Prognosis for Metastasized NET

Hi. Good to hear from you. I will try to help. What I have done has worked for me. It has come about through trial and error, and logic combined with my biological knowledge which of course has its limits. Before going into what I do eat or my diet, here is what I don’t eat. I eat no red meat like pork or beef and generally few eggs (maybe two a month on a Sunday). I don’t eat out whether fast food or at restaurants. I don’t eat pizza or any pre-prepared foods you can buy in grocery stores. They all have too much either fat, salt, sugar and calories. Dairy is a bit problematic. I don’t drink milk but have a dab of cream in my coffee. I don’t eat cheese but use a cheese sauce in one of my meals. I don’t eat ice cream except as a rare treat like on my birthday.
I don’t do any soft drinks or fruit juices and no citrus except what is in a tomato. I rarely have fruit, maybe a few plums during the summer.
What I do. I believe, when you have cancer of any sort, on calorie restriction as primary and also as much as possible the avoidance of sugar whether high fructose or refined sugar. I also avoid products with artificial sweeteners. I believed in what is essentially a plant based diet (with the addition of either chicken or salmon in small quantities).
My day in diet—
I begin each morning with a walk taking a dog with me. This is before I eat or drink anything. I then toast three bagels and put some cream cheese on them and also have a cup a coffee with a little cream. I can’t give up my coffee but it probably is not the best. If I have an additional cup later I will need to visit the rest room shortly after. I never have a third cup. About 2:00 p.m. I have either a can of sardines or a few slices of bread and that is it until dinner at about 6:00 p.m. My meal then is a salad and a main course plus a cooked vegetable.
The salad is always a colored pepper, cucumber, apple and some grape tomatoes (some people have trouble with tomatoes but I don’t) on which I pour on some apple cider vinegar but no prepared or store-bought salad dressing or any salt or pepper. We have two basic meals that my wife and I share, each for three days as she makes enough for three days between us. That means that each day I get a sixth of each of these recipes
The one is: two cups of rice(red, white brown and wild combination) with a half cup of barley, three chicken breasts, a half bag of frozen carrots, a jar of mushrooms, two to three ribs of cut up celery, a can of either cream of chicken, or mushroom or celery soup. Sprinkle some Mrs Dash(no salt or other spices) and she uses chicken broth and water to cook the rice. She cuts up a pepper into it and cooks it all in a crock pot.
The other meal which is again three days’ worth for both of us is:
Two cans of salmon with the liquid from the can but no skin, a pound of whole grain pasta, a jar of mushrooms, a can of celery soup, some chicken broth, a cheese Alfredo sauce, a half of a cup of sour crèam. Some Mrs Dash.
As I mentioned above, on each day I get a sixth of one of these meals.
Also daily I eat a serving of either broccoli, cauliflower or Brussel sprouts. I pour apple cider vinegar on them. I believe in vinegar as a health help.
That is basically it. As you can see. Very few calories and actually a very boring diet.
I do take a few vitamins. D3 4000 IU, B12 250 mcg, a Centrum silver and Ferrous Sulfate 325 mg. I don’t know if any of them help anything really except for the Ferrous Sulfate as my lack of meat I assume keeps me from having my hemoglobin kept at an acceptable level and the Ferrous sulfate keeps it up where it needs to be.
Two non-dietary items -I have been taking an LAR octreotide injection every four weeks for 10 years—I assume it helps but you never know about cause and effect.
The other thing is that the two goals of a carcinoid patient are to limit release of hormones and the spread of the tumors. I believe one thing that helps is to control your stress levels which ideally means to try to not stress about things at all. I know that stress causes the release of hormones and so a lot of avoiding stress means changing habits and attitudes. I have had to work on that for a few years. I found it was about changing my perspective. I don’t stress on anything even this illness. Everyone has problems that come up and rather than fret about them I either do something about them or accept and live with them by adjusting or adapting. I hope I don’t sound preachy here and don’t mean to, but I just avoid, at this at age especially, stress and worry.
As I stated before I am about to get to the 20 year mark and I still have the tumors in three places but they sort of just lie there. My lab numbers on my blood work have been great especially considering where I started out 20 years ago. No guarantees that things will stay that way but for now my life is pretty well in good shape.
I hope this helps and isn’t too much info.

I have been dealing with carcinoid tumors for 19 and a half years and am a long time survivor. I currently have about five fairly manageable ones in that they seem to be dormant as far as growth-- in my liver(2), mesentery (2) and heart(1). I take LAR sandostatin every four weeks for the last ten years. I try to be proactive, as I see it, in managing what I eat or drink, with a diet which I think hinders tumor growth. This is my suggestion to your husband--do not drink any soft drinks or fruit juice like you get in a store which are loaded with sugar. In fact avoid sugar as much as possible, no candy, no sugar cereal(they almost all have it except for shredded wheat). Secondly cut your calories and lose weight that way. This is what I do almost daily--Two bagels with cream cheese and one cup of coffee. For lunch a can of sardines. For dinner a salad of peppers, cucumbers, tomatoes and apple and then a casserole dish with either pieces of chicken or salmon with a certain amount of pasta or with a rice/ quinoa combination. I also eat a cooked serving of broccoli or cauliflower or Brussel sprouts.
I don't drink or smoke and although 6'2" have my weight at 140 which is manageable. I can't say this works for everyone as each individual is unique but I believe it has helped me. The diet is fairly dull but I like living. I nap when I need to which is probably not possible for your husband. AND I have established in my mind habits to not stress about anything ( I think stress aggravates things). I take the approach when a problem comes up to just deal with it and not spend anytime brooding about it or thinking about it--to use that cliche---"just do it." As to the diet which restricts calories, I know all cells , both cancer and normal, need food to grow and reproduce and cancer cells need more. Oh and I limit fat intake considerably (avoid French fries and things like fast food hamburgers or processed meats). If one has to add more food do a form of protein or crackers. Most individuals don't wants to live with this kind of diet and their is no scientific proof that it works but I will be dealing with it in February for 20 years and my tumors are just there. ( I did have six lymph node tumors in my intestine that had to be removed some years ago because they were causing intestinal blockage). It was after that I got serious and restrictive on my diet. No guarantees on this but my tumors have stayed dormant(I have regular MRIs) AND I have no problem functioning in daily life. I hope this is of some help--good luck and God bless.

10/11/24
Update---Nothing has changed since I wrote this except I have substituted eggs in the morning for the bagels. It is protein in the morning which again I believe is the best course for eating for carcinoid persons. I keep my calories still down and avoid sugar. Daily life is good and I feel as strong as ever. I keep my weight at 135 lbs.--It has been 21 years now, I am 77 and the tumors are still there like good renters of my body space.

Hi Margaret, every year my husband has a Dototate (sp?) PET scan. It is a more advanced PET scan that picks up smaller tumors and is great for NETs. My husband has 3 tumors in his liver and yes, they are cancerous. Bc there was change in this last scan and the tumors have grown, not a lot but enough and it's spread that's why the surgeon is recommending the surgery. If you haven't found a PET scan facility that has the Dototate PET scan I recommend you find one. And Oncologist who specializes in NETs would be aware of that scan. Make sure your Oncologist does specialize in NETS Not every oncologist knows how to treat them. Do research too. If you don't mind me asking, where did yours originate from? Or is everthing just in your liver? If just in your liver I would go to a liver specialist. We are be fortunate to have a great team. The surgeon and his partner are both Oncology surgeons who specializes in NETS. A CT scan with contrast will also show tumors but not always the small tumors that NETS produce. But at least it'll see a tumor. Then a biopsy would be necessary. Keep me posted. And I hope you get some answers. Hugs...I know it's scary. Right there with you.

Are you all at Mayo Clinic in Jax or Rochester if you don’t mind me asking I’m a new diagnosed pancreatic cancer with nets