Retroperitoneal mass

@bijou17 I am a little confused. Do you have a new 3.1cm retroperitoneal
mass favored to represent a neuroendocrine neoplasm?

@tomrennie yes that is correct

@bijou17 Were you able to get the dotatate scan scheduled? It appears that your typical carcinoid might have spread. The dotatate scan should help determine that. Are any additional tests scheduled? Are you experiencing any new symptoms?

Yes, I have the scan June 19 I had a 24 hr urine test and a couple other blood tests. I haven’t got the results back yet.

Funny thing is is that mass was there in February 2025 but nobody reported it on my report and for the way I feel all my blood work is kind of gone out of whack like my sugars are high 12 pound waking in 30 days cholesterol went way up All in April high inflammation other than feeling tired not too much else. Have you dealt with these nets before?

@bijou17 It's great that you are having additional testing done to confirm the diagnosis. Hopefully the scan on the 19th will complete your testing, so you will know what's going on. The waiting on the tests and results can be excruciating by themselves. I am not good at that. How do you manage the waiting?

@bijou17 It is strange that it was not on your scan report back in 2025, especially if it is visible in the scan. That might explain some of your symptoms though. I was diagnosed with a stage 4 pancreatic neuroendocrine tumor back in 8/22. I have been living on chemo since.

@tomrennie well actually this was all new to me but when they removed the nodule in my lungs dr didn’t think it was cancer but pathology report stated it was a typical carcinoid with stas positive. He told me that I am good now just do a ct scan af 6 months I wasn’t thrilled to wait that long especially bc since I had my
Mom and 2 older brothers die of lung cancer but I managed waiting okay.

@tomrennie it was in the ct with dye in Feb but it was not put in the report so no one mentioned it until this last cat scan and radiologist went back to Feb and saw it lit up. Wow how are you feeling?

@bijou17 Now that the report lists the growth, hopefully missing it will never happen again. I understand your concerns considering your family history with lung cancer. Have you had any genetic testing done? I feel fortunate to be alive. Living on chemo can have some challenges, but I live a relatively active life. Four years ago, things were very different. Thanks for asking.