@davod , You're very welcome, and I hope something in there "pans" out (pun intended) as helpful.

Regarding the genetic tests: Unless you've already had a tumor biopsy with tissue available, your immediate options are limited to the "basic" blood tests. Both types take several weeks to process, so the sooner you get them done, the sooner someone can consider action based on the results.

The germline/hereditary tests are usually ordered by an oncologist or genetic counselor, and the somatic (environmental/spontaneous) mutation tests are usually ordered by an oncologist. In both cases, the doctor doesn't have to see you to get it done, only to discuss the results afterward. Their office can simply call the test providers (Invitae, Guardant, Tempus, Natera, etc) and have them send out a nurse or a phlebotomist; they will come to your home or office with the appropriate kit, take your blood on the spot, and FedEx it directly to the lab for you.

So, before KP is "KaPut" ask your existing oncologist there to order these asap. If they decline because there would be no new action based on it, then you know you're being dismissed. You should still persist in asking them to do it so you'll have the results by the time you're able to get an outside second opinion consult scheduled. If they still refuse, ask your primary care doctor to order the tests (as long as state law doesn't prevent it). Offer to self-pay if necessary, to show them you're serious, but usually there's some form of compassionate assistance financing with the labs.

I also recommend trying to get your CA19-9 level tested at regular intervals in the interim. This will give you an idea what you're up against, as well as a pre-treatment baseline trend that helps you understand later whether the treatments are helping or not. Every 2 weeks would be ideal (IMHO), but not more than 3-4 weeks apart. Your primary care doc can order that as well, and it can be very affordable ($25-$50) if you check sites like mdsave.com and anylabtestnow.com. Just try to be consistent with the intervals and use the same lab every time to provide an apples-t-apples comparison and meaningful trend.

If you find yourself with a truly engaged and caring team, ask if they can do percutaneous tissue testing. With liver and lung mets, there might be really easy access with only local anesthesia. PanCan.org will pay to have this tested for mutations by Tempus. If they get enough tissue, they can also send some to Natera for them to construct a "Signatera" circulating tumor DNA (ctDNA) test to check for residual disease. Signatera is a blood test that looks at your blood periodically and checks for ctDNA that exactly matches the tumor it came from. The amount found is a good indicator of how well you're responding to treatment, and can help inform your decision of whether to continue or not.

As long as you're in for the fight, don't let them tie both hands behind your back! Come out punching, kicking, biting, whatever it takes! 🙂

"Break a leg" as they say. Cancer's leg, not your own!!!