NET tumor of pancreas (1 cm) diagnosed

Hi there. Sounds similar to me. 1.6cm at most, grade 1. Tho mine was squishing closed the pancreatic duct and that atrophied away 1/2 my pancreas. First opinion too was watch it. 2nd was have it removed. 3rd was remove as well. Maybe getting another opinion might be an idea too for you?. Gives you more information. Better to know than maybe worry needlessly. When mine was removed and alas surprise it had spread to one lymph node. So now recovered from surgery and waiting on appt for possible next steps. Otherwise surgeon says he’ll see me every 6 months for 5 years. I’m 64. Glad I did it All the best. Everyone is different!

What surgery did you have; a whipple or just a removal of the tumor? Where was the surgery done? Was it at a facility that has a lot of experience with this type of tumor?

Hi there. Sounds similar to me. 1.6cm at most, grade 1. Tho mine was squishing closed the pancreatic duct and that atrophied away 1/2 my pancreas. First opinion too was watch it. 2nd was have it removed. 3rd was remove as well. Maybe getting another opinion might be an idea too for you?. Gives you more information. Better to know than maybe worry needlessly. When mine was removed and alas surprise it had spread to one lymph node. So now recovered from surgery and waiting on appt for possible next steps. Otherwise surgeon says he’ll see me every 6 months for 5 years. I’m 64. Glad I did it All the best. Everyone is different!

Thank you for your information of how your PNET was handled. While I am sure surgery was a bit scary, it also must have given you a sense of relief, knowing it is no longer festering inside you. (Maybe "festering" is a bit too graphic, but it is how I feel about any cancer. It is just bubbling, waiting to pop and send it's contents throughout your body.) I have two days of testing at Mayo in Rochester next week. I am hopeful that the tumor is still small but also know they will refuse to remove it. If the doctors there decide to change me to a yearly check, I will be looking elsewhere. Mayo is a fantastic facility, but they are not without error. I have gone to an Internal Medicine Physician at Mayo for five years because I also have SIBO (Small Intestinal Bacterial Overgrowth). He had me tested yearly. However, when I tried to reach him in October, after my multiple pulmonary embolisms, I was told he was NOT my primary physician and I would have to start the process of becoming a patient of Mayo all over again and would not be guaranteed the doctor I have seen for years. This makes absolutely no sense to me and has further engrained in me that I am simply a case number and not a person who has concerns which would help through some continuity. Sorry, just my beef with a highly recognized institution that prides itself on patient care!

Thank you for your information of how your PNET was handled. While I am sure surgery was a bit scary, it also must have given you a sense of relief, knowing it is no longer festering inside you. (Maybe "festering" is a bit too graphic, but it is how I feel about any cancer. It is just bubbling, waiting to pop and send it's contents throughout your body.) I have two days of testing at Mayo in Rochester next week. I am hopeful that the tumor is still small but also know they will refuse to remove it. If the doctors there decide to change me to a yearly check, I will be looking elsewhere. Mayo is a fantastic facility, but they are not without error. I have gone to an Internal Medicine Physician at Mayo for five years because I also have SIBO (Small Intestinal Bacterial Overgrowth). He had me tested yearly. However, when I tried to reach him in October, after my multiple pulmonary embolisms, I was told he was NOT my primary physician and I would have to start the process of becoming a patient of Mayo all over again and would not be guaranteed the doctor I have seen for years. This makes absolutely no sense to me and has further engrained in me that I am simply a case number and not a person who has concerns which would help through some continuity. Sorry, just my beef with a highly recognized institution that prides itself on patient care!

Did your Internal Medicine doctor move onto something else?

No, he did not. I was on the phone for two days being shifted from one department to the next with each one reading the same script. I finally got to his nurse and told her how difficult it had been to even get to her. (Because he was not, "my doctor" in their system, I couldn't even send a message via My Chart.) She was the answer to my prayer's and had me hold while she visited with him and came back with, "He would be happy to see you on ?? (I don't remember the date, but it was within 2 weeks)" Now it's the same song and dance...can't see him, need to register again, see if they will accept your case, assign you a doctor. It is an absolute insane system which was implemented recently. My pancreatic doctor will be on a video call with me in August, but who knows how long I will be able to be his patient? A person really needs some continuity!

Due to and since covid started, I haven't really had an Internal Medicine primary doctor. I finally had one doctor assigned to me about 18 months ago, but she just decided to move to Rochester. I go to Phoenix. It can be frustrating, but it appears that getting qualified primary care doctors here, and qualified doctors in general, is a challenge. Friends in the healthcare industry have confirmed this. Since I have pancreatic cancer as well, I value that all of my medical care, and records, are at one place. Though it definitely lacks continuity, I don't want to start over somewhere else. I love my cancer team. They kept me alive.

No, he did not. I was on the phone for two days being shifted from one department to the next with each one reading the same script. I finally got to his nurse and told her how difficult it had been to even get to her. (Because he was not, "my doctor" in their system, I couldn't even send a message via My Chart.) She was the answer to my prayer's and had me hold while she visited with him and came back with, "He would be happy to see you on ?? (I don't remember the date, but it was within 2 weeks)" Now it's the same song and dance...can't see him, need to register again, see if they will accept your case, assign you a doctor. It is an absolute insane system which was implemented recently. My pancreatic doctor will be on a video call with me in August, but who knows how long I will be able to be his patient? A person really needs some continuity!