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Hi my name is Gessica and my dad was recently diagnosed with adenocarcinoma 3b. He has been through quite a bit the last couple of years. Shoulder surgery, open heart surgery, shingles, double knee replacement, and now this. Despite all of that, he's remained as active is possible. 

My dad is 63 years old, has 6 kids, and has spent his entire adult life making prosthetic limbs primarily for children. He pours himself into his work and family, both from a places pure love. 

Back in June he had a scan for a reoccurring pneumonia, during which they found a small tumor. They continued to try to treat the pneumonia for months, unsuccessfully. Despite that, they cleared him for the double knee replacement, after which they performed another scan showing the tumor had grown significantly.  Not sure why it took so long but he didn't get a biopsy until this past week ( 01/2020).

My greatest fear is that the delay in his diagnosis has greatly decreased his options for treatment. If I'm being completely honest, I'm really mad about the delay but I suppose that's normal. 

I figured all I could do now is try to be as proactive, supportive, and optimistic as possible. I'm new to this so any and all advice is greatly appreciated. 

 

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Gessica,

Welcome here. Lots of us experience delays in diagnosis. Then we suffer delays in getting answers from diagnostic procedures. Delay seems to be the nature of the lung cancer beast. Here is a summary of my lessons learned during diagnosis and treatment that may be of help to your dad.

The value of this forum is access to people who know about treatment from a patient's prospective and that is important because few physicians have actual experience with treatments and the delay centered nature of our disease. We also have folks who care for lung cancer survivors and they may field your questions on how to help your dad cope. My advice: read in to our disease. Start here then ask questions on the forum.

Stay the course.

Tom

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Gessica,

Tom is absolutely correct about the nature of diagnosis as well as this forum.  That aside, the important thing now is that your father receive a full set of tests that can provide both a strong diagnosis as well as a solid treatment plan.  My coaching to you and your family now is to write down everything you're told, consider the data and ask all the questions you may have about what was found, how it can be treated, alternative treatments and potential outcomes.  You need, or someone, needs to be an advocate for your father at this time.  It is dizzying to hear that you have cancer and often the questions you want answers to the most don't come to you until you are alone in your bed at 3am.  So, take notes, ask questions and don't let anyone give vague answers at any time.  We always need to be participants in our treatment and not just passengers.

Please update us as you learn more about the diagnosis, any genetic testing done as well as the treatment plan.  There are people here with a wide variety of treatments and surely someone will be able to help you.  

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Hi Gessica and welcome here. Being optimistic, proactive and supportive, as you are, is a good start! I have a couple of suggestions. First, be sure your dad gets biomarker testing. This is an advanced kind of testing of the tissue removed in the biopsy. The results of it are essential in planning the most appropriate treatment. Here's a link to some good information: https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer/biomarker-testing. Second, don't get bogged in lung cancer statistics you may find on the internet. There are a lot of brand new treatments for lung cancer that aren't reflected in available stats, and also stats only give averages and can't predict how any individual will do. Third,  hang in there! Lung cancer treatment can be a long and bumpy road and your support will be important to your dad.

Bridget O

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Hi Gessica,

It sounds like your dad has had quite the journey to his lung cancer diagnosis.  Many patients have had similar journeys but are here despite delays, mix ups, etc.  My mom did not have delays in her original diagnosis, but had a delay in her lobectomy because she needed to detox from her rheumatoid arthritis meds prior to surgery.  This delayed her surgery about 1 month (6 weeks total from initial diagnosis).  In that time, her lung cancer (adenocarcinoma, Non-small cell, stage 3a) did not grow or spread. Nor did the delay affect her outcome.  She was NED after follow-up chemo and radiation.  For her 1st lung cancer recurrence, her diagnosis was delayed because her docs did not see the mass.  It took a new pulmonoligist to see it and biopsy it.  The mass was likely growing for 3-6 months prior to finding it.  This delay also did not affect her treatment outcome, she has been NED for over a year.

So, what your dad experienced is unfortunately quite common.  The important thing is that they found it and are coming up with a plan to treat it.  There will be more testing and more waiting, but that is all part of the diagnosis process.  It's normal to be worried or even angry that finding his lung cancer took this long.  I was angry for quite awhile because my mom's lung cancer recurrence was missed.  That anger fueled me to join LUNGevity and take part in these forums, so I did my best to turn it into a good thing.  Here, I found that there is HOPE and it is okay to feel optimistic.  

I am happy your dad has a supportive person like you.  Whatever treatment plan evolves, he will need your support.  

Take Care,

Steff

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Steff, 

Thank you so much for your reply. Your message definitely is helpful, it's always a better feeling knowing you're not alone. 

I'm already on the road to being more optimistic. I realize this whole thing is a process and part of that process is anger. Probably the best thing to do is realize what the process entails and work through it as productively as possible. ;)

Thank you so much for sharing your story with me, definitely gives me hope. I'm definitely looking forward to a plan being in place and I think that my dad is in better hands now. 

With a warm heart

Gess

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