Father in diagnosing phase of this journey

[Deanna]

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!

[Steff]

Deanna,

I am so very sorry that you and your family are having to deal with this dreaded journey.  Hopefully docs are able to come up with an effective treatment plan that makes all parties satisfied.  There are many treatment options besides surgery and chemo/radiation.  In fact, there are now immunotherapies that are being used for first line treatment and are more effective than chemo.  To find out all of the options available to your dad, make sure they do a bio-marker/gene mutation test on his biopsy.  That will tell you what, if any, other types of treatment is possible.  make sure you are also finding out what type of lung cancer he has (small cell, non-small cell, etc).  This way you can begin to do your own research, if you like.

When my mom was first diagnosed with her recurrence of non-small cell lung cancer, I used some of the questionnaires on the Lungevity website to help guide me in my query with the docs.  There is a lot of great information on the Lungevity website, along with these wonderful forums.  As far as where you should post, feel free to post where ever.  I see that the Introduce yourself forum gets the most action.  Some people just continue their posts on the thread of their original post, others post in specific forums.  No matter where you post, we will find you (I don't mean that to sound scary!!). There is a button to push to see Unread Content.  Many of us use that to find new postings.

Please reach out when you have questions or need to vent...this is a great place to do both.  Also, don't be afraid to look around...many people's stories have been very helpful for me when looking for information on my mom.

Take care, best wishes for you and your family. 

[Deanna]

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?

[Steff]

I am sure there is a perfectly good explanation as to why they would biopsy the lymphnode, I'm just not sure of the answer...someone else may be able to chime in and give some insight.

I can see where your dad is coming from, my dad is kind of the same way - he doesn't have cancer (that we know of), but he has a movement disorder similar to parkinson's.  He has gone from a completely independent, smart, funny man to someone who sits in front of the tv because he falls all of the time.  It is sad to see when our "big, tough" dads lose their independence.  You are all brave in taking on this battle with your dad.  I wish you the best and hope that whatever he decides you all are at peace with it and his battle is not too taxing.

[Deanna]

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. 

[Tom Galli]

Deanna,

Welcome here.

I'm not a doctor but I've heard of individuals not receiving a needle biopsy in the lung because of a compromised pulmonary system.  Your description of your dad's breathing problems and inability to complete a pulmonary function test certainly suggest your dad's system is indeed compromised.  So that may be the rationale for an adjacent lymph node.  I stress may be because I'm not a doctor....

I've also known folks who have refused treatment.  These decisions, if informed, can be good decisions because lung cancer treatment is not a walk in the park.  I think your role as a daughter is to ensure your dad is informed.  I can understand why chemotherapy might be a cause for concern but radiation treatment may be helpful.  Radiation generally has few long duration side effects and can be very helpful as both curative and palliative procedures. I suggest you do some reading here, here and here.  After, if you have questions, this is the place.

Stay the course.

Tom

[Deanna]

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.

[Tom Galli]

Deanna,

It is hard to give you a definitive answer based on what your dad's doctor is or is not thinking. But, because cancer is such a frightening disease, I'll take a stab at an answer.  Please know that I may be way off the mark.

I think the doctor is trying to be responsive to both your dad and your family.  I think he believes, from testing information he has and from his experience in diagnosing cancer, that your dad does in fact have cancer. But he is in the middle between your dad's desire of not wanting treatment (further testing?) and the families desire wanting further answers. I would focus on getting a unified family position inclusive of your dad's desires and communicate that to your dad's doctor. Again, I could be completely wrong in this avenue of thinking.

You may not see his doctor when the scope is performed.  The scope could be performed by another speciality and if your dad's doctor is a medical oncologist, he may or may not be attending.  A bronchoscope procedure can yield two kinds of information: photographs and tissue sample for a biopsy.  You might ask to see the photographs and to have those explained in hopes of providing an answer.  And, depending on your dad's pulmonary state, the photographs may not provide significant answers.  The biopsy report may take several days or up to a week to yield answers.

I wish I had more information to convey to help you with your understanding.

Stay the course.

Tom

[Deanna]

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.

[BridgetO]

Hi Deanna, 

Your dad has been through a lot!  Here are some  of my experience  in  being diagnosed with lung cancer, and about waiting.  I had a nodule found in my lung in a CT scan that was for routine surveillance for possible metastases from another previous (non-lung) cancer. The lung nodule was very small, so they recommended waiting to see what it would do. It was possible that it was an infection or inflammation. So they did another CT in 3 months and it had grown very slightly. Because it was growing, they needed to do something about it. But because it was growing very slowly, they weren't in any rush, but continued to do some tesing.  With my other cancer, they knew immediately that it was big and aggressive and I was in surgery within a week, so I had the  sense that these folks knew when it was necessary to be in a big hurry, With my lung, due to its location they couldn't do either a needle or bronchial biopsy. They had to take  out  a lobe of lung to see what it was, and in fact it was a Stage 1A adenocarcinoma. Unlike your dad, I was otherwise in good health, and my surgery was pretty uneventful.

I agree with Tom that sometimes no treatment is a reasonable decsion, provided it's based on good information. My mom,  who had metastatic breast cancer, chose to stop treatment when the side effects of it were impairing her quality of life intolerably,  I've also known others who made that decsion. These are truly heart-wrenching decisions.

I wish for the best possible outcome for your dad and your whole family.

Bridget O

 

[LaurenH]

Hi, Deana,

Welcome to LCSC. I am sorry that you and your family are going through this difficult time. I am glad to see that you've connected with several of our members. This community is full of people with experience navigating a lung cancer navigation, either their own or a loved one's. If you'd like, I would be happy to provide you with more information about LUNGevity's Support & Survivorship programs. Here is a link to our Caregiver Resource Center. Please continue to keep us posted on your dad's status and know that we are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[Deanna]

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

[Deanna]

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.

[BridgetO]

What a disappointment that they couldn't get a sample for biopsy!  I hope he will tolerate the next procedure well and that you will both tolerate the waiting and uncertainty. Cancer diagnois and treatment seems to be full of waiting and uncertainty and the challenge is to continue your life the best you can in spite of it, It's hard!  Hang in there.

Bridget O

[Deanna]

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.

[bes]

Hi Deanna and welcome I am new too.  My husband has severe copd can not tolerate PFT testing is unable to walk any distance and was able to have a lung biopsy; he also has 2 heart stents, is type 2 diabetic and has PAD and CAD they couldn't do the nodule because they were afraid of complications but were able to do the mass. I am thinking perhaps his was in a area that would have been hard to reach or would have created trauma for him.  My hubby said it wasn't an easy procedure to have done you are awake the whole time a needle is used to numb the area--you can't move and then of course the biopsy is done you have to lie still and be able to breath when they ask--this also was difficult for him.  Tom is a great resource.

One thing I have learned is to ask lots of questions. Hang in there

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[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.