1. < Neuroendocrine Tumors (NETs)

My husband diagnosed with Stage 4 pNET: What should I know?

Posted by talkativeinfl @talkativeinfl, May 7 12:57pm

It turns out that my husband has actually had this since at least 2014 when he had most of his pancreas removed as well as his spleen, due to a tumor. Developed another tumor in his transverse colon which was found in June after rapid weight loss prompted me to push him for a colonoscopy. When the tumor was removed they noticed abnormal spots on his abdominal wall. Fast forward to current day, he has had 2 different scans and it was determined that is has spread to his liver with "too numerous to count" tumors. So he has already had this for almost 9 yrs. He just turned 76 and I don't know what to expect or when. I noticed that he has had frequent memory issues where he was sharp as a tack just 6 or 7 months ago. Now I found out he has "severe Calcification" in 3 places in his heart. He is at a lets see which take me first place, how do I even begin to deal with that. Meanwhile he is worried about me not being able to live without his SS even though I am 22 yrs younger and am still fully employed. Any tips for this caregiver and her husband/patient?

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kim1965 | @kim1965 | May 8 10:21am

A couple of immediate suggestions, as we have all fought this battle for NET's. There is a different path for each case, but most of the successes have occurred when a NET Specialist Multi-Disciplanary Team is involved in your case. My wife's case involved Stage 4 also, with mass on pancreas, and also too numerous tumors on liver to count. Also 9 months of CAP/TEM, Lanreotide injections, and 80 % reduction in tumors in both locations, she was able to have surgery 3/1, and for now she is in good shape to try to keep this as only a mtn. function going forward. So the short story is NET can be beaten or at least managed, but starting with a NET Specialist is key to everything in his recovery. We wish you the best and let us know if we can help in any way.

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talkativeinfl | @talkativeinfl | May 15 1:22pm
In reply to @kim1965 "A couple of immediate suggestions, as we have all fought this battle for NET's. There is..." + (show)
@kim1965

A couple of immediate suggestions, as we have all fought this battle for NET's. There is a different path for each case, but most of the successes have occurred when a NET Specialist Multi-Disciplanary Team is involved in your case. My wife's case involved Stage 4 also, with mass on pancreas, and also too numerous tumors on liver to count. Also 9 months of CAP/TEM, Lanreotide injections, and 80 % reduction in tumors in both locations, she was able to have surgery 3/1, and for now she is in good shape to try to keep this as only a mtn. function going forward. So the short story is NET can be beaten or at least managed, but starting with a NET Specialist is key to everything in his recovery. We wish you the best and let us know if we can help in any way.

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Thank you so much for your input. We are working with a team at Cancer Specialists of N.E. Florida. My biggest concern is that they did NOT catch it when the tumor was confined to his pancreas. He had the major part of his pancreas removed with the exception of the head AND his spleen in 2014. Unfortunately, they did not test for PNET at that time. It was ruled a benign tumor at that time. He developed a tumor in his transverse colon which was discovered in June 2022 after I urged him to get a colonoscopy due to rapid weight loss. I had my suspicions at that time which were confirmed during a surgical procedure to remove the mass. A very astute and observant surgeon noticed spots on his abdominal wall and a funny shape to the outside of his liver that he was afraid to biopsy due to the length of time that the surgery had already taken and my husbands advanced age. He was afraid that it might cause bleeding that they couldnt control. Fast forward to present day and he now has been diagnosed with severe calcification in the arteries of his heart in 3 spots on top of the cancer. I am afraid that he wont try any other treatments and avenues, He is constantly tired and his sugar levels are all over the map. Not sure where to go from here except prayer.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 27 2:34pm
In reply to @talkativeinfl "Thank you so much for your input. We are working with a team at Cancer Specialists..." + (show)
@talkativeinfl

Thank you so much for your input. We are working with a team at Cancer Specialists of N.E. Florida. My biggest concern is that they did NOT catch it when the tumor was confined to his pancreas. He had the major part of his pancreas removed with the exception of the head AND his spleen in 2014. Unfortunately, they did not test for PNET at that time. It was ruled a benign tumor at that time. He developed a tumor in his transverse colon which was discovered in June 2022 after I urged him to get a colonoscopy due to rapid weight loss. I had my suspicions at that time which were confirmed during a surgical procedure to remove the mass. A very astute and observant surgeon noticed spots on his abdominal wall and a funny shape to the outside of his liver that he was afraid to biopsy due to the length of time that the surgery had already taken and my husbands advanced age. He was afraid that it might cause bleeding that they couldnt control. Fast forward to present day and he now has been diagnosed with severe calcification in the arteries of his heart in 3 spots on top of the cancer. I am afraid that he wont try any other treatments and avenues, He is constantly tired and his sugar levels are all over the map. Not sure where to go from here except prayer.

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How are you and your husband doing, @talkativeinfl?

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