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

@taly My scan results have always shown up in the portal within 24 hours. They have shown up in as little as four hours.

@tomrennie Oh, that's good to know. So maybe I'll have lots more information by Friday. I'd like that. (I think ...)

@taly I am a want to know person, good or bad, so I like getting the results quickly. The portal will have a patient friendly option to view the results. It will highlight most complicated words. You can click on them for definitions/explanations of those words. My only caution is to not over react, good or bad, to the results until to talk to your doctor. Initially, I had completely misunderstood the results a time or two. It made my conversations with my doctors unnecessarily difficult. That's not a good way to start a relationship with a doctor.

My husband sees Dr Sonbal at Mayo Phoenix. He and the other doctors and staff on the net team are excellent. You will be in excellent hands. Feel free tonask any questions. I'd be happy to help.
There are net specific organizations that will provide you with a wealth of information in preparation for your first visit.
http://www.netrf.org
has a patient resources section including a Newly Diagnosed section that will guide you in what to expect and questions to ask at your first appointment. There are also tons of informational videos.
Some additional advice: It sounds like you're being super proactive and that is great. Learn all you can about this disease before your appointment so you can make the most of it. Educate yourself enough to know if what any doctor tells you makes semse. Do not be afraid to ask questions
Be prepared to be your own best advocate regardless of the skill and knowledge of any doctor you see.

@tomrennie That's good to know. I have a friend who is an M.D. who has been helpful in interpreting, too. I feel a lot of trust in Dr. Wasif, though we haven't met yet, which I believe is helpful. I saw somewhere that surgeries are usually something like 3-6 weeks after the surg consult. It feels like it's coming up fast!

@lindabees Thank you for that useful information!

I guess I'm being "saved" from too many hours research with my computer going out and needing to wait for a part. I'm using a library computer right now which allows limited minutes.

I'd rather know all the possible good, bad, & ugly before I get there so I can be more present for the appointment instead of sitting in shock the whole time. (Which, I suppose, could happen anyway ... but I feel preparing at least helps.) If I'm pleasantly surprised, all the better!

We always prepare for the worst but pray for the best.

@taly Learning the medical jargon was like learning a new language to me. It took time to learn what I needed to know, what I needed to be able to look up quickly, and where to look things up quickly. I don't pretend to remember it all. That's why I write down my questions prior to my doctor's appointments. I know that I won't remember them all. The surgery will come up fast in the slowest way possible. Sometimes seconds seem like hours, especially in waiting rooms, and days seem like seconds. It can be somewhat comical at times.

Thank you! Last week I put together a binder with sections "To Do" "To Ask" (with pages for nurse, doctor, etc.) "Medical Communications" which keep track of all phone calls and with whom, and "Records." My 4 YO grandson decorated it for me so it looks uplifting. It's been really helpful. I'm sure it'll build as I find the need. Still waiting for my computer access! I want to be able to look up PET results from Thursday -- and not from a computer in the middle of the public library. 🙂

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