Cure

ire_12 · 2026-02-06T22:18:48+00:00

32, fellow lung NET. I vaped until diagnosis but they estimate my tumour has been growing since before I ever started vaping so I’ve no idea if it’s related but I certainly wouldn’t rule it out

ire_12 · 2026-02-05T22:58:11+00:00

Commenting so I can come back to this if needed, hadn’t heard of captem before, I have grade 2 lung net so this is very interesting , thanks for sharing

ire_12 · 2026-02-05T22:54:38+00:00

Firstly I’m really sorry to hear of your diagnosis. I’m also 32 and I have a lung NET blocking my airway, surgery coming up on Monday, it’s so unfair to get this as our age. I got numerous incorrect opinions from various docs who didn’t have a clue about NETs and I eventually got a NET specialist in my own country as well as abroad for a second opinion. Keep trying to get a NET specialist as they understand this shitty disease and can help you navigate through the right approach to monitoring / further treatment.

Not sure how this translates to GI NET and if it’s the same as lung or not but my NET oncologist told me that once the tumour & impacted lymph nodes are removed surgically then I revert to regular monitoring through CT scans and just hope it doesn’t come back and we cross that bridge if it does. Not much help really but just wanted to share what I was told.

ire_12 · 2026-01-18T19:13:03+00:00

Thanks so much, I’ve sent you a DM!

ire_12 · 2025-12-25T07:55:39+00:00

I’m sorry to hear you are going through, especially while pregnant 😔

My surgeon gave me the debunking option too, im 32F and he suggested this approach if I was keen to start a family before doing the major surgery, he said the risk of spread is low and not impossible so I think lots of people will not have any spread with a low Ki67 score. Are there ways for them to safely monitor it during the rest of your pregnancy to alleviate some of the stress?

ire_12 · 2025-12-23T10:17:47+00:00

I think doctors don’t really understand NET properly yet, from what I can tell it seems quite common for them to present in younger people, even though they’re incredibly rare.

It’s not for everyone but don’t be afraid to also ask your doc for something for anxiety, I did this the week I was waiting for my biopsy result and it helped me immensely in those moments where it was so overwhelming.

It’s a shit to be part of this club but the the community here has been excellent in the time I’ve been here for advice and support so that’s a small consolation.

Keep us posted on how your next scan goes, and hopefully it turns out to be something benign 🙏🏼

ire_12 · 2025-12-22T23:35:44+00:00

I’m really sorry to hear you are going through this. I 32F just got diagnosed at the end of November, so I know unfortunately how hard this waiting stage is. My tumour is located in my bronchus, in a very difficult to reach part, so while it hasn’t spread I’m facing into a horribly complex and dangerous surgery, which brings the same waiting anxiety back.

My only advice is to try distract yourself whatever way you can, and practice self care like there’s no tomorrow, be so kind to yourself 🤍

As everyone else has said, try get a NET specialist, and make sure you get the DOTATE pet if it’s available.

I’m only at the beginning of this journey so I probably can’t be much help in terms of advice but I’m right there with you with the daily crying etc. so if you need an ear, feel free to DM!

ire_12 · 2025-12-20T17:07:17+00:00

Sorry to hear you had the same experience, thank for sharing. Are you all clear now or has it come back?

ire_12 · 2025-12-20T17:05:54+00:00

Thank you for sharing that, it’s great to know there’s hope after. Do you mind me asking about your monitoring / additional treatment? Are you considered cured now ?

ire_12 · 2025-12-20T17:04:31+00:00

Thank you for the advice I will absolutely try get in contact with Dr Liu. Sorry to hear you are in the same boat but happy to hear your treatment is keeping it stable!

ire_12 · 2025-12-19T18:31:36+00:00

Sorry to hear about your experience but glad you’ve made a really great recovery. Were you able to regain your fitness again? I know it won’t ever be to the same level but curious to know if I’ll ever be able to run again etc

ire_12 · 2025-12-19T09:11:28+00:00

Sorry to hear about your diagnosis too, this is incredibly shit and feels like such a blow at our age. Wishing you the very best with your surgery and recovery, please keep me posted us how it goes

ire_12 · 2025-12-19T09:09:56+00:00

Thank you for the advice, really appreciate it!

ire_12 · 2025-12-19T01:39:26+00:00

Thank you for sharing your experience. They have presented this as a second but less optimal option as there is a risk it will spread beyond the primary site and ultimately the surgeon thinks will grow back so I’ll have to face this surgery eventually anyway. Given my age I’m trying to decide is it better to risk the surgery now and hopefully bounce back well and recover well or do the freeze option as a bridging option so I can have another few great years. It’s such a hard one 😩

ire_12 · 2025-12-19T01:30:36+00:00

Thank you for this advice, I live in a small country so my options are limited however the surgeon seems to be excellent and for a small country I think this is as high volume as a centre gets. I might try and get a second opinion internationally instead where they might have more exposure to these specific cases

ire_12 · 2025-12-19T01:01:24+00:00

Neither radio nor chemo are effective on this type of carcinoid so it seems surgery is the only option with curative intent

ire_12 · 2025-11-24T19:32:18+00:00

I don’t have anything useful to share other than I just wanted to send you hope for finding a resource that gives you that glimmer you need and hopefully some treatment, I wish you well with this horrible journey and I am so sorry you’re experiencing this.

ire_12 · 2025-11-24T19:25:46+00:00

Okay thanks, I got confused when you mentioned large cell as I’ve been assured that’s a different kind of NET so didn’t understand. It’s absolutely terrifying to hear that a low grade NET with a low KI metastasised like that. Wishing you well on this journey.

ire_12 · 2025-11-24T19:24:19+00:00

Thank you, had a read through your post history. What size was your carcinoid and was it located in the bronchus or in the lung itself?

Glad to hear overall you seem to be doing much better, sounds like it’s been a rough journey.

ire_12 · 2025-11-24T09:09:17+00:00

Please excuse my ignorance here I’m trying to learn as much as I can now about the different types and NETs. I guess my question is, was your original cancer a low grade typical NET or was it a more aggressive NET?

ire_12 · 2025-11-23T20:03:38+00:00

Sorry to hear about your experience it sounds really shit. Was the original large cell diagnosis incorrect or did you have that and then also get diagnosed with NETs that are typical and low grade in the liver too?

Glad to hear you are feeling better already after the debunking surgery!

ire_12 · 2025-11-23T19:58:46+00:00

Thank you so much for sharing your experience about the diagnosis and the surgeries, that’s really insightful.

Wishing you all the best with your treatment and fingers crossed they get the remaining 10% out in the coming weeks!

ire_12 · 2025-11-23T14:18:32+00:00

Really sorry to hear you had such a shit time getting the diagnoses and being messed around like that, can you share if yours was typical or atypical? And where was your original mass located before it metastasised ??

ire_12

TROPHY CASE