Asking the Right Questions
Do you find yourself in limbo on which questions make sense to ask with a lung cancer diagnosis? It can depend on what stage you may be on your journey. Does your doctor allow you to engage with questions or do they take on an authoritative role while you follow?
When I interviewed doctors for my medical care team, I made sure they are patient centered and know to include me in all decisions, etc. My doctors from my original diagnosis 24 years ago retired, it took quite a few interviews at multiple cancer centers to put together my medical team and so far I am happy with them. Good discussion! ~ Best, Alisa
I'm happy you put in the work in reviewing your options. In most scenarios, many patients have to move the needle on their own to get the best care they can get, rather than what is available. Best! 😀
My tumor was found accidentally while retiring on a seasonal basis in Thailand. My USA region was being hit hard by the second wave of covid. I listened to NPR coverage of how my own USA hospital system was being inundated. So I decided to have my surgery and chemo done in Thailand.
I was very fortunate in receiving care over and above the standard timing, biomarker testing, scans et al i could have expected in the USA.
Only one big problem - my cancer relationships were with Thai doctors and i obviously needed a maintenance team in the USA.
No one knows about cancer until diagnosis. My community healthcare system was not a certified cancer center. Luckily i connected to an advocacy group that focused on one of my biomarkers and then went on three “blind dates” with oncologists in three major east coast hospitals.
One was not even polite. He told me I was “cured” and then charged me for the phone consult. The second suggested i could “try” tagrisso even though there is no approved targeted therapy for my unique EGFR combo. The third just happened to be the principal on a trial with advanced stage patients with my unique combo. And as I told her, at least I don’t have to explain my combo to you. That was 2 years ago.Fantastic you had such good care in Thailand, I can imagine how hard it was to change care teams, but glad you finally found one in the US with just the background you needed.
Scary that all are not knowledgeable about treatments and mutations, but there has been more emphasis on it lately so hopefully more lung cancer docs are getting up to speed. Wishing you all the best! ~ Alisa, Lung Cancer Team Patient LeaderIndeed wishing you the very best on this journey!
Yes, sometimes. My questions are mostly related to what should we be doing at this point, like what scans are best (brain CT, PET, etc.) other doctors I should be seeing for managing treatment related side affects (rheumatologist, nephrologist, ENT, etc.) because I was diagnosed in October 2019 finished with Chemo and radiation February 2020 and I am considered stable (so far) last brain CT was in Dec. 2023 upcoming Chest/abdomen/pelvis CT later in April. Do we go from every six months having scans then to once a year and then what? Because we have so many permanent side affects not just from the disease but it's treatment I always worry what is expected and what is a red flag?Hi Vikkr, sounds like you already know what questions to ask to stay proactive. It's good to be involved with our treatment plans, but I wish we didn't have to be our own advocates, but it seems oftentimes we do. Thanks for bringing up some important questions/issues. All the best! ~ Alisa hearing your proactive push makes me smile...Awesome job! You're asking the right questions- keep at it! Best
Checking with my doctor because for some reason she ordered just a chest CT with contrast, normally it is Chest/abdomen/pelvis with contrast, this time no abdomen and pelvis along with it. Last brain CT in 2023. I see her 4/26 for follow up.
I believe it is always good to question. Please let us know what she says. Good luck on the 26th! ~ Alisa
