High risk surgery. Is it worth it?

Patrick, were your tumors NET’s? Who is your oncologist at Barnes?
I was diagnosed with a NET on the head of my pancreas. I am now seeing a NET specialist at Barnes and he has sent me to a pancreatic surgeon at Barnes. The plan so far is it wait and watch the tumor. I will see the specialist March 12, getting another scan to see if it has grown. I live just west of Washington Mo. Do you know of any groups like this locally here. There are two types of surgery for my particular Pancreatic Neuroendocrine Tumor(PNET ). A complicated Whipple Procedure with bad after affects or Enucliation which is less invasive. I’m told my tumor fits the criteria for Enuc except that it is too close to the pancreatic duct. So the surgeon at Barnes said she will not do Enuc. I am going to ask for second opinion from MAYO after result of this coming testing. So many unknowns and so many questions. My e-mail is, charlie@fidnet.com. If you were open to staying in contact that would be great and if not I understand. I am 71 years, grew up in St. Louis (Dogtown). Worked in St. Louis as a Sheet Metal Worker local 36.
Hope you continue to stay well.

I have been fasting now for a month. Not eating till 12pm each day. I have had improvements in my health and general well being.
I had chronic diarrhoea for months going sometimes 20 times a day. That has stopped and my movements are almost normal now.
I’ve lost 5 kilos in that time.
So fasting is great.
I don’t want to have the surgery, but feel if I get this one out I can use lanreotide to control any others that may develop.
Thank you for sharing your journey

Wow everyone is on such a different journey.
I also have chronic diverticulitis in my descending bowel. Assuming it was diverticulitis flaring up led me to find my net.
I’m now intermittent fasting each day, which is helping with the diarrhoea and feeling generally much better.
Waiting for doctors and appointments has disrupted my life. We are constantly rearranging our schedule, cancelling plans, making more medical appointments.
Waiting for the next results or the doctors to arrange referrals etc.
We try not to be constantly discussing treatments and avoid focusing on my health issues.
one side effect of the pet scans is the other unrelated findings in the reports. Surgeons only focus on the part of the report related to their area and completely ignore other findings
You need to become a researcher into medical terms as even GPs struggle with them
I now have appointments with Urologists, endocrinologists, dieticians as a result of the scans. Potentially more operations
I had hoped that this year I would stay away from Doctors but it’s becoming worse than last year.
I want it to stop but maybe next year.
Good luck with your tests and thanks for contributions.

Yes mine is in my lymph system and I’m expecting to find more with each 6 month scan
The Petscan does not show them all and my surgeon removed six others that didn’t show on the pet.
This surgeon wants to open me up to be able to see the tumour before he decides if it is removable. But also to see if there are others around it.
I have a feeling that the surgeon feels mine is a low priority tumour compared to the others he is operating on currently.
Each of us feel like the world should be focussed on us, but there are many others much worse off

Sounds terrible what you are experiencing.
I can relate to some
I have controlled my diarrhoea, pain and bloating by intermittent fasting
Not eating till after 12 each day.
I’m eating a lot of eggs and avocado etc and avoiding processed food. Though I have a cheat day on weekends to share a breakfast with my wife.
Controlling the inflammation i have had for many years is my priority and hopefully keep my tumours under control

Thank you both for your comments. So far no lymph nodes! But the descending colon, the diverticulitis in the Sigmund is very painful. This daily diet might give me diarrhea relief. THK.

Has anyone had a combo of NETS...then a strange b!old starting low, low Iron, infusions, brought up Iron, strange change in my RBC. increasing over 54 and rising while l struggle with my gut problem 9 polyps, plus a lot of junk non cancerous , just massive amounts of colon wall inflammation filled with edema, and diverticulitis. They had to stop procedure in fear of tearing my colon wall. Was put on antibiotics in E.R., Procedure was done again along, with MRI with contrast, CAT scan 2 twice, noticing my lungs nodules compared to previous left side now had nodules one larger, right side lower one larger. I have flushing, fevers, abdomen swelling bloating. CAN someone say , " Why the bloating.? " My GI. Called me "The Google patient." I answered their questions , for them. All but the increase in RBC! I am worried l will stroke out, heart attack ..oncologists do not know WHY.RBC. Increase after the 8 iron infusions over 4 weeks!!! Pass this to whoever! I am outside of Boston, Mass, General Cancer Center, l am 74 years old Tuesday, l am very frustrated! As my Pulmonologist said before she knew l had NETs, went in short of breath, coughing and joked me off. I went back, per oncologist she is worthless. My Pet Scan from tomorrow Monday her nurse will explain it to me, l can interpretation of it myself. He'pplp. With my blood RBC? Shattered glass referenced in my lung? God, help me!

That is great. I really believe in diet for control or help with control of carcinoids. I have found that what I eat and how much is something that directly affects our bowel movements. I had to battle the diarrhea thing too and had to learn by trial and error. Yesterday and this morning was perfect. Here is what I ate. One small cup of coffee with a little creamer. Three eggs with four pieces of whole grain bread made into two sandwiches with a bit of Miracle whip and that was breakfast. I had about fifteen potato chips (plain chips) as a small snack at about 2:00p.m. Nothing more until the evening when I had a meal of spaghetti with tomato sauce and mushrooms. I had ten Brussell sprouts and that was it for the day. I drank nothing except occasional sips of water. I don't recommend the chips at all but I felt I could get away with a few. Instead my normal thing is a bowel of colored peppers, baby tomatoes, halfa cucumber and a few sections of apple (all of which is basically water. I believe in colored peppers as being very helpful in nutrition. Three basic factors here---few calories, no soft drinks or fruit juices (I have not drunk anything except water and a cup of coffee for over nine years, there is little meat in my diet generally unless you count a few eggs and a bit of fish on occasion, but most of all a limit on my calories. I really believe it helps no matter what any doctor will say. I still think a lot of what you here from whoever, including myself, is speculation. Until Iam told that this is how people get carcinoids, I will keep an open mind. No one knows and so I go with what works for me as an individual. I still think a lot of this is basic biology on basic biological principles at the cellular level.

Exactly, what works for you, is the key. I’m currently away on a road/ diving trip with mates. First time in six months and I’m nervous about unexpected and urgent movements.
I’m sticking to my fasting and so far so good.
I’ll have a few cheats I’m sure but it works.
Thanks for sharing

I’ve had complicated diverticulitis in my descending bowel for a decade.
At one stage I was considering having it removed.
I stopped taking antibiotics each time as they wipe out your good bacteria as well.
Certain foods, mainly those with seeds, cause flare up’s for me, but the biggest risk for me is dehydration and constipation.
Try the fasting as it relieves pressure on the bowel. The scaring from the diverticulitis narrows the bowel and cause’s pressure build up.
Rest your bowel for 16 hours a day helps me