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new to here - my dad is almost (?) diagnosed


atlanta1

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Hello everybody - I'm so glad I have stumbled my way here. My dad began having pain in his back in August, after being treated for torn muscle, he was referred to pain doctor (Sept). Pain doc ordered bone scan - showed lesion on rib...referred to oncologist. Oncologist ordered CT scan - showed mass on liver - it was biopsied and results say non small cell adenocarcinoma - which has led the oncologist to review further a small spot in his right lung that previously didn't cause any excitement during the initial testing. During the middle of all this - a couple days after the liver biopsy my dad had a blood clot go to his lungs so that was a few days in the hospital. He had a pet scan yesterday. My question is - is it normal that these seemingly endless rounds of scheduling, tests, etc etc seem to go on forever before you get a definitive diagnosis and treatment options? Maybe because his only symptom is pain? He has lost some weight - he and my mom are nearly over the edge with worry. And do doctors ever talk to each other?? So far this has been extremely frustrating and I'm sure we have only scratched the surface of this journey. Any advice on handling the health care system would be greatly appreciated!

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Hi Atlanta1 - welcome! I'm afraid I don't have much practical advice (I know the others will) but I wanted to welcome you and simply empathize with your frustration. We are in a similar situation with my mom. In fact, she is scheduled to begin chemo the week after next but we still do not have a diagnosis from the biopsy they took during a bronchoscopy last week. Go figure!

I have been reassured that these early weeks of testing and questions and not knowing can be one of the most difficult parts. I believe it! But I for one have found great comfort in scanning these boards in the meantime, and hope that you do as well. Glad you found us!

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Hi and welcome. Yes, I'm afraid in the beginning, the tests do seem endless. It's so frustrating because you want to get an answer and begin treatment as soon as possible. All of the tests they are doing will help the Dr.s come up with a plan that works for your father. Surgery can be an option (one I wish we had) but they won't know until they can see exactly where his disease is. I flew home for my mom's first evaluation appointment. Looking back and comparing notes with others that have gone through this, all of her testing was completed relatively quickly (about 3 weeks)Believe me, it felt like FOREVER. I hope they can come up with a plan for your Dad soon, and start fighting this disease. I wish you the best as you begin this journey. We are all here for you. Shelley

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I'm afraid Shelley is right. In the beginning you feel like all they do is test, test, test. It took about 6 weeks to get a definitive DX for my mom and I've learned that was pretty quick.

The one thing is that the testing will help to determine the best course of treatment. It is important to know the type,location and size of the tumor(s) so it can be treated most effectively.

Best of luck and let us know.

Susan

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