1. < Neuroendocrine Tumors (NETs)

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

Posted by mbg20 @mbg20, Mar 22, 2023

I was diagnosed with NET 2 weeks ago. I had symptoms of obstructed bowel which led to a CT scan showing a tumor in mesentery, followed by a PET/CT DOTATATE scan, then a CT with contrast. Also had a colonoscopy. The results showed a 3 cm mass in the small intestine and an adjacent 5 cm mass in mesentery, both withe DOTATATE uptake. Uptake in the retroperitoneal lymph nodes Oncologist says it’s Grade 4. No information on the Stage. Things are moving pretty fast bc of results showing obstruction in small intestine which could turn into a crisis. I am seeing doctors at Johns Hopkins. They started me on Lanreotide March 22 and I am scheduled for surgery next week on March 30 to remove the tumors and relieve the obstruction. This involves a small bowel resection.
I am quite worried about all this. Especially because it tuned out that this condition predates 2015 so although it is slow growing, it’s been growing for a long time and is now quite big. A CT scan in 2015 showed a 3 cm mesenteric tumor but no one noticed. Plus my brother died of NET in 1999.
I would appreciate some feedback on experiences with small bowel resection. The surgeon is telling me that there’s roughly a 10% chance I’ll have permanent diarrhea and also if he finds more extensive small bowel involvement that he may have to remove so much bowel that I might need to be feed via a port. Has anyone had experience with this?

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Sherry | @bluebelle | Oct 7, 2023
In reply to @phyllisden "@bluebell, So sorry to hear you’re having struggles with your diet post surgery, but I certainly..." + (show)
@phyllisden

@bluebell, So sorry to hear you’re having struggles with your diet post surgery, but I certainly understand. When I had my small intestine resected in March 2018, I had few problems. But then in July 2019 when I lost 11” of my large intestine/colon, I had a lot of problems. My weight dropped to 104, and even though I’m only 5’ tall, that was way too much. And I couldn’t keep anything in me. So I did some research and came up with a diet on the Cleveland Clinic website that helped me so much, I shared it with my oncology team. I also started walking nightly around my patio and sidewalk to build up my strength.
Here’s a website you might check out: https://my.clevelandclinic.org/health/articles/15637-gastrointestinal-soft-diet-overview
I hope you will find something soon to help you start feeling better. Now I pretty well eat what I want but still avoid spicy, creamy, or high fiber foods. But I do keep plenty of Imodium on hand if I need it. This disease can be fairly manageable, it’s just a matter of figuring out what that means for you.
My best to you.

Jump to this post

Thank you so much…it means the world to talk to folks that truly understand. I really appreciate you reaching out to me. I will definitely check out the link that you sent. I have a nutritionist on the team that is also going to reach out to help.
I am so glad you’re doing well and pray you continue to do so! Take care and have a great weekend!

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Sherry | @bluebelle | Oct 8, 2023
In reply to @stevestenberg31 "Yes what Teresa said is helpful. Hang in there🙏. I too had similar symptoms and lost..." + (show)
@stevestenberg31

Yes what Teresa said is helpful. Hang in there🙏. I too had similar symptoms and lost 37lbs. My dietician recommend putting cheese on foods to help gain weight. I also eat organic blueberries with low sugar Greek yogurt and maybe a little granola daily if not twice a day. Slow walks on a treadmill or around my neighborhood until I could do more. Cooked vegetables were easier for me to process then salads b/c I was getting too much fiber from raw vegetables. My surgery was 4/21 and I also had all that removed plus my gallbladder. I'm on Somatulin depot and after the blockage was gone my side effects aren't that bad after the first few days of monthly shot. No new growth and next MRI first week of November as well. Keep a journal of your food and exercise so you can repeat what works. I use a free app called "MyFitnessPal". I've gained 20lbs back since May. I am considered Stage 4
I guess b/c I still have a stomach and liver NETs we know of. Baby steps and you will feel better. You will live and people on this group will be thinking positive thoughts and prayers for you.💚🙏

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Thank you so much! This has been a very helpful site and I appreciate your words of wisdom! I used to be a runner and then after years, turned to being a daily Walker BUT I am so weak now I can barely walk a mile. I like your advice about starting with small walks and building up. I know this is what I need to do but I’m so unmotivated right now I guess bc I feel so bad. Baby steps is right…one day at a time. This is a new and unexpected journey and I know I need to give myself more Grace. Thanks again!! Happy Fall!

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Sherry | @bluebelle | Oct 8, 2023

My situation sounds a little similar in that they marked my tumor from a CT scan back in 2020 and have been watching a nodule on my lung but no one ever did anything about it until now. My tumor was 5 cm that he removed and another that was smaller in the mesentery and another in the lymph node there (along with 10 more lymph nodes with cancer cells). I had a large bowel resection in 2020 (10”) and then about 14” this time which included part of the small bowel, ileum, and large bowel in order to connect it to. I have not ever heard of a port (except to receive chemo?) but I have talked to my surgeon about a possible colostomy in the future if my diarrhea and weight loss continue. It sounds like you are in wonderful hands with JH. Try not to worry bc they will take good care of you! It IS scary and my worst part is just the anxiety of not knowing what’s next. I am going to Levine Cancer Institute in Charlotte, NC and they have a team working with me including a counselor, nutritionist, and will call in a psychiatrist if my meds need changing up. Do you have a team working with you? A counselor that can help with the anxiety/worry? Mine is very helpful and is meeting with me every 2 weeks until my PET scan and treatments begin. I will keep you in my thoughts and prayers…please keep us updated if you can:) ❤️

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 8, 2023
In reply to @phyllisden "@bluebell, So sorry to hear you’re having struggles with your diet post surgery, but I certainly..." + (show)
@phyllisden

@bluebell, So sorry to hear you’re having struggles with your diet post surgery, but I certainly understand. When I had my small intestine resected in March 2018, I had few problems. But then in July 2019 when I lost 11” of my large intestine/colon, I had a lot of problems. My weight dropped to 104, and even though I’m only 5’ tall, that was way too much. And I couldn’t keep anything in me. So I did some research and came up with a diet on the Cleveland Clinic website that helped me so much, I shared it with my oncology team. I also started walking nightly around my patio and sidewalk to build up my strength.
Here’s a website you might check out: https://my.clevelandclinic.org/health/articles/15637-gastrointestinal-soft-diet-overview
I hope you will find something soon to help you start feeling better. Now I pretty well eat what I want but still avoid spicy, creamy, or high fiber foods. But I do keep plenty of Imodium on hand if I need it. This disease can be fairly manageable, it’s just a matter of figuring out what that means for you.
My best to you.

Jump to this post

Hello @phyllisden

I appreciate the link about the gastrointestinal soft food diet. What an excellent resource for a post-surgery eating plan. Thanks for sharing that!

REPLY
sandy23 | @sandy23 | Oct 12, 2023

Hi Sylvia, my hubs NETS started with a small bowl obstruction, ended up at the ER (2019) and in surgery the same day. Unfortunately for you, you have time to ponder and worry about what will or won't happen and the end result. My hubs went in thinking his ulcer was acting up and it turned into a 10 day hospital stay. So he didn't have any time to do anything. I, however, was the worrier as most of us caregivers are.
He had about a 6 to 8" section (maybe longer) of his small bowl removed along with some lymph nodes. His surgery went well. They did it laproscopic so you don't even see the scar (went thru the belly button). Diarrhea is a possible thing, of which my husband does have bouts with, however the drs believe it's from the cancer itself not the surgery. I wouldn't worry too much about that. You may get it due to the cancer as he has or you may not. And it's easily controlled by an anti-diarrhea OTC med. Or the dr can advise if it's too much and affecting other things. Just try not to think about that. And also, keep in mind the drs have to tell you everthing that could possible happen if things go sideways. My suggestion is research the surgery and possible problems. Remember, again disclosing all possibikities of issues and/or problems. Write questions down.... one... laproscopic? Also, find out how familiar he/ she is with NETS. You want an Oncologist AND a SURGICAL ONCOLIGIST who is VERY familiar with NETS. NETS are not common and while a general surgeon can operate on a small bowl obstruction you want one who also is an Oncologist and preferable one who is familiar with NETS. Also, don't be afraid to get a 2nd opinion. Most drs don't have an issue with that.
Do your research, write down your questions, ask, get a 2nd opinion if necessary and then once satisfied... do something to keep your mind off the surgery. Or you'll worry yourself crazy. Get together with friends, family and LAUGH......I have faith it will go well and this will be behind you soon. Good luck to you and I hope the above helped.

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