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.

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.

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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.

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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!

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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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cu2 | @cu2 | 6 days ago
In reply to @kellysg "@mgb20, I totally agree with @phyllisden ! It was probably 15 years before I was finally..." + (show)
@kellysg

@mgb20, I totally agree with @phyllisden ! It was probably 15 years before I was finally diagnosed in 2007 when I was 43 years old (I'm now 59). By then, the tumor had grown around several loops of my small intestine until I had complete blockage. During surgery, they removed two masses, one 7 cm and one 2 cm, as well as lymph nodes. They had to resect all the bowel in between, removing 80%.

Personally I haven't had to change my diet much, but have learned what I can and can't eat. My issues started out more about gas and bloating than diarrhea. However, as the disease has progressed, my serotonin levels have increased which causes Serotonin Syndrome. Again, I've learned what I can and can't eat. Cinnamon rolls with glaze on top are no longer in my diet (insert sad face!).

When I first came home after surgery, I ate soft foods, no spice, lots of mashed potatoes and soup. The diarrhea was definitely an issue. However, an EMT friend told me to eat solid food to get more bulk in my intestines, which made prefect sense. I was just afraid how food was going to make it's way through my digestive track with so much of it missing. It certainly helped.

I was started on Octreotide injections in 2009, and switched over to Lanreotide about a year ago. It took a bit for my body to adjust to the new meds, but overall I'm doing well. That doesn't mean I never have diarrhea, but I just try to pay attention when I'm out and about as far as knowing where restrooms are, etc. I used to carry a back pack with me with a change of clothes any time I traveled out of town. Those days are long gone!

I did 4 rounds of PRRT in 2020 due to increased activity in my tumors and markers. I have been stable since then with no growth and no new tumors!

Don't be afraid to jump in and just see what works for you. Walk, walk, walk is also a must. Remember, every one is different so you just have to do you! Don't be afraid of your new normal, embrace it as a gift because you're still here! I've been Stage 4 with low grade tumors for 15 years now so there's always hope!
Never give up, and advocate for YOU!

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Thank you!!! Right I’m four years strong in this now. I go to Georgia Cancer Specialist in Atlanta, but I live in Conyers, Georgia which it is about 45-50 miles away. I go in for my treatment every 28 days (Lanreotide injection) and CT Scan every 6 months too take a look at where we are and I just continue on to the next phase. So here I am just weighing my options trying to avoid a blockage in the long run. I have the diarrhea associated with abdominal pain, painful gas and sometimes nausea and throwing up. But I just deal with it I feel it could be worse. I do know that by watching what I eat and drink it doesn’t be that bad. This is really an experience of my lifetime and I can’t ever get it back but I can always fine something to be GRATEFUL for y’all 😇

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kellysg | @kellysg | 4 days ago

Thanks for your update. It made me realize I haven't even looked at this thread since my post in 2023, and a lot has happened since then!

I just finished up my second series of 4 PRRT treatments. In the beginning they didn't recommend more than one round of 4, but it's been proven more can be given as long as the patient does well. I won't do follow-up scans until the end of June to let it work it's magic, but I'm optimistic.

After the first round in 2020, all my tumors were stable, and stayed that way until early-2024. I started experiencing chronic diarrhea, and went from 120 # to 99# in a matter of months. Scans showed the cancer had spread to my ovaries. They did not want to remove them as there would be no significant advantage. Then July scans should it had spread to my lower spine, which explained why I was having so much back pain. It was at that time my doctor recommended proceeding with another round of PRRT.

To help with the diarrhea, I am on 3X daily shots of fast acting Octreotide. I also take 2 Loperamide and 2 Lomotil 4 times a day. I can adjust that depending on how my day is going, and sometimes I reduce those. I've been able to maintain my weight at 100#, and strive to gain more!

Keep in mind I was originally diagnosed in 2007 and have made a pretty good run at this cancer thing! I plan on being around for many more years, and just deal with the speed bumps as they come along. That's all we can do, and keeping a positive attitude is key!

I live in Kansas, and my oncologist is at KU Cancer Center, about 2 hours from my home. Not super handy, but it's my best option. Keep doing you, and always advocate for yourself!!! If you have any questions, don't hesitate to ask. I'm an open book!

Best regards!!!

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dbamos1945 | @dbamos1945 | 4 days ago

@kellysc: You are an inspiration to me! I agree with your positive outlook and acceptance of this NET experience. I do wish we had multiplied the cancer speciality hospitals throughout our nation. So far we are able to make the 2+ hr drive to City of Hope, but at 79 and 89 we don’t know how much longer we will be able to drive that distance for treatment by NET specialists. I am grateful for their excellent facility.
I just finished my 4 Lutathera PRRT treatment and had good response.
Life is a challenge, but only we can make the best of it by being kind, generous of yourselves, and remain positive in outlook.
Be happy! Best to you… Bette

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