Recurrence in Liver after Whipple

Hi Linda

How did your scan go?

Lots has happened since my last post. I had further scans and Octotide scan (together with blood values & 24h urine analysis) confirmed multiple tumors on my liver but no spread anywhere else; carcinoid, suspected functional, well defined, stage 2, 25mm size of the biggest one, currently no option to surgically remove due to locations and number of lesions. I do not have any symptoms at all besides normal digestive issues connected with Whipple, feel well and energetic.

I must say that I am treated in the UK. They use a multi-discipline team and refer cases to NET specialists with whom I am in direct contact as well.

I questioned whether I should not have a DOTA pet scan to identify if it has spread any into other body parts. The answer was that it does not really matter for now since it shows at one part the treatment recommendation would currently not change.

The PNET specialist recommended Lanreotide injections to identify growth rate and monitor how tumor responds. Scans planned every 3-4 months and the specialist said that test will go on for at least 6 months even if next scan show growth of tumor. He did not recommend PRRT or Immuno at this point due to side effects.

What stage have you been when it was recommended that you have PRRT and what side effects do you experience from treatment?

Best regards, Peter

Thanks Colleen

@pete1962
Thanks for responding. I don’t remember your first post, if your diagnosis includes NET in both liver and Pancreas. In our case, with liver lesions too numerous to address, the combined chemo (pills)CAP/TEM was suggested to hit it hard for 3 months and retest. The results were great that 50% reduction in both areas in the tumor and lesions on liver. It was decided to continue until the chemo stopped being effective. We went 9 cycles, then with almost 80% reduction surgery was done, and they got good results. My suggestion to you is to ask your cancer team why not fight it hard now with chemo/Lanreotide and knock it down while it is only grade 2? Let me know if you have any other questions, we all are on the same team.

@ahtaylor

I was noticing that you were going to have a calcium stimulation test. Has that been done yet? Were the results helpful in understanding the nature of the liver lesions?

I have not had the calcium stimulation test yet. It is coming up soon. However, I have had it done in the past due to the indeterminate liver lesions. Fortunately, in the past the stimulation across the liver has been negative for functional insulinomas. It has been 2 years since I last had it done. There have been some imaging changes and increase in hypoglycemia frequency and severity since that time so it is being repeated. I can provide more information after the visit. Thanks for checking!

I know this is a bit of an older thread, but for those who had metastasis to the liver, what was the grade of your tumors? I just had a distal pancreatectomy and splenectomy. They also found 3 of 10 lymph nodes that were NETs. Because my tumors are grade 2 (with an 8 and 10 KI-67) both my surgical oncologist and my medical oncologist think that I probably won’t have any other metastasis. After reading so many of these posts about PNETs going to the liver, I am becoming a bit less optimistic than they are. I have an appointment today where they will decide whether to do adjuvant therapy or just watch and wait. Thinking about what questions I might want to ask today.

Ask what are the options are and pro/cons for each choice. If they are not NET specialists, possibly get a second opinion from one? Just my thoughts.

Hello @kim1965

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

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.

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!