1. < Neuroendocrine Tumors (NETs)

Grade 1 Non-functioning (NF) NET

Posted by beaglebass @beaglebass, May 9 11:12am

I have a well defined NF 1.7cm PNET in the body and a 6mm tumor (not biospied) in the tail of the pancreas. PET scan clear. Has anyone had a distal pancreatectomy with or without spleen removal and avoided metastasis after surgery? How big was your tumor before surgery? If you had metastasis, how long before it showed up? Where did it show up and what is your treatment? How are you doing?

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

pavlina60 | @pavlina60 | Jun 10 10:36am
In reply to @matt2024 "Hi @pavlina60! It's great to hear from you about your journey. I have found that physical..." + (show)
@matt2024

Hi @pavlina60! It's great to hear from you about your journey. I have found that physical activity is the most helpful for me and do also follow a low carb diet (nuts, veggies, meat, etc. - I have also learned to love cauliflower in all of its forms - riced, mashed, etc.) The other thing that I found with Creon is that the fat content of the food can affect the glucose spikes - more fat = slower absorption and lower carb impact over time.

I would be surprised if your Doc would order a med for your A1C of 6.6. My endo's goal for me is to be 80% in range of 70-180 daily and 180 is about a 8.0 A1C so I would think you are doing great! If you have a CGM, perhaps you can experiment on food/activity level to dial in your target?

Jump to this post

Hi, @matt2024 ! Thank you for reaching out! I am "almost"vegetarian- very little meat and ear mostly fish, sardines, some chicken, chickpeas, lentils and bean plus lots of veggies. I am carefull with those as I am also on blood thinners ( coumadin) for two previous strokes. I keep fat to a minimum, even though I take Creon ( only 1×24000 with meals; my snacks are mostly fruits). I will follow your advice for more physical activity now that weather is getting better ( I live in Central New York State). My PC was concerned about the BG, and A1C. I have an endocrinologist appt next week, will discuss that with him. I know that between not having healthy pancreas to produce insulin ( and liver mets) and side effect of the Lanreotide it will be hard to control it. But I would like to stay away from meds as long as I can :).
Thank you again for your post! I will also strive to be the " healthiest cancer patient"
Hugs! 🦓💜

REPLY
suzyis7 | @suzyis7 | Jun 11 8:29am

In December of 2022, I had surgery for a P-Net, NF, 1.7 cm. on the tail of my Pancreas. Part of the body, the tail, and the spleen were removed. Also, 13 lymph nodes. Every three months, I have a CT-scam and so far no recurrence. (This was an incidental find.). The recovery , looking back, was not too painful. My surgeon was wonderful and had done his training at Mayo, so I felt very secure with him and his team. By the way, I am 83.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 11 12:00pm
In reply to @suzyis7 "In December of 2022, I had surgery for a P-Net, NF, 1.7 cm. on the tail..." + (show)
@suzyis7

In December of 2022, I had surgery for a P-Net, NF, 1.7 cm. on the tail of my Pancreas. Part of the body, the tail, and the spleen were removed. Also, 13 lymph nodes. Every three months, I have a CT-scam and so far no recurrence. (This was an incidental find.). The recovery , looking back, was not too painful. My surgeon was wonderful and had done his training at Mayo, so I felt very secure with him and his team. By the way, I am 83.

Jump to this post

I appreciate our encouraging post, @suzyis7. Congratulations on your CT scans showing no recurrence. I'm glad that you had a well-trained surgeon.

Did the removal of part of your pancreas result in any blood sugar problems for you? I'm also wondering if you need to take Creon or other digestive enzymes.

REPLY
1 reply
suzyis7 | @suzyis7 | Jun 11 1:11pm
In reply to @hopeful33250 "I appreciate our encouraging post, @suzyis7. Congratulations on your CT scans showing no recurrence. I'm glad..." + (show)
@hopeful33250

I appreciate our encouraging post, @suzyis7. Congratulations on your CT scans showing no recurrence. I'm glad that you had a well-trained surgeon.

Did the removal of part of your pancreas result in any blood sugar problems for you? I'm also wondering if you need to take Creon or other digestive enzymes.

Jump to this post

Thanks!
Regarding blood sugar issues: Not yet, but it is being monitored.........
Also no digestive enzymes at this time.
I do get anxious every three months when it is time for blood work and the CT-Scan.

REPLY
1 reply
matt2024 | @matt2024 | Jun 11 1:56pm
In reply to @suzyis7 "Thanks! Regarding blood sugar issues: Not yet, but it is being monitored......... Also no digestive enzymes..." + (show)
@suzyis7

Thanks!
Regarding blood sugar issues: Not yet, but it is being monitored.........
Also no digestive enzymes at this time.
I do get anxious every three months when it is time for blood work and the CT-Scan.

Jump to this post

I had heard this is called scan-xiety!

REPLY
View MoreView Less
Please sign in or register to post a reply.