Recovering from ileocecectomy surgery for NETs at Mayo

It all sounds very promising, and I am appreciative of your taking the time to send this update. It is encouraging to hear good news. My thoughts and best wishes are with you as you wait on the bowel movement that will signal your release and trip back home.

Thank you for the update! What a happy surprise to wKe up and see that unless invasive surgery could be done.
Mybhusband is also a patient at Mayo Phoenix. He hasn't had surgery there, though. May I ask how that experience there has been for you?

Thank-you for the update. I'm struggling to face this type of surgery. I'm getting close to seeing a NET specialist again who already has recommended surgery. I was overwhelmed by the surgeon who told me what might need to be removed.

For some reason I couldn't handle it when I heard that my gall bladder would be removed because my treatment with Lanreotide would probably cause gall stones. I'm okay with Lanreotide but I thought it was premature to talk about removing my gall bladder. Can I ask if they removed your gall bladder?

My surgeon talked about open laparotomy too. It was too much information. Maybe I would have agreed to a laparoscopic surgery!

@jerrydanhuffman Thank you. I've had those few firsts now of food (cream of wheat, eggs, soft bread with a thin layer of smooth peanut butter,) and first bowel movement yesterday a.m.. I'm trying to eat slowly, chew well, separate food from room temp drink. It's working! My stools are soft but no diarrhea yet. I'm off pain meds. Walked in the outside patio area yesterday to get fresh air and sun. Hoping to be discharged today.

@lindabees My surgeon, Dr. Wasif, has been excellent. I have a Dr. friend who's been coming with me to appts and post-op time at the hospital with me. Her term for it is "under promises, over performs." I like talking to all the staff ...nurses, techs, transport, custodial. It's surprised me, such an array of different types, not very corporate like. All good at their jobs, patient-oriented, thoughtful. Very nice rooms. When you press the call button someone always answers promptly. Is there anything in particular you're interested in? @tomrennie is also fmiliar with this facility.

@dadcue I did not have the gall bladder removed but had a lot of trepidation around having the ileocecal valve removed and how that would change my life. And some around having an open surgery as well as general anesthesia. I'm a senior and I have some risk factors for that.

They were very careful about clearing me for surgery, It didnt happen until about 10 days befirehand, Also I live at 7K ft and am still being tested/treated to see if it's okay for me to be there without O2 even without being post-op, so I needed to find a place here in Phx to heal for 4 wks. I'm divorced, so no mate to take care of me. Very stressful. Lots of scary images went through my mind as I tried to figure out how I might weather it. Sometimes I couldn't imagine I was going to subject myself to this. It took a little time to adjust to the idea and it never got really comfortable, just not horrifying.

I'm glad to hear you're close to seeing a NET doc! What are your concerns about gallbladder removal and the overall surgery, as well as not having the surgery?

@taly

I'm a retired surgical nurse. It isn't too difficult for me to dream up all kinds of things that might not go as planned. The uncomplicated cases are easy to forget. I still have vivid memories of some surgeries that didn't go as expected.

I have had a few surgeries that had mostly good outcomes but there were some surprises. I have some senior issues too.

I don't have many symptoms. My NETs are an incidental finding. If I had more symptoms maybe I would be more motivated for surgery. For now, they can do all the scans and labs they want and I will get my Lanreotide injections.

@taly
Marvelous update! It all seems to be working well for you, and I am genuinely pleased to hear from you. Keep up the good progress and work.

My initial NET presence was at ileocecal valve - had surgery - ended up having resection of colon and 15 impacted lymph nodes removed. That was 11 years ago. Had addl GI surgery 6 years ag and surgery to remove liver lesions in 2024. Multiple treatments over the years. Mayo NET oncology team amazing

Biggest issue I had with initial surgery was frequency of bowel movements and diarrhea - been a multi year issue. Keep a food diary - avoid fatty / fried foods. - I had to cook veggies - takes some adjustments but manageable

Stay strong. I never let it impact my strength trading - have found staying physical helps ( mind and body)

Good luck!

@taly
Had my gallbladder taken out during my surgery. Been on multiple treatments since then- have not seen any negative impact
Btw. I live at 8000 feet -half the year ( also a senior!)-think the clean mountain air helps!!

Good luck! Stay positive

For anyone reading this follow-up discussion, you may also be interested in this previous discussion:
- How to Prepare for Life without an Ileocecal Valve https://connect.mayoclinic.org/discussion/how-to-prepare-for-life-without-an-ileocecal-valve/

@taly, I appreciate the update post surgery. As you recover, would you mind sharing any tips you might have for someone preparing for an ileocecectomy? What do you wish you had known?