Has anyone chosen the Watch and Wait and regretted that choice?

personally i do not like the wait and see strategy. My thought… study and learn as much as you can and get second and third opinions… and if at all possible, get them surgically removed

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I wasn’t experiencing any symptoms at all other than the bout of pancreatitis that put me in the hospital for scans (thank God) when they found the tumors. I had pancreatitis 15 years ago (I am 50), but after having my gall bladder out, I hadn’t had a recurrence.

They took about half of my pancreas, my spleen, and some lymph nodes. My glucose levels have been great, and there is no sign of diabetes. I have been on a low sugar, low fat diet. Low-sugar just to not feed any other tumors that might be growing (not sure how helpful that is), and low-fat to lower the digestive load on my little half-pancreas. 🙂 That has worked fine for me. I can’t eat a lot at each meal. It feels like my stomach is tiny, and if I eat too much I get quite a bit of pain. I have been eating more smaller meals throughout the day, and that has been working for me. Hope that helps.

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@augustine777

Many of us, myself included, had NETs that were found incidentally (during a test that was looking for something else). It sounds as if you have adjusted your eating habits so that you can be comfortable with a smaller pancreas.

You are fortunate that your glucose levels (blood sugar) have remained normal.

What type of follow up has been suggested to check on the status of the NETs?

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Hi billyfeet,
I had two NETs on the tail of my pancreas both over 2 cms. They were both grade 2, well-defined tumors. I had a bout of pancreatitis caused by the tumors, and they found them. I had my distal pancreatectomy and splenectomy on March 6th, so, just over a month ago. They also took out 10 nearby lymph nodes. Of the 10, 3 of them were NETs. Because of the low grade tumors, my oncologists are thinking I might possibly be done with cancer; I go in today to see if they are going to do any adjuvant therapy to reduce the risks of recurrence. Fingers crossed.

As for whether I regret it, not at all. If we would have waited, the chance of metastasis to my liver or lungs was really high. It still could happen. But even being grade 2 tumors, they were growing pretty big. They had also started to move into my lymph nodes. Depending on the of type tumors, waiting can just mean growing and spreading. That was my experience at least.

As far as the surgery, he did a full incision, a full 12” long to go in and be able to run an ultrasound on my pancreas and everything to make sure he had the margins he wanted. I am not going to sugarcoat it. The first week in the hospital is pretty rough with a full incision. It sounds like it is less so with laparoscopy. You are managing pain and trying to get your digestive system running again. Still, no regrets. There are some people on here that have done day by day journals of their time in the hospital. I would read some of those as well.

Good luck. Sounds like you have a tough decision ahead of you.

Blessings,
Scott

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Thank you Scott for your input. I have made the decision to have surgery, but with good information like your experience to help me feel the choice is correct those days of painful recovery may go better. Wishing you continued recovery and remaining cancer free.

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@t26

I appreciate your comment! Learning as much as possible about this rare cancer is important. Getting more than one opinion is also the best way to go about making decisions.

I would just add that getting these other opinions from a NET specialist is important. Mayo Clinic has NET specialists in all three of their locations. Information about appointments can be found at http://mayocl.in/1mtmR63. In person or virtual appointments can be quite helpful.

Also he Carcinoid Cancer Foundation has a website with NET specialists throughout the world. Here is the list,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Did you personally get 2nd and 3rd opinions, @t26

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My Journey of doctors and second opinions
- Local Community PCP ordered Ultrasound because of Liver pain..bingo
- The Cleveland Clinic Foundation (Dr Alok Khorana)..only 3 months there
Only treatment was some Sandostati shots
- Second Opinion through "Best Doctors" from Duke (Dr Morse, NET Specialist) ....Confirmed it all
- University Hospital Health Systems (Dr Amr Mohammed - NET Specialist Oncology) ...CapTem Recommendation
- Eric Liu, Rocky Mountain Cancer Center NET Surgeon
Captem Recommendation and not a surgical candidate uopn diagnosis ..to many liver mets
- Dr Nutter Consult, the Nutting Clinic..was considering y-90 but did not
- Early 2022....Cap/Tem worked great !! Dr Liu says I can get debulked
- University California San Francisco ( Emily Bergsland, NET Specialist Oncology) but also met with interventional radiology
Surgical consult which they did not recommend because still excessive tumors .....they liked bland embolization
- Universiy of Iowa, James Howe, Liver Surgeon....said he could do the surgery.
- The Mayo Clinic ...Dr Thor Haldafarson ( NET Specialist - Oncology) and Dr Cleary, Surgeon liver and pancrease...yes surgey

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I have my second appointment with my medical oncologist today. I am in Washington State, but my doctor is in Idaho. By a stroke of luck, my doctor is good friends with Dr. Halfdanarson and has spoken to him about my case (I guess they went to college together). My doctor also did genetic testing on the tumors. There is no current evidence of any other tumors in my body although I am technically stage 3 because of the lymph nodes. He is discussing with Dr. Halfdanarson whether we should do some adjuvant therapy to go after any cancer cells to lower the possibility of recurrence. Whether we do adjuvant therapy or not, I will be doing scans every 6 months to watch for any other metastasis. Because the tumors are grade 2 and slow growing, I will be doing scans for a longer period of time to make sure. At my appointment today I will find out if there is any plan for adjuvant therapy and what my schedule is for scans.

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Presently My quarterbacks are Amr Mohammed & Eric Liu and Thor Halfdanarson & Sean Cleary.

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