Anyone have a Neuroendocrine Tumour?

[Chancery]

I know this is rare, but anyone out there with a NET? I was just diagnosed with one of these today and they are talking about taking away part of my pancreas, which I expected, but also removing my spleen, which I did NOT expect. Not keen on having that done, but I'd love to hear if anyone else has had this done and how they have fared in life without their spleen. I'm 66 and have a bit of a fear of infections as they always seem to knock me on my a**e these days, so losing my immune support of my spleen - not so good. Anyway, thanks in advance if you're out there - hope to hear from you.

[Gcart]

just going out now but I had one removed NET that is. Will contact you later

[Chancery in reply to Gcart]

Thanks, I'd be really happy to hear from you.

[anicief]

I was diagnosed with NET on my Ileocecal valve (Colon area) December 15th, 2022 and had it removed on February 3, 2023. However, I also have one located on my spine at the T11 (thoracic region). Unfortunately, I am a rare case which it started on my spine and moved to the colon bypassing the liver and pancreas. End of March I am having an MRI to the spine to see how bad it is because the back pain is and if surgery will be required or if I can do some type of PRRT, Proton treatment, etc...

[Chancery in reply to anicief]

Really sorry to hear that. I was diagnosed in December and they wanted to take it our in January. However, I asked for more tests and pointed out that I thought I had Carcinoid Syndrome, PLUS they had never looked at my lungs to see if they were okay. I've had a hormone scree done, a month ago, and not a word from anyone re scanning my lungs etc, or with results. I have no idea what's happening and the urgency when I was first diagnosed seems to have gone out the window. I try hard not to be angry, but I am generally underwhelmed with how this is being managed. Part of me wishes I'd just had them operate straight away, but I still don't want to lose my spleen!