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pete1962 (@pete1962)

Recurrence in Liver after Whipple

Neuroendocrine Tumors (NETs) | Last Active: Apr 15 5:46pm | Replies (48)

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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

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Replies to "Hi, Pete. I've had a similar situation. I had a robotic surgery for my PNET in..."

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