NETS and Nutrition

Posted by fraaseo @fraaseo, Apr 5 9:24pm

In reading all of the NETS cases the one thing I find that’s missing is nutritional counseling as part of the treatment/healing plan. Has anyone been referred to or consulted with a nutritionist? I was on a low fiber diet for three months following my second surgery. Dr said to gradually start adding foods back and see how I did with them. I am on an unrestricted diet and generally eat what I want. I’ve lost 26 lbs and have not gained my weight back in 2 years. Dr has me eating 4 small meals a day with snacks in between. I drink water constantly, all day long to stay hydrated. Does anyone take probiotics to help with digestive issues? The best snack I’ve found is low fat vanilla Greek yogurt with granola added to it; tastes great & stays with me. Interested in others diets.

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

Colleen Young, Connect Director | @colleenyoung | 2 days ago

I found this helpful article about nutrition and NETs
- Eating Right with Neuroendocrine Tumors https://netrf.org/old-for-patients/living-with-nets/nutrition/

@fraaseo, have you considered getting a referral from your NETs specialist for a consult with an oncology dietitian?

This blog post by a Mayo Clinic registered dietitian might help:
- How a Registered Dietitian Nutritionist (RDN) Can Help During and After Cancer Treatment https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-can-a-registered-dietitian-nutritionist-help-during-and-after-cancer-treatment/

fraaseo | @fraaseo | Apr 6 3:51pm

Sad, Medicare needs to update what they pay for as NETS is becoming very common.

Nancy VanHauen | @vanhauen | Apr 6 11:38am

Unfortunately I have found out that Medicare only approves medical nutrition counseling for Diabetes and kidney disease. I have NET and severe fatty liver disease. I appealed the Medicare denial and the reconsideration Decision was unfavorable

justme54 | @justme54 | Apr 6 7:50am

I did receive some advice from a nutritionist when I was first diagnosed with PNETs. I was told to do low inflammatory foods and to try like a Mediterranean type diet. This seems to have helped the inflammation and lowered my pain.