[SoCalGal]

Thanks for starting this thread. My two and a half cents:

As far as brain scans, if you are early diagnosis, it seems like ONE baseline PET/ct and brain MRI is reasonable to make sure your disease is "just" local, even with node negative, it seems reasonable for your onc to stage you for certain this way. Some docs also do a bone scan - still don't know why they need bone scan AND Pet/ct.

IF YOU ARE METASTATIC or have ANY type of recurrence, after completing initial treatment, I would insist on another PET/ct and BRAIN mri for safety sake. YOU DON'T WANT TO WAIT FOR SYMPTOMS OF BRAIN METS. Find those crappers before they find you.

Also, make sure your surgeon sends your tissue sample/biopsy for an in-depth molecular profiling - some places have very specific rules for submitting fresh tissue, they have kits, depending on your location. Your ONC should be familiar with this VITAL step!!

Lastly, I would recommend starting a notebook, with dividers, and BE METICULOUS in getting copies of all of your test results, copies of scans, and flow sheet to show treatment records. I was so glad I did this from the beginning, and I am still amazed at how much I forgot about those early years of hell

As a 20 year survivor, including 8+ year stage 4, there is no way a doctor can review my charts and give any opinion, wether it be a first opinion or second opinion. I keep a word doc that I call my "patient overview" - all pertinent info from 20 years on 4-5 pages. That way, I can easily print out a copy or email for second opinions. Similar to my signature, line item style, year by year with only highlights. Then, if a doc wants to see a specific report, I have my notebook handy with those copies.

Well that's it for now. Thanks again for compiling!!