r/neuroendocrinetumors • u/radarscoot • 5d ago
How do you recognize or acknowledge your challenges with NETs?
I was diagnosed and treated for Ocular Cancer (Uveal Melanoma) almost exactly 4 years ago just months before I retired. I have given most of the sight from my left eye to UM and I live with the knowledge that if it metastasizes to my liver there will be little that can be done.
I just spent the last month going through a bunch of diagnostic tests and in late September will be undergoing surgery to remove parts of my small bowel and large intestine along with my Ileocecal valve. I am not sure what I will be giving up to NETs yet, but the surgeon is hopeful that it won't be much from this surgery.
I will never be declared "free" of either of these cancers. They are both very rare (UM is ~6 people per million diagnosed each year). I feel like I should somehow acknowledge that. What I have seen of "warrior" T-shirts and things just doesn't do it for me. I feel like I am in "negotiations" rather than a war. I'm trying for peaceful coexistence as eradicating my challenger is just not within the capability of anything but luck right now.
I've seen t-shirts, pins, ribbons - even tattoos. Have any of you found something that helps you acknowledge your reality in a way that keeps you grounded and can help find peace when you need it?
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u/Kamelasa 4d ago
If it moves to your liver there is little that can be done? I guess there are many kinds of NETs. Mine is in my liver (and elsehwere) and they don't seem to take it seriously - so far. It's very frustrating. I told them two months ago to get in there with an ice cream scoop if they have to. The liver can regrow.
No, I have found nothing. I've done everything I can. Just have to wait. I hate that.
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u/radarscoot 4d ago
I was talking about the uveal melanoma (eye cancer). I know there are lots of options for NETs and some NETs are not very aggressive.
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u/Kamelasa 3d ago
Thank you. I was confused when your subject said NETs but then you said melanoma, and then the liver. I hope you find the peace you are looking for.
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u/radarscoot 3d ago
Thank you. I wasn't doing too badly when it was just the eye cancer. I'm finding it tough now with NETs being added. I mean - how many rare cancers am I going to collect!!!
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u/Kamelasa 3d ago
I know, right? Has your NETs been graded yet or are you still waiting for basic information?
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u/radarscoot 3d ago
They'll do the pathology after my surgery in a few weeks. From my (lack of) symptoms and imaging they believe these will be well-differentiated NETs. Testing shows hormone production in the high-normal range. The Krenning score is 3-4 so if the surgery can't get everything or they recur they are good candidates for treatments. It has metastasized to at least one lymph node in the mesentery that will be removed. That lymph node shows signs of having been infected long ago (calcification, tethering, etc) so I may have been growing these for a while.
I have been fortunate that these tumours were found incidentally because of my annual MRIs to watch for uveal melanoma metastasis. Since I have had no symptoms, the situation could have ended up being a lot worse once they found it - if they ever did.
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u/MisssyHart 4d ago
Hugs to you! I am followed for a nevus near my optic nerve due to risk of melanoma. I’ve had it for at least 18 years. I was diagnosed with a pNET this year.