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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Colleen Young, Connect Director | @colleenyoung | Feb 11, 2023
In reply to @whilted "Wow, you and my mom are really on the same boat! May I ask why your..." + (show)
@whilted

Wow, you and my mom are really on the same boat! May I ask why your oncologist only wants you to do 8 chemo sessions? Typically people go for 12. Have you contacted Dr. Truty at Mayo? We were also introduced to the Nanoknife and will pursue it if that’s our only option. There is a surgeon in Kentucky that speaks very highly of it, so it seems promising.

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@whilted, what treatment plan has been offered for your mom? How is she doing? How are you doing?

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1 reply
whilted | @whilted | Feb 12, 2023
In reply to @colleenyoung "@whilted, what treatment plan has been offered for your mom? How is she doing? How are..." + (show)
@colleenyoung

@whilted, what treatment plan has been offered for your mom? How is she doing? How are you doing?

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@colleenyoung, we have not gone to Mayo yet - her flight is next Saturday! She will have a week of appointments/consultations, along with a laparoscopy performed by Dr. Truty. Tomorrow, she will have her extra chemo session (as recommended by the Mayo team), but besides her usual frustration with chemo, she is doing very well! She even put on a couple of pounds and has been cooking almost every day. Me...I am very anxious, about both the chemo session and her consultations at Mayo. I'm praying her CA 19-9 numbers are lower tomorrow and that they'll continue to drop with that extra chemo session. I am EXTRA worried about what Dr. Truty will say after he does all his examinations.

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2 replies
mayoconnectuser1 | @mayoconnectuser1 | Feb 12, 2023

While a bit in the weeds, we found the Marriott Towneplace Suites to be a very nice location for a week or so at a time. Does not connect with Mayo main campus, but is only a nice walking block away. Underground parking, low rates, nice complimentary (but presdicatable breakfast), and a caring attitude,

https://www.marriott.com/search/hotelQuickView.mi?propertyId=RSTTM&brandCode=TS&marshaCode=RSTTM

Mayo has pay as you go concierge parking, but we found it easier and less expensive to drop the patient in the drive through (usually a very busy place), and the driver pop the car directly across the street to the pay as you go parking garage.

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1 reply
gardenlady1116 | @gardenlady1116 | Feb 12, 2023
In reply to @whilted "@colleenyoung, we have not gone to Mayo yet - her flight is next Saturday! She will..." + (show)
@whilted

@colleenyoung, we have not gone to Mayo yet - her flight is next Saturday! She will have a week of appointments/consultations, along with a laparoscopy performed by Dr. Truty. Tomorrow, she will have her extra chemo session (as recommended by the Mayo team), but besides her usual frustration with chemo, she is doing very well! She even put on a couple of pounds and has been cooking almost every day. Me...I am very anxious, about both the chemo session and her consultations at Mayo. I'm praying her CA 19-9 numbers are lower tomorrow and that they'll continue to drop with that extra chemo session. I am EXTRA worried about what Dr. Truty will say after he does all his examinations.

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It seems most helpful to me to take it one day at a time, too many possibilities when I try and go out into the future, provokes all kinds of worrying.

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1 reply
whilted | @whilted | Feb 12, 2023
In reply to @mayoconnectuser1 "While a bit in the weeds, we found the Marriott Towneplace Suites to be a very..." + (show)
@mayoconnectuser1

While a bit in the weeds, we found the Marriott Towneplace Suites to be a very nice location for a week or so at a time. Does not connect with Mayo main campus, but is only a nice walking block away. Underground parking, low rates, nice complimentary (but presdicatable breakfast), and a caring attitude,

https://www.marriott.com/search/hotelQuickView.mi?propertyId=RSTTM&brandCode=TS&marshaCode=RSTTM

Mayo has pay as you go concierge parking, but we found it easier and less expensive to drop the patient in the drive through (usually a very busy place), and the driver pop the car directly across the street to the pay as you go parking garage.

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That hotel looks super nice. I ended up booking an Airbnb that's a 6 min walk to the main Mayo campus. Updated, modern, and cheap as well!

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whilted | @whilted | Feb 12, 2023
In reply to @gardenlady1116 "It seems most helpful to me to take it one day at a time, too many..." + (show)
@gardenlady1116

It seems most helpful to me to take it one day at a time, too many possibilities when I try and go out into the future, provokes all kinds of worrying.

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Yup, I've been trying super hard to focus on the present and take things one step at a time. The anxiety kicks up as appointments get closer. I definitely need to find a therapist for myself, though. My mental health is not at its best, and I definitely need to stay positive to be the best caregiver for my mom!

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asingh90 | @asingh90 | Feb 12, 2023
In reply to @whilted "@colleenyoung, we have not gone to Mayo yet - her flight is next Saturday! She will..." + (show)
@whilted

@colleenyoung, we have not gone to Mayo yet - her flight is next Saturday! She will have a week of appointments/consultations, along with a laparoscopy performed by Dr. Truty. Tomorrow, she will have her extra chemo session (as recommended by the Mayo team), but besides her usual frustration with chemo, she is doing very well! She even put on a couple of pounds and has been cooking almost every day. Me...I am very anxious, about both the chemo session and her consultations at Mayo. I'm praying her CA 19-9 numbers are lower tomorrow and that they'll continue to drop with that extra chemo session. I am EXTRA worried about what Dr. Truty will say after he does all his examinations.

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Hello, I wish you good luck at Mayo Clinic! Hopefully, the endoscopy will show good news that the surgery can take place. In the event that the surgery cannot happen, Sloan Kettering has been working a lot with using high dose radiation on tumors such as your Mom's that are too close to major arteries to operate on- and the great news is that there results so far are showing that survival rates using this level of radiation therapy are very similar to those that get the surgery! If Mayo tells you that surgery is still not possible, I would definitely suggest consulting with Sloan Kettering in New York about this high dose radiation therapy option. I wish you the best of luck!

Please see this link: https://www.mskcc.org/news/high-dose-radiation-offers-hope-people-inoperable-pancreatic

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3 replies
gardenlady1116 | @gardenlady1116 | Feb 13, 2023
In reply to @asingh90 "Hello, I wish you good luck at Mayo Clinic! Hopefully, the endoscopy will show good news..." + (show)
@asingh90

Hello, I wish you good luck at Mayo Clinic! Hopefully, the endoscopy will show good news that the surgery can take place. In the event that the surgery cannot happen, Sloan Kettering has been working a lot with using high dose radiation on tumors such as your Mom's that are too close to major arteries to operate on- and the great news is that there results so far are showing that survival rates using this level of radiation therapy are very similar to those that get the surgery! If Mayo tells you that surgery is still not possible, I would definitely suggest consulting with Sloan Kettering in New York about this high dose radiation therapy option. I wish you the best of luck!

Please see this link: https://www.mskcc.org/news/high-dose-radiation-offers-hope-people-inoperable-pancreatic

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Thanks for the link. I am currently following up with MSKCC and have been very happy with the care at the institution. I go back March 28th and will see how the blood vessels have come along. I know there are many twists and turns from reading about patient experiences, but I am feeling good about my CA 19-9 going from 1750 before treatment to 200 after the 5th. I go back for CT and follow up with the surgeon to see if I have made progress with the involvement of the superior mesenteric vein.

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whilted | @whilted | Feb 13, 2023
In reply to @asingh90 "Hello, I wish you good luck at Mayo Clinic! Hopefully, the endoscopy will show good news..." + (show)
@asingh90

Hello, I wish you good luck at Mayo Clinic! Hopefully, the endoscopy will show good news that the surgery can take place. In the event that the surgery cannot happen, Sloan Kettering has been working a lot with using high dose radiation on tumors such as your Mom's that are too close to major arteries to operate on- and the great news is that there results so far are showing that survival rates using this level of radiation therapy are very similar to those that get the surgery! If Mayo tells you that surgery is still not possible, I would definitely suggest consulting with Sloan Kettering in New York about this high dose radiation therapy option. I wish you the best of luck!

Please see this link: https://www.mskcc.org/news/high-dose-radiation-offers-hope-people-inoperable-pancreatic

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Thanks for this link - I didn't know about this approach at all. I may bring it up with Dr. Truty when we see him.

Good news today! My mom went for her extra chemo session and her CA 19-9 numbers have come down to 13! So happy that it's still decreasing.

REPLY
mamarina | @mamarina | Feb 14, 2023
In reply to @asingh90 "Hello, I wish you good luck at Mayo Clinic! Hopefully, the endoscopy will show good news..." + (show)
@asingh90

Hello, I wish you good luck at Mayo Clinic! Hopefully, the endoscopy will show good news that the surgery can take place. In the event that the surgery cannot happen, Sloan Kettering has been working a lot with using high dose radiation on tumors such as your Mom's that are too close to major arteries to operate on- and the great news is that there results so far are showing that survival rates using this level of radiation therapy are very similar to those that get the surgery! If Mayo tells you that surgery is still not possible, I would definitely suggest consulting with Sloan Kettering in New York about this high dose radiation therapy option. I wish you the best of luck!

Please see this link: https://www.mskcc.org/news/high-dose-radiation-offers-hope-people-inoperable-pancreatic

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I also have an un resectable mass as its involved with my veins. I had a 2nd opinion with johns hopkins
Im under care at MCI in Miami they are an affiliate of MSK in NY. I had the High dose MRI guided radiation with Dr Michael Chuong in Sept. Im do for scans again next week
as normal. Im very nervous
I will update

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