I’ve need help understanding what the Doctors are telling me$

Posted by fiddlershere @fiddlershere, 20 hours ago

Sup Boys and girls.
I’m hoping youse guy can help me out a bit. I have a nine or 10 MM nodule in my right lung. I had a CAT scan scanned times two and a PET scan. Subsequently I went for a bronchial something with an ion robot and the did not remove enough tissue to test properly. Any samples that they were able to test said “no apparently malignant cell” so I said yahoo! Well I went to my Brigham & Woman’s Thoracic surgeon who advised me I would be getting a cat scan on Wednesday, a visit with him on Thursday and they’re going to to the operating room on Friday for Surgery. I think I will get three incisions for tubes and pull out the nodule and a “wedge” whatever that is.
My only concern (That’s BS) is that I haven’t even received a diagnosis of actually cancer so what are we doing? Wouldn’t another bronchial robot couple hour procedure thing be much less invasive than outright surgery? It just seems to me that they just should repeat going down my wind pipe and taking enough meat to do a proper biopsy prior to any surgery. Would they as a matter of course handle things in this way prior to a diagnosis?
What I would really like is a book translating medical terminology into something a relatively bright layman can understand. Are there any light reading (jk) books that would provide me with info.
Sorry for rambling but I guess tough guy that I am, I’m still afraid.
My personal saying is “ Cancer can reach out and touch anyone, but some of us send out the invitation” Well I sent the invite for smoking for 40+ years on top of exposure to Silicon and asbestos. I’m sorry but I needed a vent and my angst is so tiny compared to how anxious and frightened so many of you feel. I just want to know what they say and I tried rec
Rock on! The fiddlershere/John

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John, @fiddlershere, You don't need to diminish what you are feeling, cancer is scary stuff, and it's all a foreign language until you are forced to learn about it. We can help.
Your nodule has likely been there for a while, and my perspective in these situations is generally, "if I'm not in an Emergency Room or symptomatic, I have time to think about next steps". You don't want to take too long, for obvious reasons, but more than a week or two is likely not going to change outcomes. So, take a breath. All of your questions are valid. It's not unheard of to do a wedge resection prior to pathology confirming a cancer diagnosis. You are the only one that can decide if you are comfortable with that. Many people feel that they just 'want it out', removing any question. Others want that cancer confirmation prior to any surgery. You get to choose, it's your body.
It's hard when you want definitive answers, but sometimes we don't get those. I have had a bronchoscopy that was inconclusive. Of course this is frustrating. I had a repeat bronchoscopy at another medical facility, and it provided the answers that we needed. It sounds like a second opinion might be helpful. I'm not sure how quickly, or if, you can pull that together. Is that something that you might be able to look into?

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hi @fiddlershere - it sounds like things are moving quickly, so I can understand why you have unanswered questions. what they're proposing is called a wedge resection. you can think of it like a wedge of pie but your lung is the pie. it's a way to remove a suspicious nodule and preserve as much lung tissue as possible. it's also sometimes done as a surgical biopsy. if your bronchoscopy was inconclusive - they might think this has a better chance of success than repeating that procedure, with the added benefit of removing the nodule while they're in there. I recommend making a list of all of the questions you have before you meet with the thoracic surgeon. let us know how your appointments go. and if you need more time to think about it - tell them Friday is too soon for you. as @lls8000 said, a week or 2 isn't going to change an outcome.

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@fiddlershere I have thoughtfully read your dilemma and other comments. I am sorry you are dealing with this. My thoughts are two fold: given where you are in the country for treatment, I believe you are in good hands. Write down your questions. Take someone you trust with you so there is another set of ears and eyes. Sometimes the surgery you had can be inconclusive; hence a wedge next. They appear to be proceeding quickly. I would ask why. My husband’s PET scan used to light up so much that doctor’s were beyond worried. He had sarcoid, not cancer. And sometimes those darn nodules are hard to get to with a robotic surgery. Waiting a bit till you get the answers you desire is not a bad thing as someone else posted . Once we understand the why and the urgency of things, situations tend to become clear. Trust your body and it’s infinite wisdom- something had you going in the first place! Making an informed decision after knowing the why is a good thing. Second opinions are great too - my guess with this is they will agree on course of action. Understanding in layman’s terms will help you and hopefully give you peace of mind. I think that’s the missing piece. Irene5

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