← Return to Newly Diagnosed Pancreatic NET awaiting Distal Pancrectomy

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@mnewland99

Hello rginvictus,
How did the surgery go? Also, please share the facility where you are being treated. I was diagnosed with grade 2 (2.5cm tumor) in pancreas tail in September 2022. Since my dad had a very aggressive Pancan several years ago I elected to get tumor from body, tail removed; based on connectivity they have to also have to remove spleen and I had in one lymph node at pancreas without doing chemo first. I did have a lot of complications and overcame them and then started my post surgery chemo in January 2023. Advice is to walk after surgery as much as possible to get air out of lungs and abdomen. Best wishes in your journey; we are all rooting for you.

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Replies to "Hello rginvictus, How did the surgery go? Also, please share the facility where you are being..."

Hello and thank you for your comments. The surgery was very difficult, some complication's. My treatment center was Virginia Mason in Seattle. My tumor were removed pancreatic neck to tail, as well as spleen. I did have difficulty resuming any diet, aspiration of lungs and infection, surgery resection blood leakage sights, and my heart rate increased substantially and was of concern for a time. I do have low grade fistula, so long term drainage bag. My surgeon has stated if this continues they will put stint in head of pancreas. Due to above they performed a angiogram to check surgery site for bleeding which resulted in foot tingling, swelling etc, which persists. My surgical incisions are seemingly healing well, and my focus is on a new digestive system that does not like food at all. Indigestion, nausea, bloating, gas etc. Dropped 14 pounds in two weeks and just spoke to dietician who states it’s too soon to conclude enzymes or insulin related, but possible. I am curious about chemo, as my team did not recommend chemo pre or postoperative, although my tumor was 6Cm on tail, 2nd tumor 1.4 Cm neck, and now tumor is upgrade from initial one to 2, 67 index 14% and Mitosis less than 2mm. 2 other smaller tumors were noted but I am unsure if they remain or were removed. 1/7 of lymph nodes were positive, and some comment in pathology about 2 lymph nodes invaded. Don't understand the pathology and barely spoken to doctor to interpret. I wish I had gotten second opinion. Maybe good surgeon in high volume but training facility felt like a factory and I a number.

Whew, and now I did read tumor board only recommended 3 months surveillance, but again I haven’t even spoken to doctor yet about anything. I do feel better most days and gradually improving. I only hope it keeps going upward. I will consider Mayo or another facility to continue care in the future.

Thanks for the update and info, and support. Cheers!