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.

beaglebass | @beaglebass | May 14 5:59pm

Thank you for sharing. Best of health. Plz. Stay in touch. AM I UNSTANDING SPREAD AFTER 4 YEARS !

beaglebass | @beaglebass | May 14 7:18pm

Thank you for sharing. Just worried. I'm getting a second opinion then making a decision for the surgeon. Wish you favorable diagnosis. Kenneth

Liz | @lizzyeastwood | May 15 4:09pm

In reply to @beaglebass "Thank you for sharing. Best of health. Plz. Stay in touch. AM I UNSTANDING SPREAD AFTER..." + (show)

Hi. I have not been told that there is any metastasis. There is a small nodule on my lung; a year ago radiology report said nodule looked suspicious. My six month scan in December 2023 said again that nodule looked suspicious. A biopsy has not been suggested yet. I am assuming that drs were not too concerned about the lung nodule. I see the oncologist next week and I will report back here any updates.

Liz | @lizzyeastwood | May 15 4:16pm

In reply to @beaglebass "Thank you for sharing. Just worried. I'm getting a second opinion then making a decision for..." + (show)

Second opinion is always advisable. Hopefully you can find a dr that treats Pnet patients regularly. The Ki 67 number is an important to know. There is also a Facebook page “Ronny Alan’s nueroendocrine tumor group”. Hundreds of people from around the world with net tumors are part of his group. They have a lot of good information to share.

c2pricorn66 | @c2pricorn66 | May 20 6:48am

In reply to @beaglebass "Thanks for sharing. I will seek surgery ASAP after 2nd opinion from academic medical center. Just..." + (show)

Get it done sooner before it spread. The recovery is slow but as long as you follow the post op instruction and perhaps watch what you eat. Hubby is on antibiotics in am for life, creon 25,000 3X a day and 10,000 in between. Always check your blood sugar level and seek advise should it goes up or drop always have some jellybeans and healthy snacks with you. Always watch for your due injections.

c2pricorn66 | @c2pricorn66 | May 20 6:58am

In reply to @lizzyeastwood "Hi. I have not been told that there is any metastasis. There is a small nodule..." + (show)

Hi when you see your onc team, ask lots of questions regarding the possible intervention n' treatment before it gets worse and what is the plan? Sometimes you have to bombard them with questions as not all Drs are proactive with decision making.

Liz | @lizzyeastwood | May 20 6:02pm

In reply to @c2pricorn66 "Hi when you see your onc team, ask lots of questions regarding the possible intervention n'..." + (show)

Thank you! I really needed to hear that because I do get intimidated and I don’t ask.

Turkey | @tomrennie | May 21 8:47am

In reply to @lizzyeastwood "Thank you! I really needed to hear that because I do get intimidated and I don’t..." + (show)

Initially, I would write my questions down so I would not forget. The entire process can be intimidating and overwhelming. Try to take some of the pressure off of yourself.

Liz | @lizzyeastwood | May 21 9:18am

In reply to @tomrennie "Initially, I would write my questions down so I would not forget. The entire process can..." + (show)

That’s a perfect idea, because my children have questions too! Thank you again. Writing my questions and concerns down will definitely ease the stress.

Turkey | @tomrennie | May 21 5:26pm

In reply to @lizzyeastwood "That’s a perfect idea, because my children have questions too! Thank you again. Writing my questions..." + (show)

Also, write down what you need to during the appointment. This should be less over time hopefully. Nothing like remembering the most important question then forgetting the answer. Been there done that.