Katie VonA Posted November 16, 2018 Share Posted November 16, 2018 My name is Katie and I’m 48 years old with three beautiful teenage girls and a loving husband. What I thought I was going to be diagnosed with was asthma turned into NSCLC on the hilum and in the bronchiole of my right lung. I’ve recently had ct scan, uS brochioscope, pet scan and MRI all within the last week. Sitting here waiting for more test results is the absolutely the worst feeling I’ve ever felt. I have an oncology appointment on Tuesday. I don’t want to do anymore internet searches because It hurts my heart. I’m looking for an outlet that will let me express my feelings and share info on treatments. I called a friend who is fighting breast cancer for the past 8 years said this was how she was able to cope. I hope the same for me. Link to comment Share on other sites More sharing options...
Donna G Posted November 16, 2018 Share Posted November 16, 2018 Welcome Katie. Glad you found us. I was 50 years old when I was diagnosed. I had pain in my arm and chest. I thought it was due to just having moved. I thought it was a muscle problem but a chest xray showed a tumor in my R upper lung pressing on nerves and my chest wall. I really thought that my life was over. Sounds like your doctors are quickly doing tests and hopefully starting treatmenst soon. I had a lot on treatment and surgery. I turned 71 this past summer. Please keep us posted on how you are doing and feel free to ask questions. We understand and want to help. Donna G Link to comment Share on other sites More sharing options...
BridgetO Posted November 16, 2018 Share Posted November 16, 2018 Hi Katie and welcome. Waiting for teat results is one of the most anxiety producing things about cancer. this is a good place to share your feelings. We've all been there. Let us know how we can best support you. Bridget O Link to comment Share on other sites More sharing options...
Katie VonA Posted November 16, 2018 Author Share Posted November 16, 2018 Thank you Bridget and Donna. Your kind words mean a lot right now. I’m trying to stay positive and thank goodness for Xanax right now. Katie Link to comment Share on other sites More sharing options...
Tom Galli Posted November 17, 2018 Share Posted November 17, 2018 Katie, This is a good place to cope. We can also provide you insight and information into treatment. You've got lots on your plate contemplating a diagnosis and treatment plan, so I will keep things simple. I've survived nearly 15 years after being diagnosed with lung cancer. I've had nearly every type of treatment available and despite 4 recurrences after "no evidence of disease" (NED) therapy, I'm still alive. If I can live, so can you. Read this and stay the course. Tom Link to comment Share on other sites More sharing options...
Katie VonA Posted November 17, 2018 Author Share Posted November 17, 2018 Thank you Tom. I really appreciate your story. It’s hard to hear those words “you’ve got lung cancer” and not think Automatically that I’ve got limited time. I needed to hear positive outcomes and keep positive. I don’t know my stage yet but hopefully will on Tuesday. Question - does everyone get a second opinion and go to a big cancer hospital? The closest one to me is Moffit in Tampa. This is the advice I’ve gotten so far. Link to comment Share on other sites More sharing options...
Laurel Posted November 17, 2018 Share Posted November 17, 2018 When I was diagnosed with lung cancer November 2017, my sister told me I could go to two websites she outlined. The scans....the waiting are scary enough. This is a great place for experienced based, loving advice. It helped me get through this past year. I have a local oncologist and radiologist and my surgery was done at M D Anderson, Houston, which also provided a second opinion. Sending prayers and soft hugs. Link to comment Share on other sites More sharing options...
Katie VonA Posted November 17, 2018 Author Share Posted November 17, 2018 I was told by my pulmonologist it’s inoperable... but I need hear ithat few more times. Thanks for your kind words. This website has made my last 14 hours much more manageable mentally than the last 7 days. I’m so grateful to have had a friend suggest it. Link to comment Share on other sites More sharing options...
BridgetO Posted November 17, 2018 Share Posted November 17, 2018 Hi Katie, I didn't get a second opinion on my lung cancer treatment, since it seemed fairly cut and dried. I did have a prior non-lung cancer, though, that I did seek a second opinion on. It was a rare cancer and after having surgery, I wasn't confident of my medical onologists treament plan. My medical insurance is an HMO with its own doctors and hospital so I was limited in where I could have my treatment, and they wouldn't pay for an outside second opinion. I chose to get a second opinion at a local university hospital at my own expense. It was well worth it. I got a recommendation from a doctor who had experience treating my kind of cancer. I went back to my med onc with it and she agreed to follow it. Apparently it worked, because I'm almost 8 years out on this cancer that had a "dismal prognosis" and I'm NED on it. Also NED on the lung cancer, and a third cancer (breast) that was almost 11 years ago. So I think a second opinion from the best place you can fine (an afford) is a good idea if you aren't confident about the advice you're getting. Bridget Link to comment Share on other sites More sharing options...
Katie VonA Posted November 17, 2018 Author Share Posted November 17, 2018 Fortunately and blessed that my mother in law is very involved on the foundation board of our local hospital. She’s been very active and supportive through the process so far and has already picked another doctor as a second opinion. I was just curious if it was a common practice. At first I thought the first doctor would be insulted or something but then thought they would appreciate the second opinion. I guess we will cross that bridge when the time comes. Thank you. Link to comment Share on other sites More sharing options...
Tom Galli Posted November 17, 2018 Share Posted November 17, 2018 Katie, Once I asked my GP whom I've known for years what his view about a second opinion was. He said: "I don't care; I get paid!" He is of course a brash Texan but a great doctor. His opinion coincides with my experience as a consulting engineer. I had clients that didn't like my solution and sought the services of other engineers. But I didn't mind because I also got paid. By all means, it is your money and your choice so be satisfied. Stay the course. Tom Link to comment Share on other sites More sharing options...
Kleo Posted November 18, 2018 Share Posted November 18, 2018 Hi Katie! Welcome fellow Floridian! Hey if getting a second opinion makes ya feel better...do it! I did. I was initially told in the ER in January that what I thought was just bronchitis or something... was lung cancer and that it's possible that I may not be alive in 3 weeks. (Terrible bedside manner..that doc!) He wanted to admit me to the hospital right then and there and start emergency treatment. I freaked out and I left. Walked out. I was in shock I think. I figured if I only had 3 weeks, I wasn't gonna spend it in there with that guy yelling at me! Went the next day to a different doctor. He xrayed then ordered a CT scan. Didn't yell. Referred me to my current oncologist. She got me sorted right out! And calmed me down.😜 I called Moffit as well....but the process for getting in that they described to me sounded so drawn out, I didn't want to wait that long to get started. That first ER doc scared me so much...I was afraid to wait that long to get in and get treatments started.! I have adenocarcinoma-left lung and a lymphnode... also unoperable. I was initially staged at 3B. I've since finished my traditional chemo/radiation treatments and have started on immunotherapy. Waiting for those test results is definitely the pits though. We all here know that feeling all too well. Keep us updated please! Link to comment Share on other sites More sharing options...
Katie VonA Posted November 18, 2018 Author Share Posted November 18, 2018 Wow - what a horrible experience. I’m sorry you had to go through that. Everything is going so quickly and so slowly at the same time. I’m not staged yet as the PET scan and mri was just done and hope to find out on Tuesday. Praying I’m in the early stages. The pulmonologist said it was inoperable not the oncologist so we shall see. I hope and pray your treatment is successful!! Where are you in Florida? I’m in south east coast Florida in Martin County. Katie Link to comment Share on other sites More sharing options...
Roz Posted November 18, 2018 Share Posted November 18, 2018 Hi Katie, I hope that you have someone with you when you go on Tuesday for your results and also when you go for your second opinion. I found that really helpful. I also was diagnosed with adenocarcinoma in the summer of 2017. I had surgery in Sept 17 (had lower left lobe removed with mass), and then in Oct 2017 (upper right lobe removed with the other mass). I had chemo after that and they staged me at Stage IV. One of the hardest parts of the whole process is the waiting. I go every 3 months for CT scans, and feel like in-between I'm waiting for the next one. Everyone's situation is different so getting a second opinion will help you find the best treatment. There's so much we really can't control when it comes to cancer, but at least we can make informed decisions about how we treat it. Sending you lots of positive energy! Best, Ro Link to comment Share on other sites More sharing options...
Kleo Posted November 18, 2018 Share Posted November 18, 2018 Katie I'm in Pinellas County...near Clearwater Beach. 🌴🌞🌴 Link to comment Share on other sites More sharing options...
Katie VonA Posted November 18, 2018 Author Share Posted November 18, 2018 I know that area well. I have three competitive soccer playing girls and have been to soccer tournaments there. I’ll be up in Melbourne tomorrow night. I live in Stuart. I thought we could compare specialists.... Link to comment Share on other sites More sharing options...
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