Welcome to the NETs Group! Come say hi.

Followup answer:
My invasive surgery (I’m a relatively healthy 80 year old man) was for a small bowel obstruction on July 1, 2022. It was “laparotomy general surgery” (large incision). The surgeon removed a well-well-differentiated neuroendocrine tumor with a 1.2 cm greatest dimension. Tumor was also present in 1 of 6 lymph nodes. He removed 19 cm & 5 cm segments of bowel in a resection of distal jejunum.
Staging: pT2, pN1, pMx. I came home on July 10. For 6-8 days at home I had night sweats and then they stopped. I have had no other symptoms since then, no diarrhea, weight loss, eating or sleeping problems and no pain. I feel fine other than some arthritic back pain that isn’t new. Twenty-five years ago I had prostate cancer and a radical prostatectomy. I have been cancer free since then and remember as a PCa support group president advising newly diagnosed PCa men to strongly consider second opinions concerning treatment options. Fortunately I took my own advice or I might currently be undergoing unnecessary Octreotide treatments. I appreciate the NET Group postings as I have read them since my diagnosis and learned a great deal about NET. It's a very important service about this uncommon cancer.

Hello @beech18bob and welcome to Mayo Connect. I really appreciate you sharing your story about your experience with NETs. Your example of getting a second opinion is so very important. Almost every insurance will allow a patient to get a second opinion and your story shows just how important it is.

Since your surgery, have you had any problems with eating, diarrhea and/or weight loss? If you are comfortable sharing more, what type of surgery did you have? Was it invasive or laparoscopic?

Hi, in case it's of interest, the following describes my recent NET experience. Following a blockage, on July 1, 2022 I had the removal of a neuroendocrine tumor in the small bowel and one of the five nearby lymph nodes removed was found to be malignant. An Aug. 2 a Chromogranin A blood test was 102 ng/mL somewhat above the standard range. For a week after I was home from the surgery I had significant night sweats.
I had a PET scan with dotatate (Cu-64) on August 23, 2022. The radiologist noted that it showed “multiple small to borderline Cu-64 Dotatate-avid mediastinal and hilar lymph nodes, suspicious for metastatic disease.” An Aug. 25th Chromogranin A blood test was 81 ng/mL well within standard range. My oncologist offered to begin Octreotide injections. I decided to wait and to get a second opinion.

I chose to go to Dana-Farber Cancer Institute in Boston and a team there examined the original biopsy, all tests including the PET and thankfully reached a different conclusion. They saw only slight “uptake” of the radioactive marker in those lymph nodes, not the significant uptake that is usually indicative of NET cancer. Combined with my current lack of symptoms they noted that if a repeat PET scan in three months showed a similar result, I should have nothing to be concerned about.

A November 22, 2022 repeat PET scan with dotatate (Cu-64) was “similar to the prior exam, stable.” Both Drs. are very optimistic and I will have a follow up CT scan in six months. I feel fortunate and strongly recommend second opinions.

Hi Everyone, Lucy C. here, was just diagnosed with NETS this year on my birthday Aug 22, and have had my 1st major surgery on 10/20. This has not been very much fun. I go see the Oncologist soon and have a million questions for her! I'm a retired nurse so I have a good idea whats about to happen but I still need all the advice I can get as the one place I never worked was the Oncology Units. So, I'll be dropping in to read everyone's comments as I've already read some good news and advice. Wish me Luck, Later, Lucy

Hi Everyone, Lucy C. here, was just diagnosed with NETS this year on my birthday Aug 22, and have had my 1st major surgery on 10/20. This has not been very much fun. I go see the Oncologist soon and have a million questions for her! I'm a retired nurse so I have a good idea whats about to happen but I still need all the advice I can get as the one place I never worked was the Oncology Units. So, I'll be dropping in to read everyone's comments as I've already read some good news and advice. Wish me Luck, Later, Lucy

After 7 cycles of the above chemo (pills) treatment, our Cancer Care Team at Froedert Hospital in Milwaukee, has decided that I have progressed enough that surgery is back on the table to go in and knock the NET down even further. Their plan is to remove the remaining mass on the pancreas, remove the gall bladder as it has become enflamed from the repeated Chemo cycles, and remove the remaining tumors on the Liver by either surgery or insert radioactive material in the cancer tumors to kill them. Hopefully, it will be completed before the end of the year, my question to any, that have had any similar surgery, as to what to expect, in regards to recovery and lifestyle after this surgery. After this surgery, our cancer care team believes I will only have to take the monthly shot as a maintence function to keep the NET at bay hopefully for a very long time.