@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!