A12 6./ Research has yielded a host of treatment options that weren’t available to our fellow NET patients even a few years ago. We have miles to go before we sleep, but we have also come so far.
In new understanding lies progress.
In progress lies hope.
#PancChat
@ShaalanBeg@drallysonocean PRRT is definitely a game-changer! But I think there is still a prominent role for surgery in metastatic pNET - as PRRT may not result in long-term control #PancChat
A10 4./ In fact, I think delayed or mis-diagnosis is all too common in NETs. Not only does it lead to finding tumors at later stages, but I believe it can also engender mistrust of the medical community, which is truly a tragedy. #PancChat
@drallysonocean Yes, agree! Also, low-grade (ideally grade 1) PNETs with disease stability on treatment, especially functional NETs, may benefit from debulking surgery (even if the NET can't be completely resected)
A9 5/. there is even a putative role for combining the two types of PET scans to generate a 'NETPET score', i.e. looking for tumor avidity for both FDG and gallium-68 DOTATATE, or “dual tracer” #PancChat https://t.co/kTkAFKHzZG
A9/2: Uptake on this second PET scan (or octreoscan if DOTATATE PET isn't available) is needed for PRRT (radionuclide therapies eg Lutate) to be effective. Both scans at the same time might be useful in tricky cases #pancchat
A9/1: "Normal" PETs (FDG PET) look for faster-growing tumors and may be negative in low-grade tumors. 68Ga-DOTATATE/DOTATOC PET scan looks for low-grade tumors. This scan is more accurate than the Octreoscan. #Pancchat
A8. Yes, there are lots of trials going on for PNETs! Even though it is harder to do randomized trials (because PNETs are uncommon and those trials need lots of patients) we need new options for this often-neglected disease #PancChat
A8. 1/. https://t.co/phTVYlX9ww is a terrific search engine (think of it like Google just for research) that, in my opinion, has become a lot more user-friendly in the past year, for docs and patients alike. #PancChat
A7. Treatment is totally different for PNETs. If surgery is not possible, low-grade tumors may be treated with somatostatin analogs (injections), targeted therapies (tablets), PRRT or other procedures. High-grade tumors are often treated with chemotherapy #pancchat
PNETs can be
'functional' and cause: diarrhea, flushing, low/high blood glucose, wheezing
or
'nonfunctional' and cause compression/mass effect
#PancChat
@PanCAN The relatively small number of PNETs compared to adenocarcinomas explains why we need to increase NET awareness amongst patients and carers #PancChat@UnicornFndtion
@Aiims1742@PancPathologist We have learnt so much about the genetic changes behind PNET, even in the past year - but so much progress still to be made..
#PancChat Although some PNETs are very slow-growing, others (high-grade or Grade 3 NETs) do behave aggressively and have a prognosis similar to panc adenoca. The grade is vitally important in determining prognosis and the best treatment options.