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Surgical options for borderline resectable/locally advanced tumors
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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When I had my second opinion with johns hopkins. They would have attempted surgery but could not promise they would be successful and stats werent good. But would not do surgery if i got the radiation because it causes scar tissue..
Mind you the chemo was shrinking the mass but it was so rough on me gemzar/abraxane
Let us know what moffet suggests. Its such a horrid delemna. I will update after my tests 🙏🏻
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2 Reactionshttps://www.mskcc.org/news/high-dose-radiation-offers-hope-people-inoperable-pancreatic
Thank you good to know. All the best on your upcoming scans. Let us know how it goes. I'll update on Moffitt ✔️
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2 ReactionsMy mom's journey at Mayo starts tomorrow! Blood work at 10:50 am CST, followed by a CT scan and PET/MRI scan. Not going to look at the results of her scans until we meet with Dr. Truty on Tuesday...it'll be hard and I'll be anxious, but it's for the best.
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1 Reactionwhilted,
Why would you not review her scans and lab results? They will be available within a hour (blood work), and a few hours (scans).
To be a competent advocate you must understand them well enough to be able to understand what the surgeon is saying. I strongly recommend reviewing the, studying them and cross referencing online.
Please don't wait until you meet with the surgeon, otherwise it will be confusing.
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1 ReactionLikely your reports will be posted to a patient portal shortly after they are reviewed by the radiologist. I highly recommend reading the report before you see the surgeon and make sure that you have the report with you when you go to see the surgeon. It might not be possible to get the report, but I highly recommend that you try. If someone is with you, they can make some notes on the report. I took notes when I had a virtual visit with the surgeon. It was very helpful.
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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2 ReactionsI 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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1 ReactionYou never know, they may be good news. I think you will benefit from looking at the report as soon as it is available, and making a list of questions to ask.
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1 ReactionDuring 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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