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Banana

Scared daughter, and needs advice.

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Hello.

My father was just diagnosed with lung cancer. He is 65 years old, and we are meeting with his oncologist for the first time tomorrow. I am very anxious for my father and what is to come. I just hope there will be treatment options available for him.

He seems healthy on the outside... and had a cough that wouldn't go away. He went to the doctor who saw fluid in his lungs. He was on antibiotics... and when the fluids would not go away was sent to a bigger hospital. This is where we found out that he has lung cancer. 

I am very scared for him and I hope there will be treatment options for him. What types of questions would be best to ask the oncologist tomorrow? 

 

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Hi, Banana, and welcome!  How was your dad's cancer diagnosed?  Was there a biopsy, or are they just working from imaging studies?  Without a biopsy, it isn't possible to stage the cancer or know what kind it is to determine appropriate treatment.  So I think the first questions will be what, exactly, it is he's dealing with.  Lung cancer comes in a lot of "flavors" and the type, stage, and presence of any specific genetic mutations usually are what determine the type of treatment that may be possible, necessary, or appropriate.  Other questions will pretty much flow from there.  

No matter what you are told, try not to get freaked out by survival statistics you may find online.  Those are from people who were diagnosed five years ago (and there are new developments every day with lung cancer treatment), and even if they were current, they are AVERAGES--we have plenty of longtime survivors here who should not be around, according to the stats.  Every person, every cancer is different, even when there are certain commonalities that determine treatment.

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When I was first diagnosed with lung cancer, my sister...who is a cancer survivor...gave me two sites to look on. She said to stay away from sites that guess longevity and other sites that can scare you. You need information. You can google what questions to ask your doctor at each stage of this journey.  I found all doctors were patient and would answer all questions.  Hugs.

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Banana,

Welcome here.  

Questions to ask:  here is a good list.  Questions under the Newly Diagnosed Heading 1, 2, 4, 5, and 6 are suggested at your first oncology consultation.  One question not on the list and important because so many new treatments for lung cancer have been introduced is: "if my tumor is to be biopsied, will you ensure it is tested for biomarkers for targeted therapy and PD-1 and PD-L1 expression for immunotherapy?"  A biopsy is generally required before most treatment plans can be designed.  A biopsy tells the oncologist what type of lung cancer your dad has.  Here is information on lung cancer types (Read Classification by Histology).  

Here is an essay I wrote years ago that has helped many newly diagnosed.  It is a summary of lessons learned during my lung cancer diagnosis and treatment period.  One important take away not in the essay is I was diagnosed with late-stage lung cancer in February 2003.  If I can live, so can your father.

Moreover, new and very effective treatments available now that when I was diagnosed.

You'll likely have questions after the consultation and if so, this is the place for answers.

Stay the course.

Tom

 

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Banana,

Lung cancer diagnoses can definitely cause worry, concern, and questioning the future. We've all been there whether as a patient or a caregiver/family support member. My mom was diagnosed at the age of 60 with non-small cell lung cancer. At her first bout of lung cancer, I was naive in how persistent lung cancer is. I was positive her original plan of attack would be her only battle. Unfortunately it was not and she is now battling a recurrence. When they found her recurrence, I was heartbroken and desperate to find something to help me just get through the day without constantly breaking down. That's when I found Lungevity's forums. I had similar questions as you have and the members here were very supportive and helpful. Definitely take a look at the list that Tom suggested. I used these questionnaires to help myself stay on track and gather my thoughts during her initial doctor appointments. Luckily my mom's oncologist also had notes about her PD-L1 testing and suggested treatment plan, but that often does not happen, so be prepared to take notes, lots of them. For burning questions we had afterward, we used the clinic's online medical chart to email the docs our questions. It was nice to have their replies in writing so we could refer back to them.

And finally, my best suggestion is to take this one step at a time. The diagnostic and staging process can take a bit of time because of all of the testing needed. All of these tests are worth the wait because they can open up the many possibilities of treatment options for your dad - something that wasn't available for my mom just 2.5 years ago. The treatment options available today seem to be so much more effective and helping people to live much longer. So, there is HOPE for your dad! Lung cancer is not a definitive death sentence for all who are diagnosed like it has been in the past.

Please feel free to use these forums to vent, as questions, share successes, etc. We are here for you every step of the way.

Take care,

Steff

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Hi Banana and welcome here.  I try to respond as soon as possible to newcomers posts to this forum. I'm sorry I missed yours until nowa1 The responses that you got from  Laurel, LexiCat, Tom and Steff cover everything I would have said, and more. So I'll just say hang in there, ask whatever questions you have, and let us know how we can support you.

Bridget O

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Thank you so much for your responses!

After reading your responses and meeting with the oncologist I feel more hopeful. Thank you.

So far, all we know is that my father has NSCLC, and that he is stage IV because the way we found his lung cancer cells through a pleural effusion. The oncologist has mentioned that more tests need to be run before we can even start treatment. So we are in the process of getting more tests done. 

Thank you for responding and giving my family hope. 

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Hello again. 

I am writing to see if I can gain some knowledge from your experiences...

Update: My Dad's CT and MRI has shown that his cancer is mainly in his lungs/chest. They see some activity in his hips, but there are no other sites that it has spread to. 

The next step for my Dad is getting a biopsy through a VATS procedure. The oncologist has mentioned that he is looking to see what targeted therapies or other treatments he can get based on the biopsy. What types of information can they find from the biopsy? Are there certain treatments you would get based on blood tests? 

What is the recovery time for VATS? Will he need to be hospitalized? 

I am sorry to be asking a bunch of questions. Feeling a bit anxious for my father... and hoping I will be able to have more time ... 

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Hi Banana,

I think you will find answers to some of your questions on the main Lungevity website under Lung Cancer 101. Here's the link: https://lungevity.org/for-patients-caregivers/lung-cancer-101.Look especially at the sections on Biopsy and Biomarker testing. From the biopsy they will get basic information, such as the type of lung cancer ( smal cell or non-small cell and for non-small cell whether it's adenocarcinoma, squamous cell or large cell ). Then they will send a sample from the biopsy for biomarker testing. This will show additional information about the tumor which will help determine whether he's a candidate for targeted  therapy or immunotherapy. (Biomarker testing is sometimes called molecular testing or tumor genetics, so if you read or hear these terms, know that it's the same thing) You'll find  more information about all of this iin  Lung Cancer 101 under Diagnosis and Staging, and Treatment. It can all seem pretty complicated and it is! If you read it and have more questions, come back here with them. Don't be sorry for asking questions! That's what we're here for.

I think any kind of VATs requires hospitalization because general anesthesia is used. I would expect that recovery time will depend on how much lung tissue they take out, and maybe his general health .  I had a whole lobe (1/3 of my right lung) removed. I was only in the hospital overnight, which is the shortest time I've heard of for anybody having a lobectomy.  If they can biopsy by taking out a small wedge, the surgery might be "smaller" . These are some good questionf for the surgeon.

Let us know what other questions you have and how we can support you. It's completely normal to feel anxious for your father. Cancer is anxiety producing! Hang in there, Banana.

Bridget O

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Hello. 

My father will be starting Tagrisso. Does anyone have more information about this? We will be seeing the oncologist on Monday... does anyone have suggestions on what questions to ask? 

I only found out about the medication through the pharmacist. Any guidance on what I should ask for would be great. 

Glad that my Dad will finally be starting treatment, but anxious at the same time. 

Thank you in advance for your help. 

 

Banana

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