JustEA Posted April 19, 2008 Share Posted April 19, 2008 Hello, my name is E A and I have been diagnosed with nsclc. I have been on a rollercoaster ride since Feb 6th. I was supposed to go in for surgery on my neck. I have 2 herniated discs. They saw a 3cm leasion on my routine chest and sent me for CT. Confirmed leasion in R upper lobe. Sent for PET. Sent to Pulmonoligist for results of PET. Told I had inoperable lung cancer because it was in both lungs and lymph glands in L hilar region. Was scheduled for Bronch/biopsy. Had not told ANYONE anything about the tests yet because I did not want to scare them for no reason. I am also my husband's caregiver. He is a double amputee that went 100% deaf from antibiotics. I was very worried about how he would take it. Before I went for biopsy I finally told my family what was happening. We all went together for the results of the biopsy. The Dr. came into the room and sat down looked me in the eye and said "Well you don't have lung cancer only a lung infection." We all sat there in total shock not knowing what to say. My husband, God love him, said what we all were thinking. "What did he say?" My family asked many questions and we all left there with an uncomfortable feeling. We all talked and decided I would see an oncology specialist for a second opinion. I collected all my records and discs and off we went. He reviewed my films and consulted his radiologist and they felt I should have a needle biopsy, they were not comfortable with the diagnosis either. I took the antibiotics from the other doctor for three weeks and then went for the biopsy. We all figured if it was only an infection there would not be anything to biopsy. I was devastated when the said there was NO change from the previous CT scan. They got a sample from the leasion on my R lung and when they went for the L lung it collapsed. They could not get a sample. They put in a chest tube and admitted me to the hospital for 5 days. The biopsy on the R lung came back positive for nsclc. They still did not know how to treat it because they could not stage it without a sample from the other side. I was scheduled with a surgeon for a mediasteinoscopy and a thoracotmy and possible resection of the L lung. I went in for my surgery April 11th. They said they plucked all kinds of node from the media area and did a resection of the L hilar lymph gland and did the resection of the leasion in the L upper lung. The results are in! Nothing showed in any of the nodes or gland!! However, The tumor was inconclusive. They could still not tell if it was metastatic or a second primary. They are sending it off to Mayo. They say if it is metastatic then I am stage IV and can only do chemo. If it is a second primary they want to remove the R upper lobe of my R lung. It is now a waiting game. They say it will be 1 to 2 weeks before we get an answer from Mayo. I am so frustrated and confused and overwhelmed by it all. I have not told my family this latest fiasco. I will wait for the results from Mayo. I feel like I am torturing them. I do then I don't then I do then we aren't sure then we don't know how to treat it, can't be sure. I just want a plan so I can start doing something. Is that too much to ask? Quote Link to comment Share on other sites More sharing options...
recce101 Posted April 19, 2008 Share Posted April 19, 2008 Hi, EA, welcome to the group! You and I are the only two people I know of (there MUST be others) who had a thoracotomy NOT to remove a known malignancy, but as a diagnostic procedure. Since yours has been inconclusive so far, that must be very frustrating for you. I hope you're recovering okay from the surgery. You obviously have a good grasp of the issues for and against surgery in a metastatic vs. nonmetastatic setting, but I might suggest you present your situation to Dr. West at GRACE/OncTalk to get his perspective. He practices in Seattle and is an internationally-recognized expert on lung cancer who gives high priority to promptly answering online questions from people like you and me. A lot of us here are also members of his original onctalk.com site (as well as the new cancergrace.org site) with the same usernames there as here. OncTalk has been recently folded into GRACE (Global Resource for Advancing Cancer Education), and all new registrations are being taken at cancergrace.org. You can post questions in the Forums area of the site. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
carolhg Posted April 19, 2008 Share Posted April 19, 2008 I am sorry that you are having to experience so much agony. I hope that you are recovering well from your surgery and that you get good news from Mayo. Carol Quote Link to comment Share on other sites More sharing options...
Ry Posted April 19, 2008 Share Posted April 19, 2008 Oh my God-- E A should stand for "enough already"! It is a good thing you had a feeling and went on for more testing. I hope you turn out to be a surgical candidate. Keep us posted on how it all goes. Welcome to our board- I am glad you found us. Rochelle Quote Link to comment Share on other sites More sharing options...
deb10653 Posted April 19, 2008 Share Posted April 19, 2008 Wow, I do so hope they are overstating the waiting period and that you get an answer sooner rather than later, no matter what the news the waiting is the worse I think. I sincerely hope that it is something which can be handled surgically and is not stage IV but if that is the case this site can give you hope! My thoughts are with you as you wait for Mayo Deb Quote Link to comment Share on other sites More sharing options...
Connie B Posted April 19, 2008 Share Posted April 19, 2008 Hi EA, Sorry you have the need to be here, but I'm glad we're here to be able to support you. 2 week wait for a biposy from MAYO? What a CROCK! Which Mayo are you talking about, Arizona, or Minnesota? Either way, 2 weeks is BULL! (sorry, that just upsets me when I hear that). I would REALLY PUSH to have it pushed up sooner then 2 weeks, and it CAN be done! You have to stay on top of this also, because sometimes things get lost in the shuffle. (yes even at Mayo). Well, keep us posted. I'm here in Minnesota Cheering you on. We're here for you. Quote Link to comment Share on other sites More sharing options...
chloesmom Posted April 19, 2008 Share Posted April 19, 2008 When I had breast cancer, the pathologist was looking for a second opinion and my slides were sent to Mayo. It did indeed take between one and two weeks to get any information from Mayo Clinic as to the diagnosis. In fact, when I had my lung surgery, they did frozen section (preliminary) diagnosis when I was on the table, but it was going to be 5 business days for the final pathology report. We all totally understand the agony of waiting for test results, and of course, time is important both to getting your health back and to easing your mind, but it's not uncommon to have to wait for these kinds of results. I hope that your results are back sooner than expected and that you get good results. Cindy Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted April 19, 2008 Share Posted April 19, 2008 Hello EA and welcome I hope you will find this site to be helpful and comforting. Please let us know what we can do to help Warmly Christine Quote Link to comment Share on other sites More sharing options...
SandraL Posted April 19, 2008 Share Posted April 19, 2008 Hi there EA. No you are not asking for too much. The waiting period for a treatment plan is simply awful and many of us here have gone through it. I hope you get some answers quickly and can on with a plan. Then you will hopefully feel much better. I know I did. Take care Quote Link to comment Share on other sites More sharing options...
Patti B Posted April 19, 2008 Share Posted April 19, 2008 EA- Welcome but of course I am sorry you have the need to be here. SOOoo sorry for the wait and agony you are going through. Trust me, once you get some answers and a treatment plan is in place, you will feel better. Let us know if we can help you. Hugs - Patti B Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted April 20, 2008 Share Posted April 20, 2008 Welcome EA to the board, glad you found us. Rich Quote Link to comment Share on other sites More sharing options...
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