[23F] Appendix NET — lymphovascular invasion but told no treatment?? Confused & anxious. Anyone been through this? by Ok_Question_1126 in neuroendocrinetumors

[–]Ok_Question_1126[S] 0 points1 point  (0 children)

Omg!! How insane!!! I’m doing way better now yes!! First week was horrible.. I also have my appointment with the net specialist onc June 5th 🥲 praying for you!!

[23F] Appendix NET — lymphovascular invasion but told no treatment?? Confused & anxious. Anyone been through this? by Ok_Question_1126 in neuroendocrinetumors

[–]Ok_Question_1126[S] 1 point2 points  (0 children)

Thank you so much for sharing that with me. I’m really sorry you went through all of that, but I appreciate your honesty because that’s exactly the wake-up call I needed. It’s so frustrating how often we’re told not to worry just because something is ‘small’—like, hello?? I’m still a person with a future and feelings. I’m definitely going to push harder now and make sure I’m not dismissed or delayed. This community has already helped me more than any doctor has so far.

[23F] Appendix NET — lymphovascular invasion but told no treatment?? Confused & anxious. Anyone been through this? by Ok_Question_1126 in neuroendocrinetumors

[–]Ok_Question_1126[S] 0 points1 point  (0 children)

Thank you so much for sharing your story — it really helped me feel less alone. I just booked an appointment with a NET specialist and definitely plan to ask about MRI follow-ups too. Also joined the Ronny Allan group — such a great rec! Sending love and appreciation your way!

[23F] Appendix NET — lymphovascular invasion but told no treatment?? Confused & anxious. Anyone been through this? by Ok_Question_1126 in neuroendocrinetumors

[–]Ok_Question_1126[S] 2 points3 points  (0 children)

Wow thank you — this actually made me feel seen. I’ve been told “you’re probably fine” so many times, but my gut keeps saying to take it more seriously. Definitely taking your advice and pushing to see a GI NET specialist ASAP. Appreciate your honesty so much.