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

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

@ahtaylor

For those of you with liver metastasis, what was your primary NET? How were the liver mets diagnosed (MRI, CT, other?). Did anyone go through a time of "indeterminate liver lesions" to ultimately find out it was metastasis? My primary NETs were/are insulinomas and have been watching multiple "indeterminate liver lesions" for some time now. Have an upcoming Mayo appointment to do some more evaluation. I have had multiple CTs and MRIs - none are definitive of the lesions being mets. CTs indicate more suspicion than MRI which docs feel is a positive. Just curious about other experiences with the diagnostic process. Thanks, in advance, for sharing any thoughts/experiences.

Jump to this post

@ahtaylor
My wife’s primary tumor was a mass on the pancreas tail. Our initial findings of NET was noticed from a MRI from a different issue. Numerous, too many to count lesions were noticed on liver. Biopsy was done on primary tumor on pancreas. Followed by CT, MRI, PET scan, blood draws. Diagnosed as NET, started Lanreotide and Chemo (Cap/Tem) immediately, and completed 9 cycles. Reduced mass on pancreas and lesions on liver, our cancer team did surgery 3/1, removed tail of pancreas, removed spleen, gall bladder, debulk as many lesions as possible. They believe we have made it a mtn. Issue going forward, we have other options still to use to fight this. Hope this helps someone.

REPLY
@kim1965

@ahtaylor
My wife’s primary tumor was a mass on the pancreas tail. Our initial findings of NET was noticed from a MRI from a different issue. Numerous, too many to count lesions were noticed on liver. Biopsy was done on primary tumor on pancreas. Followed by CT, MRI, PET scan, blood draws. Diagnosed as NET, started Lanreotide and Chemo (Cap/Tem) immediately, and completed 9 cycles. Reduced mass on pancreas and lesions on liver, our cancer team did surgery 3/1, removed tail of pancreas, removed spleen, gall bladder, debulk as many lesions as possible. They believe we have made it a mtn. Issue going forward, we have other options still to use to fight this. Hope this helps someone.

Jump to this post

Thanks!

REPLY
@ahtaylor

For those of you with liver metastasis, what was your primary NET? How were the liver mets diagnosed (MRI, CT, other?). Did anyone go through a time of "indeterminate liver lesions" to ultimately find out it was metastasis? My primary NETs were/are insulinomas and have been watching multiple "indeterminate liver lesions" for some time now. Have an upcoming Mayo appointment to do some more evaluation. I have had multiple CTs and MRIs - none are definitive of the lesions being mets. CTs indicate more suspicion than MRI which docs feel is a positive. Just curious about other experiences with the diagnostic process. Thanks, in advance, for sharing any thoughts/experiences.

Jump to this post

Hi @ahtaylor,

This is a great question! I had my first surgery for NETs in the duodenal bulb in 2003, the last surgery (my third) was in 2016. All surgeries were in the same location. I have had MRIs to follow up on pancreatic cysts and for several years it was noted that there were lesion(s) on the liver. All else seemingly being OK, a biopsy was never done on the liver.

During my MRI last year, the lesions on the liver were no longer visible. Don't know what to make of it, but I think I'll be happy with the results and not be too concerned. (Liver panel blood work shows that all is normal.)

Have you had a liver panel done recently?

REPLY

My liver panels have all been normal. For the most part, the liver lesions have been stable. There are multiple and some have different radiology characteristics than others. Most are not concerning for metastasis based on radiology findings but a couple of areas are being monitored more closely. Due to the indeterminate nature of the lesions, I am having a Calcium Stimulation test at my next visit that will help determine if the liver lesions are functional insulinomas. Thanks for sharing your information!

REPLY
@ahtaylor

My liver panels have all been normal. For the most part, the liver lesions have been stable. There are multiple and some have different radiology characteristics than others. Most are not concerning for metastasis based on radiology findings but a couple of areas are being monitored more closely. Due to the indeterminate nature of the lesions, I am having a Calcium Stimulation test at my next visit that will help determine if the liver lesions are functional insulinomas. Thanks for sharing your information!

Jump to this post

Hi @ahtaylor

Good to hear that your liver panels have been normal, that seems to be a good sign. I can understand, however, your concern about the different radiology characteristics. When my liver lesions were noted on the MRIs, they remained unchanged for several years until they eventually disappeared.

I hope that the calcium stimulation test can put to rest the uncertainty of these lesions. Is this test scheduled yet?

REPLY

Yes, the test is schedule in the next few weeks. Thanks for your information!

REPLY

I have multiple liver lessions too that have different characteristics, I’m not comfortable about it especially that last showed more even though the size of the largest remained the same. Do You mind to share description of Yours? My bigger ones are felt to be hemangiomas but not smaller ones. The smaller don’t uptake contrast in delayed phase.

REPLY

@margaret12 Depending on the type of imaging (MRI, CT), my liver lesions have been described as both hypo and hyperattenuating and hypo and hyper-enhancing. Radiology is not my specialty, however, my understanding is the metastatic lesions are generally in the "hyper" realm. However, I also know it is not that simple. I think every case is individual. While I have some lesions that could be metastatic appearing on CT, they don't look like that on MRI. It can be a frustrating process, however, I have full confidence in my care team at Mayo. They are diligent and persistent in trying to figure out exactly what the lesions are.
I have had the same experience as you. Different characteristics, some new lesions appearing and stability in the ones they have been monitoring.
Where was your original tumor?
Thanks for your post!

REPLY
@ahtaylor

@margaret12 Depending on the type of imaging (MRI, CT), my liver lesions have been described as both hypo and hyperattenuating and hypo and hyper-enhancing. Radiology is not my specialty, however, my understanding is the metastatic lesions are generally in the "hyper" realm. However, I also know it is not that simple. I think every case is individual. While I have some lesions that could be metastatic appearing on CT, they don't look like that on MRI. It can be a frustrating process, however, I have full confidence in my care team at Mayo. They are diligent and persistent in trying to figure out exactly what the lesions are.
I have had the same experience as you. Different characteristics, some new lesions appearing and stability in the ones they have been monitoring.
Where was your original tumor?
Thanks for your post!

Jump to this post

No original tumor located but I have elevated glucagon in 200’s and 5HIAA on and off. They don’t feel the values are high enough. Are You fatigued? Are they thinking of biopsy?

REPLY
@margaret12

No original tumor located but I have elevated glucagon in 200’s and 5HIAA on and off. They don’t feel the values are high enough. Are You fatigued? Are they thinking of biopsy?

Jump to this post

Fortunately, no fatigue. Hypoglycemia worsened but that could also be tumor growth in the pancreas. They have not discussed biopsy due to the indeterminate nature of the lesions on imaging as well as the invasiveness of a liver biopsy. The test I am having in April is a Calcium Stimulation test. The calcium gluconate will stimulate insulinomas to produce insulin. They will perform the stimulation across both the liver and the pancreas. If there is an increase in insulin levels, the area stimulated is positive for a tumor. The pancreatic tumors are not clearly visible on imaging so this test is how they know I have additional tumors in the pancreas. They will do the same to determine if the lesions in the liver are functional insulinomas. Hope this make sense. . .
They have done the test twice before and so far the liver has remained negative for tumors. It has been a couple of years since the last test. There has been an increase in the frequency and severity of hypoglycemia episodes as well as some changes in the imaging - thus the reason for the repeat test coming up.

REPLY
Please sign in or register to post a reply.