PNETs: What comes first? Surgery or try to shrink tumor with chemo?

Posted by laree @laree, Jan 12 10:19pm

Pancreatic nets on the tail moved to liver. It might be nonfuntional as it was found by accident and was shocking is an understatement.

Do the drs normally perform surgery first or try to shrink the tumors with meds first?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Take a deep breath. There are lots of treatments for this cancer. I also have a Grade 3 with a Ki67 of 38%. I did the CAPTEM oral chemotherapy combination. I had very few side effects except the dose was lowered because of low platelets. I had shrinkage after 3 months and then no change after 3 more months. So then they will give you a break and stop the chemo. I have now been off the chemo for 6 months with cancer stable. I do do Octrotide shots as I have functional Small bowel net with stage 4 Mets to bone and liver. I have felt fine throughout and continue with normal activity. Your husband will do great!

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@laree

We just met up with the oncologist. Actually the same Dr. that had treated a family member for melanoma. We received more info but also have more questions. Seeing Net specialist next month.
It is Pnets stage 4 of the liver. He is not recommending surgery. It is stage 3 with KI 67 25% so a little above the slow growing one. He said don't have the liver therapy with the beads at their facility yet, that would be at the specialists. He is recommending the Chemo tablets, forgot the name. My husband is nervous about the side effects of taking the drug. We also would like to know if the drug is working can you reduce the amount or stay on it forever?
We will see what the specialists say. I feel horrible for my husband. He is such an active type. It is nonfunctional nets. I don't know how we ca n't be anxious with worry daily????

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I believe the chemo tablets your husband is taking might be CAP/TEM a pill version of chemo. If they are, everyone tolerates CAP/TEM differently. My wife only had a few side effects in the first cycle, after that for 8 more cycles. It helped her in our case with significant reduction in the size of the tumors which then allowed for surgery to get the primary tumor on the pancreas.

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@vanhauen

Take a deep breath. There are lots of treatments for this cancer. I also have a Grade 3 with a Ki67 of 38%. I did the CAPTEM oral chemotherapy combination. I had very few side effects except the dose was lowered because of low platelets. I had shrinkage after 3 months and then no change after 3 more months. So then they will give you a break and stop the chemo. I have now been off the chemo for 6 months with cancer stable. I do do Octrotide shots as I have functional Small bowel net with stage 4 Mets to bone and liver. I have felt fine throughout and continue with normal activity. Your husband will do great!

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Thank you, always like positive feedback. It is great you are doing well. The oncologist said since my husband has small nets along with probably a 3inch pnet on the liver and about a 3inch size on the pancreas they wouldn't recommend surgery since there are also small ones located on the liver.
We will see what the specialist has to say.

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@laree

Thank you, always like positive feedback. It is great you are doing well. The oncologist said since my husband has small nets along with probably a 3inch pnet on the liver and about a 3inch size on the pancreas they wouldn't recommend surgery since there are also small ones located on the liver.
We will see what the specialist has to say.

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I assume you are seeing a NET Specialist, which is a must with NET, as many Oncology doctors have not experienced many cases of it as it is very rare. If you have other questions, the forum and us are here to help however we can. You got this!

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@kim1965

I assume you are seeing a NET Specialist, which is a must with NET, as many Oncology doctors have not experienced many cases of it as it is very rare. If you have other questions, the forum and us are here to help however we can. You got this!

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Yes, a net specialist for the next appointment. I think we might feel better at the cancer center for this. Thank you!!

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I’m sorry you’re going through this but glad you’ll be seeing a net specialist. Many net surgeons will operate when general oncology surgeons won’t. Has there been a gallium or copper scan done yet? That is net specific and will tell you if there are other unseen mets. If not, I would definitely seek a second surgical consult with a net surgeon.

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@lindabees

I’m sorry you’re going through this but glad you’ll be seeing a net specialist. Many net surgeons will operate when general oncology surgeons won’t. Has there been a gallium or copper scan done yet? That is net specific and will tell you if there are other unseen mets. If not, I would definitely seek a second surgical consult with a net surgeon.

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Yes. My husband has the gallium scan coming up soon that the oncologist has set up then we will see the oncologist again after words. Meanwhile we have the net specialist appt before the gallium test. I hope that wont make a difference too much and he can still give us a good opinion. My husband is nervous about that test because it will be more detailed. The oncologist and the net specialist can see all the results, the records are connected now through the system. I was told they know each other.
Just hoping for the best outome and with mimimal side effects as to what they want to do.
Thank you for the suggestion!

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@lindabees

I’m sorry you’re going through this but glad you’ll be seeing a net specialist. Many net surgeons will operate when general oncology surgeons won’t. Has there been a gallium or copper scan done yet? That is net specific and will tell you if there are other unseen mets. If not, I would definitely seek a second surgical consult with a net surgeon.

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I found it interesting tbe oncologist is ordering capecitabine for after the gallium scan. Or it might be ready now. But we hadn't seen the net specialist yet. I have noticed some people take CAPTEM.

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@laree

Yes. My husband has the gallium scan coming up soon that the oncologist has set up then we will see the oncologist again after words. Meanwhile we have the net specialist appt before the gallium test. I hope that wont make a difference too much and he can still give us a good opinion. My husband is nervous about that test because it will be more detailed. The oncologist and the net specialist can see all the results, the records are connected now through the system. I was told they know each other.
Just hoping for the best outome and with mimimal side effects as to what they want to do.
Thank you for the suggestion!

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Sounds like you’re on the right track! The specialist probably will hold off on a treatment plan until they get the gallium scan results.
I totally relate to your husbands trepidation about the scan. When they were first approved we resisted for the same reason. But in the end it’s best to know one way or the other. I pray you get excellent results!

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