Surgery, radiation, prognosis questions about my dad

They do not know the prognosis at this time, everyone responds different to treatment. I was told point blank to my face there is no cure for my lung cancer DNA Gly12Asp. I have been on Keytruda for 4 years due to recurrence 4 months after surgery, so far scans look great. Don't be afraid to ask the questions if your father is okay with it then ask even write them down and take it with you. You are his support system so ask the questions. I will be going off Keytruda and they will not tell me remission or cured he said he don't know, which is an honest answer, cancer is a fickled disease. I wish him well you to

Sorry about your Dad.
You didn't mention if you had checked the doctor's notes on the patient portal.
I know the issue of not getting the answers and information from a Doctor's visit. Usually there is someone who first interviews the patient to update the file and then the doctor comes in. And these visits are really not structured well to extract an update to patient status nor communicate information to the patient when there is a complex situation.
My current solution is to write a careful message asking the doctor the questions I want answered and sending it through the patient portal. Hopefully you are at an institution that has a decent portal. If your Dad is OK with this, I would try that.
In my past career we used to say it takes a long time to write a short memo - meaning one has to think things out carefully to be short. Be brief, professional and to the point in your message to get the best response. The doctor should answer difficult questions and not the support staff.

@supportfordad, you have indeed found a supportive group. I've been here since shortly after my initial diagnosis in 2018, when I was also looking for answers I felt my doctors weren't giving me.

The vast majority of lung cancer is nonsmall cell lung cancer. Treatment options will vary by subtype. For more information, I'd start by asking your doctor what type of lung cancer your father has. There are many subtypes and they're finding more every day, many with their own unique treatment plan.

I'm a huge fan of second opinions. I got a second opinion after my initial treatment plan in 2018 and again after mine metastasized to my brain in 2020. In 2021, I flew to Houston to get a second opinion from MD Anderson, which is one of the best lung cancer treatment centers in the country. Advancements are being made so often that this fact alone is a good reason to get a second opinion. Even is you hear, as I did, "No need to come back. Your doctors are doing everything we would have done. Listen to them." it's very reassuring. There's an old Japanese saying that translates to "All of us are smarter than any of us."

I'm a member of GO2 for Lung Cancer, go2.org, which has a monthly "Raising Hope" webinar over YouTube Live or Zoom where a group of survivors share experiences and support. Last month, they had a guest speaker who was a doctor specializing in improving patient experiences. She admitted that, as a group, they need to do better. She stated that currently, you need to be your own patient advocate, and, yes, the squeaky wheel gets the grease. Doctors really are that busy and pulled in that many directions.

Best of luck to your dad and you. Being the caregiver can be as hard as having the cancer yourself, so remember to also take care of yourself.

Since your dad was just diagnosed, was he given genetic testing on the tumor to see if he has a mutation that can be treated with a targeted therapy drug? That should be part of the testing before coming up with a treatment plan. I have the EGFR growth mutation that caused my lung cancer (and I am taking a daily targeted therapy drug, Tagrisso, that so far, has kept the cancer from spreading. Diagnosed in October, 2018.

Surgical options are stage specific. Most early stage lung cancers and some stage 3 lung cancers are operable. Rarely is surgery an option for a stage 4 patient.

The patients I know through social media, who are on the same protocol as your dad, can predict which will be the good days and which will find them fatigued. They are able o plan activities around them.

@supportfordad, Welcome to Mayo Connect. I have to agree with the others, it's too soon to speculate on a prognosis. We don't know how he will respond to treatment, and everyone is different. Use only trusted sources if you are searching the internet. Try to focus on what you can do to help him. You may need to let your dad know that you have additional questions related to the treatment plan, and side effects. Ask him if it's ok to talk those through at his next oncology appointment with your dad in the room. If your dad objects to talking about prognosis, then respect that decision. Some people are never ready for that conversation. It is often helpful for the caregiver to be able to ask questions focused on treatment and side-effects. It's an overwhelming time for both of you, he may appreciate someone else jumping in and asking those questions. Does he seem open to letting you help him navigate this new world?
I was diagnosed 4 years ago. My first symptoms were related to enlarged hilar lymph nodes. Is he experiencing and/or managing symptoms related to the lymph nodes?

Hi @supportfordad, I hope you saw the helpful and encouraging responses from several members. How are you and your dad doing? When is the next appointment?

Thank you for this. You’re right, they don’t know. We have gotten better about the questions we are asking.
I appreciate you telling me about your situation and hope your scans continue to be great.
Take care.

Thank you for this idea. Yes, he has a patient portal and has used it for some things. I will suggest using it for more in depth questions as well!

Thank you! I will check out the go2.org website and tell my dad. He still doesn’t want a second opinion, but we are asking more questions and getting more information now.
Your story gives me so much hope. 💙 I hope you’re feeling good.