1. < Neuroendocrine Tumors (NETs)
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NET pancreas

Posted by michaela258 @michaela258, 4 days ago

Hello everyone,

I was recently diagnosed with a neuroendocrine tumor (NET) in the head of my pancreas measuring about 1 cm. At the moment, I have a PET scan and CT scan scheduled, followed by a biopsy of the tumor.

I would like to ask if anyone here has experience with this type of diagnosis and could share what usually happens next. What kind of treatment did you go through? What symptoms should I expect, if any?

I am also very worried about my prognosis and life expectancy. I know every case is different, but I would appreciate hearing from people living with a similar diagnosis and how long they have been able to live with this condition.

Another thing that confuses me is that my doctors have not explained much to me yet, so I still do not fully understand whether this is considered cancer or something different.

Thank you to anyone willing to share their experience or advice.

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

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dtkach37 | @dtkach37 | 1 day ago
In reply to @doonman "@dtkach37 Thank you for responding. Just a little background on my situation. I had a Pnet..." + (show)
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@dtkach37
Thank you for responding. Just a little background on my situation. I had a Pnet removed from my small intestine along with part my ascending colon and the removal of ileocecal valve in 2004. I also had my gall bladder removed 2022 although not malignant in anyway. I did not ever have chemo treatments or something similar. I received Octreotide scans for 2 years and then did my annuals every year. Last October my Chromogranin A test came back high for the 1st time in 25 years. The test led to a discovery of the two slow growing tumors currently in my pancreas. I mention this so hopefully you will be diligent in your ongoing testing, obviously it was important to me. I'm seeing a surgeon on Monday to get his opinion on whether surgery is even an option and to what end. He may agree that my best course of action is to continue the Lanreotide injections and then so be it. But with that being the course of action it resigns me to play for a draw. Meaning, To keep the cancer a bay. My personality is not a guy who plays for a draw, so that's why i appreciate you posting, as our cases seem similar in many aspects. Thank you and continued good health.

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@doonman I'm not sure that playing for a draw at our age is a bad thing. My surgeon told me that if the NET came back (which is unlikely) that because of its slow growth rate it would not pose any functional harm and I would not need to do anything because of it and I would likely die of other causes... similar to what many guys hear regarding slow growing prostrate cancer. "If you live long enough you will get prostate cancer but not die because of it."

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