NETs: Scheduled for small intestine resection: What to expect?

@mbg20, just wanted to post a message for you to come back to after your surgery. I hope you are comfortable and recovering well. I look forward to your update when you're able.

My husband has much the same type of NET as you. It is grade 1 but stage 4 since it spread to a lymph node in his neck. He has multiple lymph node involvment in his mesentary and a similar sized tumor on his ileum. So he will have the resection on Good Friday and hopefully recover quickly on Easter Sunday! Glad to say goodbye to some of this NET tumor trouble and hoping for a continued improved existence. He hasn’t experienced any blockage but has lived with chronic constipation for a long time. (Who knows?) We hope your surgery went well on the 30th and that you are feeling better now.

Healing thoughts to emmepoppins’ husband and mbg20 following their NET small bowel resection surgeries! Since my NET primary shares similarities I am interested in learning about your surgeries, tips &tricks to share and general healing techniques. My best to you both for quick healing.

After about ten years of increasing abdominal bloating, pain, and vomiting, Mayo Jacksonville diagnosed carcinoids in my small intestine and in abdominal area. They removed 12" of my small intestine and as many escaped tumors as they could, leaving me labeled "metastatic, stage 3." My recovery was amazing. No more pain or vomiting. Within two weeks I was eating anything I wanted. I did deal with three major intestinal blockages over the next two years, but those cleared up and I had very little discomfort. I hope your surgery goes as well.

I’m home now after surgery and 8 nights in hospital, mostly in the ICU. It was really tough. I have additional problems with blood pressure and atrial fibrillation which posed additional issues. Dr used an open incision and removed about a yard of small intestine, a baseball size secondary tumor in mesentary, 2 cm primary in small intestine, gall bladder and appendix. Some tumors left because they were too close around the aorta. I’m awaiting the biopsy results and will meet with Drs in 2 days. Glad now to be at home, going for small walks and eating small, low fiber, hi soluble foods, and waiting for digestive system to get back into balance. I’m taking a second lanreotide does in 3 days and hoping for fewer side effects than with first shot. Progress is generally upward with occasional setbacks. It’s helped to have bought a portable, raised toilet which puts less stress on that 8” incision. Also got a shower chair so didn’t have to stand in shower. And the other thing is we’re stocked up on chicken thighs and breasts to make mild chicken noodle soup eaten over mashed potatoes (potatoes have good nutrients and you can’t eat many other vegetables.) This meal is easy to make, digest and defrost when it’s mealtime. Ive also learned not to drop pain meds too early - less pain means more willingness to walk and walking really helps immensely to relieve bowel pain.

So good to hear from you, @mbg20. It sounds like your recovery has been very steady. That is a testament to the good work you have done with your diet and exercise plan. I'm glad to hear that you are able to control the pain with the use of the pain meds.

I see you have an appointment in two days. Will this be a follow up appointment with the surgeon?

mpg20, Wow, it sounds like you’ve been through the wringer. And now doing so well! It speaks to your strength and determination to take care of yourself and take control of your recovery.
I’ve had two surgeries since 2018 and the hardest by far was the second one when they removed 11” of my large intestine and appendix (I’d already lost 10” of my small intestine). I developed plural effusions so had breathing problems and looked like the Pillsbury Dough Boy. Once that resolved I dropped to 104 lbs - I’m only 5’ tall but it just made me look old. Anyway, the oncologist was on me to eat more protein. It helped the weight and energy level. So good to see you’re doing that, and figured out what works for you.
Best wishes as you continue to recover - it certainly sounds like you’re on the right road.

I did meet with the surgeon. The good news is the biopsy showed slow growth of remaining tumors. Im continuing with lanreotide injections to also help slow growth. I still am having difficulty eating but that seems to be more or less normal. A CT scan in 3 months should help determine if the remaining tumors remain indolent. I’m also getting a needle biopsy of my right thyroid which lit up in the DOTENTATE scan.

@mbg20

The slow growth sounds very encouraging, I'm sure you are relieved about that. Yes, the difficulty eating is quite normal. In time, you will be able to eat more.

When will you be having the needle biopsy of your thyroid? Have blood tests indicated any thyroid problems?

I just visited Mayo Rochester. Was diagnosed in April 2023 with Neuroendocrine cancer of the small bowel, carcinoid syndrome mainly flushing with metastasis to liver and bones.
I completed PRRT on March of this year and tumors are stable.
I was told that the small bowel tumor is causing a blockage and surgery was recommended along with liver ablation.
Has anyone out there had this surgery combination and if so how did it turn out?