lilyjohn Posted September 9, 2003 Share Posted September 9, 2003 Has anyone heard of having a diagnosis from a biopsy of just one lymph node from the neck? I have read so many things and they all say that to get a diagnosis from a lymph node takes from one to three days. Yet we were given a diagnosis and stage after just one hour. Johnny was still in recovery from the surgery. He never had a lung biopsy. Is that unusual or not. I find that making that kind of diagnosis should have more to go on than a biopsy of just that one lymph node and a CAT scan that was inconclusive don't you? Also we were never told what kind of NSCLC he had. I read and all of you know the kind. We were never told any of that. I feel like his diagnosis was not really done properly and there could have been an error. I keep reading where even the PET scans make errors. He had been exposed to mold for over 7 years that brings up a lot of questions about fungus to the lung but no one ever did anything to find out if he had that. I am suspecious of everything they did with him after the way he died. Thanks for any information. Lillian Quote Link to comment Share on other sites More sharing options...
marta Posted September 9, 2003 Share Posted September 9, 2003 Hi Lilly, I completely agree that he has not had an through work up as to the stage and diagnosis of his NSCLC. A biopsy is the single best diganostic test that doctors can offer...BUT..it is not a replacement for a complete staging. When there is a biopsy done, it only determines if there is cancer present in the body..nothing more... A PET scan is effective, but it is not the end all be all of diagnostic testing. Staging is the most critical part of this...and where they stage him will determine how the rest of his treatment is carried out. It is very very very important that you get a second opinion at this point. You and Johnny deserve answers...and the right to know with 95 percent certainty that this is DEFINITELY NSCLC....and the exact stage it is. Also, has anyone tested him for mesothelioma? The fungus exposure is a big red flag.... Find another cancer center..and take all the films with you..Sometimes a different doc with see things in a new light.. There was a question in my mom's diagnosis..and we took her five hours away to have another work up done. Do what you have to do to get the answers you need. Where do you live? Maybe someone on the boards can recommend a doc to you... Good luck Laura Quote Link to comment Share on other sites More sharing options...
norme Posted September 9, 2003 Share Posted September 9, 2003 Last 9/11/02 they did surgery on my Buddy for the lc. At that time they checked seven lymph nodes for cancer and found 5 had cancer. Whether they knew this doing the operation I don't know... Why don't you request his medical records? I sure wish I had my mom's and dad's from the past to see if it was the same as my brother''s lc...Medical records are a good thing to hold on to.... Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted September 9, 2003 Author Share Posted September 9, 2003 Thank you for your response Laura All of this took place last year. We never found another place and got the answers we sought. Johnny was doing so well that we thought that he was getting the best treatment. It was only when the nurse at chemo told him that he would be on chemo for the rest of his life that the problems started. He developed anxiety and panic attacks and his doctor would not address that issue. As time passed I learned that his ego whould not allow his word to be questioned. They refused to give him anything for the anxiety and panic attacks then let him use Vicodin to try to help himself. That just made the situation worse. No one would help us. I was caring for him all alone and it just overwhelmed me. It was a full time job just dealing with the anxiety. He ended up checking into the hospital to try to get help. The things they did to him there and th en later in a nursing home let to another trip to the hospital on November 29th 2002. There he was given a large dose of Ativan after telling them that he would not take it because he was alergic to it. It caused a condition that I have learned sense is called Paradoxican CNS stemulation. In other words he went on a real trip. The doctor at the hospital harrased him trying to force him to sign a DNR. When he refused to sign one the so called doctor refused to treat hm then shipped him off to another hospital after they made me leave(telling me that he had pneumonia and had to get there to be treated and they would not be able to get him in the ambulance with me there). Sense we were not married and I wanted him to get the treatment I was stupid enough to leave him in their hands. I just found out yesterday that to get him in the ambulance they gave him morphine. Once at the other hospital he was never tested for toxins from medications. Instead the continued to give him both morphine and Vicodin saying it was to calm him down. As a result he went into a coma and when I asked I was told it was not a coma but a restfull sleep and they refused to take his vital signs. Later because I was there and saw what was going on the rushed him to ICU. They did nothing to save him that was required because he was full code. All they did was bag him. On December 2,2002 at 5am he died with me standing there hopelessly watching. I live with the nightmare of what happened to him every minute of my life. I have sought and am still seeking answers. Sense his death I have learned that his treatment was suspect right from the beginning. HIs diagnosis was made from that biopsy of just one lymph node from his neck and an inconclusive CAT scan that was 2 months old by then. He did so well on chemo that he gained 30 pounds and the nodules were reduced by 50% in 6 weeks. Not one time were we told what kind of NSCLC he was supposed to have. We were told so many lies that I have started to believe that it was because he was misdiagnosed and they didn't want us to find out. Either the staff at the doctors office, two hospitals and a nursing home were completely incompitent or they delberately chose for him to die. The lies we were told make me suspect the later. Because of his death I have become an advocate for patients rights and have gathered so much information on medications and cancer treatments. I had an appointment to take him to Cancer Treatment and Wellness Center in Seattle the following week. They made sure that he never got there. I have written out his whole story hoping that enough people will read it that what they did will never happen again. I am also working to find a way to have them expossed publicly. I will not rest until that day comes. I grieve for Johnny every day and the injustice that he recieved. That kind of thing has to stop and I want to be a major part in stopping it. If you or anyone would like to read Johnny's story just email me at lild@people pc.com be sure to send me your email address. It is very long and detailed but it clearly shows how unrealistic cancer is seen by the public and the medical profession and what that can lead to. I continue to pray for a cure of both the cancer and attitude believing that a change in attitude will go far to make cancer a chronic disease that can be managed like any other. Everyone of you are in my prayers daily. I only ask that you be carefull and demand help if you get into the kind of situation that I did. Had I had more knowledge I know beyond a doubt that my Johnny would still be alive. God bless all of you. Lillian Quote Link to comment Share on other sites More sharing options...
marta Posted September 9, 2003 Share Posted September 9, 2003 Hi Lily, First of all, allow me to extend my sympathies for the loss of Johnny. I would also like to apologize for not recognizing that this question was about something in the past I am very very sorry for responding to your post this way. Thank you for sharing Johnny's story. I believe that we all need to have advocates... The medical community cant always save our loved ones, but they can respect the little things, or help make our journey more comfortable. I admire your work...and the process of reflection on your journey with Johnny... Keep up the work, and thank you for your advice. You are in my prayers Laura Quote Link to comment Share on other sites More sharing options...
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