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

Hi @taneall
I am in the same boat as your husband...grade 1, stage 4. It is in my small intestine, lymph nodes, liver and possibly heart (still waiting on MRI to determine what it is in my heart.) I am scared to death of having the surgery, but your story has encouraged me to go ahead with the surgery, that it may not be that bad. How is your husband doing now? I'm hoping to hear some good news from you because this is a long, hard and scary road to travel. Sometimes I think it may be harder on the caregiver than the actual patient!
Anyway, I'm sending positive energy your way and hoping that you and your husband are both doing well!

Hi helloitsme,
I'm glad you reached out. We were both very scared about the surgery. It was the best course of treatment for a slow growing cancer like NET. My husband has recovered very well, back to his normal energy and exercise regime. He had his first CT scan 3 months after surgery, no tumors found and will have another one 3 months later. He is on a surveillance plan right now. No treatment. It could be 3 years, 5 years 20 years or maybe never the cancer will return. Nobody knows. All his pathology came back with clean margins. They took out 15 nodes and only one had the cancer. There were an additional 5 small tumors found on the outside of his small intestine that prompted 2 feet to be removed. The surgeon felt the entire small intestine during the surgery. As a precaution the gallbladder and appendix were removed too. No cancer in those.
We had a specialist in NET cancer do the surgery. At the first appt he told us to read up as much as we could about the cancer, good advise. We found the NET research foundation that has online podcasts to listen to that explain the tumors. This helped us a lot. If you Google search use Google scholar to see research papers on the cancer. We were very fortunate the primary source was found in the small intestine. Makes a huge difference. His was found during an emergency hernia repair. We were lucky to have gone through that first to find it. We put our faith in God to navigate the process. We had to pray for patience as sometimes it seemed like forever to get referrals and tests done. Praise God my husband is doing well. I Pray that you get the answers you need and your surgery goes well. It will be hard at first. My husband spent a week in the hospital. Walking is the key to recovery, he walked from the first day after surgery in the hospital with his 2 poles of hook ups. He got an infection a month after surgery from a random internal stitch that popped out, antibiotics took care of that.
One day at a time! You can do this!!

Hi helloitsme,
I'm glad you reached out. We were both very scared about the surgery. It was the best course of treatment for a slow growing cancer like NET. My husband has recovered very well, back to his normal energy and exercise regime. He had his first CT scan 3 months after surgery, no tumors found and will have another one 3 months later. He is on a surveillance plan right now. No treatment. It could be 3 years, 5 years 20 years or maybe never the cancer will return. Nobody knows. All his pathology came back with clean margins. They took out 15 nodes and only one had the cancer. There were an additional 5 small tumors found on the outside of his small intestine that prompted 2 feet to be removed. The surgeon felt the entire small intestine during the surgery. As a precaution the gallbladder and appendix were removed too. No cancer in those.
We had a specialist in NET cancer do the surgery. At the first appt he told us to read up as much as we could about the cancer, good advise. We found the NET research foundation that has online podcasts to listen to that explain the tumors. This helped us a lot. If you Google search use Google scholar to see research papers on the cancer. We were very fortunate the primary source was found in the small intestine. Makes a huge difference. His was found during an emergency hernia repair. We were lucky to have gone through that first to find it. We put our faith in God to navigate the process. We had to pray for patience as sometimes it seemed like forever to get referrals and tests done. Praise God my husband is doing well. I Pray that you get the answers you need and your surgery goes well. It will be hard at first. My husband spent a week in the hospital. Walking is the key to recovery, he walked from the first day after surgery in the hospital with his 2 poles of hook ups. He got an infection a month after surgery from a random internal stitch that popped out, antibiotics took care of that.
One day at a time! You can do this!!

I had 10in of SI, Gallbladder, 6 cancerous lymphnodes and a 2.5cm NET removed 4/21/23. I was diagnosed with NETs in January and started Somatuline monthly injections 2/15. The SINET was blocking my SI causing pain, bloating etc.. I feel much better now and im eating a larger diet and portions. Expect not to lift anything for 6weeks. Im working out, playing tennis, biking etc again now. Good luck. You will heal.🙏

I had 10in of SI, Gallbladder, 6 cancerous lymphnodes and a 2.5cm NET removed 4/21/23. I was diagnosed with NETs in January and started Somatuline monthly injections 2/15. The SINET was blocking my SI causing pain, bloating etc.. I feel much better now and im eating a larger diet and portions. Expect not to lift anything for 6weeks. Im working out, playing tennis, biking etc again now. Good luck. You will heal.🙏

I appreciate you sharing about how the surgery helped you, @stevestenberg31. Your post greatly encourages others who are facing a similar experience.

Are you continuing the monthly injections?

Hello @bluebelle and welcome to the NETs support group at Mayo Connect. I wanted to respond to your post in this discussion group so that you could meet others, such as @stevestenberg31 and @taneall, who also have had experience with surgery for NETs in the small intestine.

Here is your post that was in another NETs discussion group:

"I have stage 3 NET cancer and had a large tumor in my small intestine removed, a small one near that are, and one in a lymph node near there as well. I also had 10 additional lymph nodes removed with cancer cells. My PET scan is the 1st week of November with a follow up/ discussion of treatment. In the meantime I continue to lose weight, feel awful, chronic diarrhea, malnutrition…etc. How do I get through this healing stage and even begin my treatments? I’m really worried bc I’m so weak and I know that with treatment my weakness and fatigue may get worse. I just want to feel better and live somewhat of a normal life during all this. I’m pretty much tied to the house and near the bathroom…any advice would be greatly appreciated!!!"

I am sorry to hear that you are having so many problems post-surgery. I'm wondering how long ago you had the surgery. Most of us who have had intestinal tract surgery as a result of NETs need several months before beginning to feel better.

After intestinal tract surgery, it is important to follow an eating plan that includes several light meals a day without much fat or high fiber. Most of us have found that a diet of broiled or baked fish or chicken is a good place to get protein. It will take some time to find the foods that will not trigger symptoms.

I have had three surgeries for NETs in the duodenal bulb and I recall having friends drop off casseroles (that were cream based) as well as wonderful salads. They were perfectly wonderful foods, but unfortunately not the best from someone who had intestinal tract surgery.

Do not hesitate to contact your doctor's office for dietary suggestions and for medication that might help with the diarrhea. It is important to be able to gain your strength back with the right kind of foods.

What type of foods are you eating?

Thank you so much for responding. I already feel better knowing that I am just 8 weeks out and that it could take months as you said to feel better. I am trying to eat protein but I am sure I’m not getting enough. I bought some Vegan protein powder that I am going to try this weekend bc I can’t handle animal protein drinks. I have been on Pepto, Imodium, prescription Lomotil, and now I am on Colestipol 2 x a day for the bile acid diarrhea. I ate a very bland low residue diet for a few weeks and have been trying to add other foods with fiber and some greens etc. I hate electrolyte drinks but I found one today that I actually like and can tolerate but I hate the thought of drinking so much sugar.
After I meet with my oncologist on Nov 14th, she will discuss a treatment plan for me. Do the infusions generally help to make you feel better or tend to add to the symptoms already present?
Thank you so many ch for reaching out!
Sherry