How to choose "next step?" - 1272003

Hi Ron,

Welcome to GRACE. I am sorry to hear of your wife's diagnosis, and I hope that she gets great results from her upcoming scan.

Though all of us who have dealt with a lung cancer diagnosis have felt just as you have, that we want to find the best option for our loved one at any given point in his/her cancer fight, there isn't any one course of action that we can be certain is best. We just need to gather as much information as possible in order to be in the best position to make a good choice. Although targeted therapies have made some of these decisions a bit easier, narrowing some of the initial options, at times a choice must be made from the most promising of those options.

I think a second opinion at a major cancer center, preferably one affiliated as a teaching hospital for a good medical school. The doctors at such facilities tend to be the best-informed regarding the latest research and clinical trials. Survival statistics may not be the best indicator, since they may attract more patients with complex situations who do not fare as well as others.

Good luck with the scan.

JimC
Forum moderator

Hi Ron, Welcome to Grace. I'm very sorry your wife is going through this, though by your questioning I gather she is lucky you are there with her. I've found this blog post to be excellent for anyone especially those already considering a 2nd opinion. It puts the question of why into perspective.

http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…

As for 2nd line treatments, immunotherapy is just FDA approved for treatment but possibly only after chem doublet like carbo/alimta. But I hope she does very well on tarceva for a long long time.

All the very best,
Janine

Ron, I wanted to add (since I suggested next steps) is that if tarceva is ineffectual that it's possibly because of an inherited T790M. a mutation that is often the cause for resistance to tarceva. Usually people acquire the extra mutation while taking tarceva called acquired resistance but a very small percentage of people have it from birth. So if tarceva doesn't work an option may be to test for the T790 mutation, if positive the 3 generation egfr tki may be appropriate.

Odds are that the scans will be excellent. If something unclear or unexpected is found, then referral for a second opinion is reasonable. I would choose a major academic cancer center within convenient traveling distance for you. Sometimes it is helpful to just have an extra physician just to help put everything in context for you. Most oncologists understand that their patients like to learn about their condition from multiple doctors, it is not offensive. In fact, in my experience, most actually appreciate it, because it off-loads some of the burden of answering complicated questions from their busy appointments. Hope this helps.

Ron, A few months back, Dr. West created a decision tree of paths to follow. That was before approval of immunotherapy treatment. Maybe Jim and Janine can point you toward finding that decision tree.