Deanna

I appreciate your hopeful post. When they talked to us before and after the procedure they reaffirmed that under no circumstance would he be a candidate to biopsy the mass itself or for surgery to remove the mass. They told us his lungs could not make it through surgery and the risks of biopsying the mass itself outweighed the benefits. So we know that much. They would only recommend the procedure by the gastroenterologist. They said if they weren't able to get a sample through that procedure or if dad didn't want that procedure then we need to wait and see if the lymph nodes enlarge enough that they feel confident in their ability to get a sample. So we don't know any details about that mass. The only thing the 4 doctors agree on is that they believe the mass is cancer and malignant. So for now we offer my dad love and support and enjoy our time with him. I'd love for time to prove that we've all been wrong and he doesn't have cancer. However we're prepared to accept they we're right.

This is definitely a long waiting process. Just concentrating on hanging out with him as much as possible and making sure he is kept comfortable. If we get a chance to get answers that will be great. This is tiring and we're just getting started.

They weren't able to get a sample. They are going to get him set up with an appointment for a different procedure soon. A GI doctor will perform it. They couldn't get a sample because the lymph node they needed to get to was in too risky of a spot. They said the other procedure will concentrate on a lymph node by his esophagus. They said that if a sample can't be gotten there then we may have to consider what we're trying to do and maybe stop everything. Thru said that the types of things that could possibly be done won't improve his quality or quantity of life. They also believe he needs to see a throat doctor as there was an area on his larynx that lit up on the PET scan that needs to be looked at by the specialist. Dad may not want the test. They figured out that inflammation in his lungs is the reason he coughs up blood. He will meet with the GI doctor but doesn't believe he's willing to do any further testing at this point. He says he'd do another scan in a few months and if the lymph nodes are enlarged enough they are confident in their ability to get a sample then he may consider doing it.

Thank you Lauren. This site helped me feel prepared for his bronchoscopy today. They just took him back. They didn't sound real certain they could get a good sample but did assure us there was another benefit to having it done...investigating why he's coughing up blood. They said they're doing an EBUL and possible a lavage. If they can't get a sample they're going to recommend a procedure to get a sample close to his esophagus. I'm praying we get a good sample today

Tom, I appreciate you providing one possible explanation. It's hard when two of us girls can't be there with him because we live too far away to make all of the appointments. I'd see if I could communicate with them directly but they already do that with my dad and younger sister. I'm sure they don't need to add more people to that list. Asking questions of the two who are there add talk to the doctor seems to cause then stress and I certainly don't want to do that. I will maybe ask my sister to share the written report from the biopsy results with me so I can read them. I really wish my dad would consider some form of treatment but I don't hold out much hope. Who knows, maybe they'll offer something that he will surprise us and try. I'm ready for definitive answers and options to be given to my dad so we know exactly what we are facing. Thank you again for taking the time to try to give me some possible insights.

Thank you for your response Tom. I definitely believe that the bronchoscopy is the safest route for my dad specifically and I'm secure in that line of reasoning. I was more questioning this option based on my belief that they don't think there is cancer in the lymph nodes (I based this belief on the fact that they told my dad and sister that they weren't worried about his lymph nodes or kidney). I will certainly be asking questions while I'm there. After speaking with my sister last night it now seems to me that they have not ruled out cancer in his lymph nodes so this procedure makes complete sense to me. I am a bit confused by the doctor at this point though. When he met with them a couple of weeks ago and discussed the results of his CT Scan, they told him that while it could still be an infection they really believe that is not the case and that he does have lung cancer and told us to prepare for the worst. Okay that seems straightforward. However, my sister said that at the same visit the doctor was perfectly happy waiting and not doing further testing right now but is doing so because we want answers. If we should be preparing for the worst why would he have thought it was okay to wait to do any testing? These are the things that drive me crazy while we are waiting. My sister doesn't believe that we will see the doctor when we are in for him to get the scope done on Friday. I'm not really sure what questions I can ask the people we will be in contact with but I guess I will feel that out when I am there. I really would just like some definitive answers at this point.

I'm wondering if They street worried about the lymph nodes or kidney for a reason other than it's definitely not cancer in those areas. As I did research early on it seems to me that they will biopsy a lymph node instead of a lung because whatever they find there applies to what is in the lung. Right now all we can really do is speculate until they give is definitive answers. I hope those aren't too far off.

Steff, Thank you so much for taking the time to reply to my post. To be honest, I don't believe my father is going to pursue any treatment. He has felt an extreme loss of quality of life over the last 5 years or so. In his mind, this is the price he has to pay for choosing to smoke. He told me this weekend when I went to visit him that he is 70 and has lived a full and good life. He says he gets no enjoyment out of anything anymore. My sisters and I aren't surprised by his viewpoint on this issue and we will accept it if they offer him any form of treatment and he refuses. Each person has to make their own decisions. Without lung cancer, he has only been able to sit in his room all day for about the last 3 years. He cannot even play guitar anymore and that was his entire life really. He can't do his own laundry, go shopping for anything, drive, cook, clean... literally nothing but exist. He is a stubborn old man but we sure respect that this is his decision. I'm mostly confused as to how it is going to be helpful for them to biopsy his lymph node if they don't believe there is cancer there? My sister seems to believe that whatever is going on with the lymph nodes and his kidney are not cancer related. If that is true then how will it be helpful to biopsy the lymph node?

I am the middle daughter in my family. My father lives with my younger sister and our older sister lives in Texas (we are in Illinois). My dad hasn't been healthy for some time and as he has been a smoker for the better part of 60 years, I can't say that we are surprised by where we are with him right now. A little medical background for him is that he has suffered from severe and debilitating COPD for over a decade now. Just to give you a gauge of how severe his breathing issues are, he cannot perform pulmonary function tests at all. He will pass out. He has high blood pressure and chronic cellulitis as well. He has quit smoking more than once over the years but he always ends up back to it. He is currently a non-smoker. Also likely worth noting is he spent a fair amount of time as an alcoholic. Over the last couple of years he has been hospitalized for pneumonia and cellulitis (nearly septic at admission one of those times) on multiple occasions. This past winter he came down with shingles. He got over it and all seemed well. However, just a few short months later he was diagnosed as having it a second time. During a follow up visit for this round of shingles he told his doctor that he'd had a fever for a couple of days and they told him this wasn't typical. Due to his history of pneumonia they did a chest x-ray. 10 1/2 days later they called to tell him that they saw a concerning spot on his chest x-ray and were referring him to the VA in Iowa City. After a couple of weeks the VA finally contacted him and scheduled him for a CT Scan. A few days after the scan they called and told him they found a mass in his lung. They stated they were scheduling him for a biopsy the following Wednesday. In the meantime, over the weekend he got a letter from them in which they told him the mass was in his LLL, kidney and swollen lymph nodes were noted as well. He had a handful of episodes of coughing up blood during all of this time (they were always small amounts). So the day of the biopsy comes and when they get there for the test they are told they have decided not to do the biopsy and will schedule him for a PET Scan instead. However, they then insist he attempt the stupid PFTs again. Of course he nearly passes out and can't do them. I assure you we will not allow another doctor to even schedule these tests again as he can't do them and that should speak volumes all on its own. Then he meets with what he calls a lung doctor (I'll guess he means pulmonologist). That doctor tells him that while this still could be an infection such as bronchitis/pneumonia he is all but certain this is lung cancer. He told my father and sister that we need to prepare for the worst. They called him a couple of days later and he is scheduled the next scan just a couple of days later. After those results come in, the doctor calls and tells my sister that he his not worried about the kidney or lymph nodes, just the lung. He says that with my dad's breathing issues that a needle biopsy is much too risky and he will do a bronchoscopy instead and biopsy a lymph node. That test is scheduled to happen this upcoming Friday and I will be there for that test. He has been told he is not a candidate for surgery based on his health and he has assured him that he will not do chemo or radiation. That is where I currently sit and the whirlwind we are all in with this process. I am a bit confused about some things we have been told and the decision to biopsy from a lymph node. Where on the forums do you think those questions are best addressed? Here in the Introduce Yourself area? Thank you!