I'm newly diagnosed . . .small bowel NET at the ileocecal valve

I had a recent total knee replacement with Mayo JAX. I had also been consulting with the Oncology Department as I had active Merkel Cell Carcinoma treatment going alongside immunotherapy treatment with the Veterans Hospital. In the kneecourse, I had MAYO MRIs and x-rays, and most times, I was able to see results from the first test before I had the second test. During my cancer treatment, my MAYO consultation notes were often posted before I got home after the office call. A PET-CT is a new one though, not experienced in that. I pray you have a similar satisfaction level as I had with the timeliness of reports.
As @tomrennie says above, the MAYO patient portal is very cool and will explain terms. I sometimes would copy the whole radiology report and drop it into a duckduckgo AI browser (a bit more private than google or other browsers), and it would actually "translate" the whole thing to an understandable level. Of course, recognize that some of these AI tools 'hallucinate' or get things flat out wrong, so the conversation with your doc is critical.
Please know my family and I pray for all of our patients here and know this is a good spot for support!

Sam K

@samueljknapp Thank you, Sam. I would like to have the week to digest the results before going to see the surgeon and getting the real scoop. It will be helpful in formulating questions.

You and others here are in my prayers and heart as well. <3

@taly Good luck with the scan tomorrow. Please let us know how it goes, ok?

@tomrennie Thank you so much. I will. I figure I'll know the basic results of what, if any, spreading there is beyond the one site by Friday.

I've arranged to meet with my kids Friday evening after my 4YO grandson is in bed so we can talk about it. I'll be really happy if it's a Stage 3 or less. But the symptoms point to spread in the liver, so I'm trying to be prepared for that. It's a conversation I'm really dreading ... unless it's good news.

The gastro practice that found it didn't know much about NETs. They told me since it was Grade 1 it would not affect my lifespan at all, just simple removal and move on almost like it never happened. So that's what I first told my kids. Later, I kind of clued them in that I'd learned more info since then, but . . .

I, and they, can take heart in the fact that these small bowel tumors are slow growing, even if they metastasize, and that I probably have some years ahead of me. I think it will be helpful for me, and maybe them, to know what it is we're adjusting to. And a week later with the surg consult, what the scope of the surgery is. It's all a little nerve wracking at this point. And living alone makes it a bit more so. I'm so grateful for all of you here and keep you in my prayers!

@taly I know it's impossible, but try not to overthink it. At this point, the results will be the results. You are far more informed than most people are leading up to doctor results conversations. You should take some solace in that. I usually don't get nervous until after the scan. Like I said previously, I just want the results good or bad. I'm pretty sure you know what that feels like at this moment?

@tomrennie Thank you so much. I will. I figure I'll know the basic results of what, if any, spreading there is beyond the one site by Friday.

I've arranged to meet with my kids Friday evening after my 4YO grandson is in bed so we can talk about it. I'll be really happy if it's a Stage 3 or less. But the symptoms point to spread in the liver, so I'm trying to be prepared for that. It's a conversation I'm really dreading ... unless it's good news.

The gastro practice that found it didn't know much about NETs. They told me since it was Grade 1 it would not affect my lifespan at all, just simple removal and move on almost like it never happened. So that's what I first told my kids. Later, I kind of clued them in that I'd learned more info since then, but . . .

I, and they, can take heart in the fact that these small bowel tumors are slow growing, even if they metastasize, and that I probably have some years ahead of me. I think it will be helpful for me, and maybe them, to know what it is we're adjusting to. And a week later with the surg consult, what the scope of the surgery is. It's all a little nerve wracking at this point. And living alone makes it a bit more so. I'm so grateful for all of you here and keep you in my prayers!

@tomrennie Thank you so much. I will. I figure I'll know the basic results of what, if any, spreading there is beyond the one site by Friday.

I've arranged to meet with my kids Friday evening after my 4YO grandson is in bed so we can talk about it. I'll be really happy if it's a Stage 3 or less. But the symptoms point to spread in the liver, so I'm trying to be prepared for that. It's a conversation I'm really dreading ... unless it's good news.

The gastro practice that found it didn't know much about NETs. They told me since it was Grade 1 it would not affect my lifespan at all, just simple removal and move on almost like it never happened. So that's what I first told my kids. Later, I kind of clued them in that I'd learned more info since then, but . . .

I, and they, can take heart in the fact that these small bowel tumors are slow growing, even if they metastasize, and that I probably have some years ahead of me. I think it will be helpful for me, and maybe them, to know what it is we're adjusting to. And a week later with the surg consult, what the scope of the surgery is. It's all a little nerve wracking at this point. And living alone makes it a bit more so. I'm so grateful for all of you here and keep you in my prayers!

@taly

These discussions are so difficult.. My anticipation facing the last one was so high, but went better than I thought. Feeling for/with you. Progression is so difficult to determine and when I am with them the adrenaline gets going and I look so good that the reality of the words do not match what their view of me nor my vitality. Will be thinking of you tonight.. In this together.

@taly
Hi Taly. Happy to share my experience as my initial NET was also in my iliocecal valve. That was 11 years ago! ( and it was stage 4)- so please take some comfort that NETs in GI system are slow growing and manageable. I had surgery to remove that initial tumor- found I had multiple lesions throughout colon and lymph nodes ( all removed in 2015). Have had 3 subsequent surgeries - tumors are now in my liver- normal progression) - many different types of treatments - ( including the surgeries). Bottom line- have maintained a nearly normal life over past 11 years - Worked full time ( just retired!) - stayed very physically active - which I think matters! Changed diet a bit ( think bland”!) -as my biggest issue has been managing GI issues.
Stay positive! Quality of life can be great!
Will keep you in thoughts and prayers!

All the best!