs as soon as they were out in the past, but these ones feel like they’re “make it or break it,” so I’m just extra nervous and worried about what they find.

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Taking a print out with you but not reading it I think is useful. Sometimes I feel like a "deer in the headlights" and realize that I didn't get my questions answered, especially if I am feeling anxious. Prayers for your visit

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whilted | @whilted | Feb 21, 2023

Okay, so bad news is my mom is not eligible for surgery. However, Dr. Truty said he has "great news" about my mom. He said she has responded beautifully to chemo, with her CA 19-9 numbers coming from 488 to 13 and her PET-MRI showing no cancer activity in her body. He said she falls under a small group of people who have responded well to treatment. He thinks radiation and chemo pills are the perfect next step and that my mom will be in remission after. He stated that my mom will have "years" ahead of her, which is pretty surprising to hear when it comes to pancreatic cancer. Not going to lie, I am/was upset and scared about no surgery, but I do have to remember it would have been a major surgery that will probably lead to complications and hinder quality of life. I am just glad Dr. Truty kept reiterating to us that it's amazing news - that gave me the much needed comfort.

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3 replies
sprinter345 | @sprinter345 | Feb 22, 2023

That is fantastic news! God Bless!

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tiffboss | @tiffboss | Feb 22, 2023
In reply to @whilted "Okay, so bad news is my mom is not eligible for surgery. However, Dr. Truty said..." + (show)
@whilted

Okay, so bad news is my mom is not eligible for surgery. However, Dr. Truty said he has "great news" about my mom. He said she has responded beautifully to chemo, with her CA 19-9 numbers coming from 488 to 13 and her PET-MRI showing no cancer activity in her body. He said she falls under a small group of people who have responded well to treatment. He thinks radiation and chemo pills are the perfect next step and that my mom will be in remission after. He stated that my mom will have "years" ahead of her, which is pretty surprising to hear when it comes to pancreatic cancer. Not going to lie, I am/was upset and scared about no surgery, but I do have to remember it would have been a major surgery that will probably lead to complications and hinder quality of life. I am just glad Dr. Truty kept reiterating to us that it's amazing news - that gave me the much needed comfort.

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I’m so happy for you and your mom! That is wonderful news!!

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