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Has anyone chosen the Watch and Wait and regretted that choice?

Neuroendocrine Tumors (NETs) | Last Active: May 24, 2023 | Replies (42)
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@frogsong

Hi Scott,
I am curious to know about the outcome of your follow up appointment as I too have lymph node involvement. But for me, the tumor board, surgeon, and neuroendocrine specialist all concur that no other treatment is warranted at this point. (My tumor was nonfunctional and causing zero symptoms.)
I am curious to know if they ended up recommending any adjuvant treatments for you?
It seems crazy to me that I am not doing anything proactively, especially since I had lymph node spread(6 of8)😬😬😬
Thanks, and God Bless

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Replies to "Hi Scott, I am curious to know about the outcome of your follow up appointment as..."
augustine777 | @augustine777 | Apr 22, 2023

Hey Frogsong,
They hadn’t heard back from the specialist yet, so they decided not to do any adjuvant therapy. We will see if they hear anything soon.

It seems that sometimes they are saying that they got everything and I should be good to go, and there are times that it seems that we are just waiting for cancer to show up in my liver. I kind of wish we were doing more. I am not sure what therapies they can do when there is no actual tumor.

I am connecting back up with them for a scan in early June. We will see if there is any more information then. I know that there is increased chances of liver metastasis if there is lymph node involvement, but it also depends on whether the tumors are well-differentiated and what grade they are. My KI-67 scores were 8% and 10%. Grade 2 well-differentiated.

Good luck with everything.

Blessings,
Scott

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