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I'm newly diagnosed . . .
Hi, everyone. I was diagnosed on July 17 with small bowel NET at the ilealcecal valve. I had been having GI trouble for well over a year and someone encouraged me to get a colonoscopy, where it was found, biopsied, and labeled a well-defined Grade 1, Ki-67 <3%.
I have been accepted at Mayo Phx and will be traveling there for my Dotatate PET/CT on 8/6. I will see my surgeon oncologist, Dr. Wasif, for the sugery consult on 8/14.
Thank you, @tomrennie , for welcoming me so far. I'm wondering if my PET results will be on the portal and would that usually be within a day or two?
My cardiologist, who has started a workup on me, believes the NET may be functioning, as do I with many symptoms. From what I've read, if that's true it has likely spread to the liver.
I understand small bowel NETS in particular spread very early and easily, even at Grade 1, though perhaps only to the lymph nodes (and possibly not at all). In my case it seems likely more than that. Most of my reading/research has been on PubMed, but also places like Mayo, Cleveland Clinic, Stanford, etc.
Thank you all for sharing your experience, strength and hope on here!
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@taly My scan results have always shown up in the portal within 24 hours. They have shown up in as little as four hours.
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2 Reactions@tomrennie Oh, that's good to know. So maybe I'll have lots more information by Friday. I'd like that. (I think ...)
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1 Reaction@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.
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2 ReactionsMy 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.
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3 Reactions@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.