1. < Lung Cancer

Surgery, radiation, prognosis questions about my dad

Posted by supportfordad @supportfordad, Apr 20 6:26pm

Hello, my dad was recently diagnosed with stage IV non-small cell lung cancer. He had his first chemo/immunotherapy treatment (carboplatin, Alimta, Keytruda) a few days ago and is handling it well. I have gone to his doctor appointments with him and I am not crazy about how the doctor is approaching the conversations. My dad asked if he can fight this and the doctor told him he has seen cases of remission. That is the only information regarding prognosis. I would like to ask a lot of questions, but I’m honestly afraid of the answers and my dad hearing them. Right now he believes he can fight this and I want him to stay in that mindset. I want to ask about surgical options, radiation, as well as prognosis. After the first doctor appointment, I asked my dad about getting a second opinion, but he would prefer not to.
I am left reading and rereading his visit notes and test results and using Google as my guide. Not the smartest approach I know!
He has “Mediastinal and hilar lymphadenopathy: Rather extensive, large size. Due to lung cancer metastasis.” Brain MRI was negative thankfully. The tests that show whether or not he can have a targeted therapy were all negative.
I am here to see if anyone had surgery is a similar situation?
Should I just ask the questions at the next appointment?
I have seen some conversations here that people have been on Keytruda for a long time which is encouraging!
Any other words of wisdom are welcome.
Grateful for a place to share.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

supportfordad | @supportfordad | Jul 6 8:49am
In reply to @56899t52 "Since your dad was just diagnosed, was he given genetic testing on the tumor to see..." + (show)
@56899t52

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.

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Yes, he had the testing, but no targeted therapy options exist “yet”. 🙂
So happy to hear your cancer isn’t spreading. Thank you for sharing.
Take care.

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supportfordad | @supportfordad | Jul 6 8:51am
In reply to @denzie "Surgical options are stage specific. Most early stage lung cancers and some stage 3 lung cancers..." + (show)
@denzie

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.

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Thank you! He definitely likes the steroid boost he gets during his infusion visit. 🙂 That gives him some good energy for a few days!

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supportfordad | @supportfordad | Jul 6 8:59am
In reply to @lls8000 "@supportfordad, Welcome to Mayo Connect. I have to agree with the others, it's too soon to..." + (show)
@lls8000

@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?

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Hi Lisa,
Thank you for this information. I read it when you first posted it and have taken your advice. I talked to my dad about how he wanted my help. He has since been asking more questions during the visits. If his doctor says something that I don’t understand I ask for clarification since my parents are probably wondering, too. It has been better.
The treatments are causing fatigue, but he has been a trooper. Not an easy one to keep down.
Thank you for sharing where you are in your cancer diagnosis and treatment. It definitely helps knowing how others are doing.
🤍

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supportfordad | @supportfordad | Jul 6 9:06am
In reply to @colleenyoung "Hi @supportfordad, I hope you saw the helpful and encouraging responses from several members. How are..." + (show)
@colleenyoung

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?

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Hi Colleen, thank you for checking in. It took me a while to log back in here. I think I’m finally through the shock phase.
I so appreciate all the replies, helpful ideas, and those who have shared their own experiences.
My dad has had several appointments since my initial post and he’s getting answers and hope. We definitely had some miscommunications at the start. He was expecting four treatments and done. Looking back, that seems unrealistic, but again, we were in shock. He knows it’s a long road now.
Thank you again.

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1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Jul 8 1:47pm
In reply to @supportfordad "Hi Colleen, thank you for checking in. It took me a while to log back in..." + (show)
@supportfordad

Hi Colleen, thank you for checking in. It took me a while to log back in here. I think I’m finally through the shock phase.
I so appreciate all the replies, helpful ideas, and those who have shared their own experiences.
My dad has had several appointments since my initial post and he’s getting answers and hope. We definitely had some miscommunications at the start. He was expecting four treatments and done. Looking back, that seems unrealistic, but again, we were in shock. He knows it’s a long road now.
Thank you again.

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@supportfordad, Misconceptions during the initial diagnosis stage are very common. We can't know everything right up front, and the doctors can't know everything either. Patients react to treatments differently. I'm glad that he's settling into his treatment schedule and seems to be tolerating the treatment fairly well. Hugs.

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