Recurrence in Liver after Whipple

Hi Pete, kindly advise if you have yearly followed up scans after the whipple surgery thou there was no traces of tumor left. When was your last scan before Feb 2013 scan?

Hi Jessie59, i had one scan in Dec 20 and one in Dec 22. The one in Dec 20 was free of any traces.
I missed my 2021 scan due to covid and me working abroad. I guess I was just optimistic since all the results all the time where really positive and I was not aware of how common recurrence is.

Hi, Pete. I've had a similar situation. I had a robotic surgery for my PNET in Feb. of 21, and the surgeon said it would never come back. I had scans at 6 months and then 3 months. I missed scans for 6 months because my husband had heart surgery. When I got my next scan I had 30 to 40 tumors in my liver. Luckily I had gotten into Mayo Clinic by then. That process took 6 months, but I am getting treatment now. Be sure you have a NET specialist. I am in a trial using PRRT. I've had 2 infusions and my first follow CT is Monday. I'm hoping it's working! Best, Linda

@pete1962, I'd like to add to the helpful post from @lu7. (I wish you both successful appointments on Monday.)

While @joannc63 doesn't have NETs (I don't think), you might be interested in connecting with her in this discussion that she recently started:
- Pancreatic Cancer Recurrence after Whipple https://connect.mayoclinic.org/discussion/pancreatic-cancer-recurrence-after-whipple/

Here are some discussions in the NETS support group that may have relevant info for you as you prepare for your appointment:
- NETs: Anyone has Liver debulking for liver metastasis? https://connect.mayoclinic.org/discussion/net-liver-debulking/
- Neuroendocrine Lung stage 4B with metastasis in liver https://connect.mayoclinic.org/discussion/neuroendocrine-lung-station-4b/

@colleenyoung I wanted to give an update on my CT scan after 2 PRRT infusions. Three of my larger tumors in the liver have shrunk a good bit, and several smaller tumors show decreased blood supply which hopefully leads to their degradation. The plan is to continue the 6 infusion course as long as my lab work remains good. My oncologist was quite pleased. Obviously I am pleased as well.

@lu7, I appreciate getting your hopeful update. This sounds great. How are you managing the infusions?Any tips for others starting PRRT?

The infusions have been pretty easy. Mild waves of nausea at times, but easily managed and pass pretty quickly. It's a longish process, and I do get pretty tired. The radiation management post procedure is a hassle. Mild hair loss. Fatigue for a few days. I feel very fortunate.

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.

my primary NET was small intestine with secondary tumor in mesentery. Liver mets were detected 3 years later by MRI and biopsy. have had MRIs every 6 months since 2018, and dotatate PET scans twice which really lit up the liver mets. I had ablation of 9 liver tumors to reduce tumor load in 2019, but in 2022, increases in size and number of liver mets have resulted in adding Everolimus (Afinitor) to the monthly Lanreotide injections. I have just started that drug-with fatigue and mouth sores early on.

Thanks for sharing! Much appreciated!