1. < Neuroendocrine Tumors (NETs)

Recurrence in Liver after Whipple

Posted by pete1962 @pete1962, Feb 19, 2023

I had a Whipple procedure in March 2019 with no traces of NEC left behind.
In Feb 2023 my scan confirmed recurrence in Liver, largest tumor about 2.5cm.
Did anyone have a successful treatment of a similar case? What did help you? I have an oncologist appointment scheduled for Feb 27 to discuss treatment options and would really appreciate any input so that I am better prepared.
Thanks, Pete

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 14, 2023
In reply to @ahtaylor "Just following up. I had the calcium stimulation test on Tuesday. The liver was positive for..." + (show)
@ahtaylor

Just following up. I had the calcium stimulation test on Tuesday. The liver was positive for insulinoma metastasis. The plan for now is to continue octreotide injections monthly and monitor by imaging and develop the plan from there. I feel very good about the plan and I am blessed to be at Mayo with an incredible endocrinologist.

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@ahtaylor

I would agree that you are blessed to be at Mayo and have such good follow-up. I am sorry to hear that the liver was positive for insulinoma metastasis, though.

How often will you follow up with imaging?

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ahtaylor | @ahtaylor | Apr 14, 2023

At minimum every 6 months, but also as needed if symptoms dictate. My endocrinologist is very accessible for communicating issues/concerns as well as responsive to my communications. For now, octreotide is doing a good job at symptom control 🙂

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 14, 2023
In reply to @ahtaylor "At minimum every 6 months, but also as needed if symptoms dictate. My endocrinologist is very..." + (show)
@ahtaylor

At minimum every 6 months, but also as needed if symptoms dictate. My endocrinologist is very accessible for communicating issues/concerns as well as responsive to my communications. For now, octreotide is doing a good job at symptom control 🙂

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Symptom control is a good thing. @ahtaylor.

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augustine777 | @augustine777 | Apr 14, 2023
In reply to @ahtaylor "I have had 11 tumors removed from pancreas in 2 surgeries. They were grade 2 tumors...." + (show)
@ahtaylor

I have had 11 tumors removed from pancreas in 2 surgeries. They were grade 2 tumors. Ki-67 was 2.3 and 4.68.
Surgeries were in 2015 and 2017 and developed metastasis to liver in 2023. I would recommend being your own advocate and asking what they will do to monitor for metastasis going forward. I have been monitored, on average, every 6 months since 2017 @ Mayo and closely monitored for metastasis and I was always informed of the monitoring plan and findings. Please let me know if I can help further. Best wishes!

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Thank you so much for your reply. I had an appointment yesterday, and they are planning to do scans every 3 to 4 months for the next five years. That seems like a lot, but I’m also pretty worried about metastasis to my liver. My oncologist was trying to decide whether to do any adjuvant therapy to try to reduce the chance of reoccurrence. He decided against it. based on so many experiences on here, I kind of feel like we’re just watching and waiting for it to show up in my liver.

He reassured me that he has had many patients who never had reoccurrence after my surgery. He said I probably have about a 40% chance of more cancer in my future. That seems a bit high to not be doing anything about it.

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1 reply
ahtaylor | @ahtaylor | Apr 14, 2023
In reply to @augustine777 "Thank you so much for your reply. I had an appointment yesterday, and they are planning..." + (show)
@augustine777

Thank you so much for your reply. I had an appointment yesterday, and they are planning to do scans every 3 to 4 months for the next five years. That seems like a lot, but I’m also pretty worried about metastasis to my liver. My oncologist was trying to decide whether to do any adjuvant therapy to try to reduce the chance of reoccurrence. He decided against it. based on so many experiences on here, I kind of feel like we’re just watching and waiting for it to show up in my liver.

He reassured me that he has had many patients who never had reoccurrence after my surgery. He said I probably have about a 40% chance of more cancer in my future. That seems a bit high to not be doing anything about it.

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Your plan for scans every 3-4 months sounds like they are trying to stay on top of it. I completely understand your concern about metastasis. My NET is slow growing so every 6 months has been sufficient. Every case is different but remember at anytime you can advocate for a change in plan if you don’t think what is being done is enough. Advocate for what you feel like you need and go from there. Best wishes!

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kim1965 | @kim1965 | Apr 14, 2023
In reply to @hopeful33250 "Hello @kim1965 How is your wife doing? Would love to have an update." + (show)
@hopeful33250

Hello @kim1965

How is your wife doing? Would love to have an update.

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@hopeful33250
Thanks for asking. Kim continues to progress well. She is walking 30-40 minutes a day 2 days on then rest 1 day and repeat. Our challenge still is that she was a diabetic before the surgery, so after removing the tail of pancreas as you know presents chalk to find the new normal. She has the G-7 monitor which helps greatly. It is constantly going high and low, but lately is starting to level off a bit. We meet our cancer care team end of June to review new CT and MRI’s, to determine after 1st 3 months after surgery and hopefully becomes just a mtn. Issue going forward.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 14, 2023
In reply to @kim1965 "@hopeful33250 Thanks for asking. Kim continues to progress well. She is walking 30-40 minutes a day..." + (show)
@kim1965

@hopeful33250
Thanks for asking. Kim continues to progress well. She is walking 30-40 minutes a day 2 days on then rest 1 day and repeat. Our challenge still is that she was a diabetic before the surgery, so after removing the tail of pancreas as you know presents chalk to find the new normal. She has the G-7 monitor which helps greatly. It is constantly going high and low, but lately is starting to level off a bit. We meet our cancer care team end of June to review new CT and MRI’s, to determine after 1st 3 months after surgery and hopefully becomes just a mtn. Issue going forward.

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Thanks for the update, @kim1965. I'm glad she has the energy to walk on a somewhat regular basis. It is good to hear that her blood sugar in leveling as well.

How is her eating? Is she managing, OK?

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1 reply
kim1965 | @kim1965 | Apr 15, 2023
In reply to @hopeful33250 "Thanks for the update, @kim1965. I'm glad she has the energy to walk on a somewhat..." + (show)
@hopeful33250

Thanks for the update, @kim1965. I'm glad she has the energy to walk on a somewhat regular basis. It is good to hear that her blood sugar in leveling as well.

How is her eating? Is she managing, OK?

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@hopeful33250
Eating is almost to normal, some items are causing her levels to jump, so we try to avoid them. So a little bit of trial and error.

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