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?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

stevestenberg31 | @stevestenberg31 | Jul 10, 2023
In reply to @helloitsme "Hi @taneall I am in the same boat as your husband...grade 1, stage 4. It is..." + (show)
@helloitsme

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!

Jump to this post

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.🙏

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 10, 2023
In reply to @taneall "Hi helloitsme, I'm glad you reached out. We were both very scared about the surgery. It..." + (show)
@taneall

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!!

Jump to this post

Hi @taneall

I'm so pleased that all is going well for your husband! I also appreciate how you encourage others. I'm glad to hear that your husband also found walking as the key to his recovery. I, also, walked after my surgeries and found it helpful to the recovery process.

I look forward to hearing updates as your husband continues this journey with NETs.

REPLY
helloitsme | @helloitsme | Jul 10, 2023
In reply to @taneall "Hi helloitsme, I'm glad you reached out. We were both very scared about the surgery. It..." + (show)
@taneall

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!!

Jump to this post

Hello @taneall
Thank you so much for replying and with such excellent news! You just don't know how happy your story has made me, and encouraged me to go ahead with surgery. I've read so many horror stories about the surgery, and it is so good to hear that your husband is doing just fine. I hope your husband continues to do great, and I will pray for you both. Thanks again for your advice...it will help me immensely!

REPLY
helloitsme | @helloitsme | Jul 10, 2023
In reply to @stevestenberg31 "I had 10in of SI, Gallbladder, 6 cancerous lymphnodes and a 2.5cm NET removed 4/21/23. I..." + (show)
@stevestenberg31

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.🙏

Jump to this post

Oh yay @stevestenberg31 !
Wow, this is great news to hear! I am so glad to hear of your wonderful results. You are already working out, etc., and it hasn't even been 3 months! Good luck to you in the future, and please do keep us informed of your progress. Thanks for your encouraging reply, it sure does make me feel better 🙂

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 11, 2023
In reply to @stevestenberg31 "I had 10in of SI, Gallbladder, 6 cancerous lymphnodes and a 2.5cm NET removed 4/21/23. I..." + (show)
@stevestenberg31

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.🙏

Jump to this post

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?

REPLY
1 reply
stevestenberg31 | @stevestenberg31 | Jul 12, 2023
In reply to @hopeful33250 "I appreciate you sharing about how the surgery helped you, @stevestenberg31. Your post greatly encourages others..." + (show)
@hopeful33250

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?

Jump to this post

Yes monthly Somatuline Depot until further notice. Quarterly MRI to track the 1.7cm NET in my liver. There is a NET in my stomach wall too. Has anyone had a NET removed from their stomach?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 6, 2023

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?

REPLY
1 reply
Sherry | @bluebelle | Oct 6, 2023

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

REPLY
1 reply
stevestenberg31 | @stevestenberg31 | Oct 6, 2023
In reply to @hopeful33250 "Hello @bluebelle and welcome to the NETs support group at Mayo Connect. I wanted to respond..." + (show)
@hopeful33250

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?

Jump to this post

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.💚🙏

REPLY
1 reply
phyllisden | @phyllisden | Oct 7, 2023
In reply to @bluebelle "Thank you so much for responding. I already feel better knowing that I am just 8..." + (show)
@bluebelle

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

Jump to this post

@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.

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.