MBinOregon Posted January 6, 2018 Share Posted January 6, 2018 Hello, I've always been one of the healthiest people that others know. I exercise almost every day, eat healthy, never smoked and don't even drink. I had a cold around Thanksgiving and the cough was lingering which was not too unusual for me. A "random" chest x-ray on 12/5/17 showed a mass in my middle lobe in the right lung along with multiple nodules all over entire right lung. Followed by CT Scan, a visit to pulmonologist, a needle biopsy and the diagnosis on 12/20. Met with an oncologist, then PET and MRI which fortunately showed nothing else. Met with the oncologist second time to discuss the results. Turned out I'm positive for ROS1. The oncologist sounded more hopeful and positive based on the scans than first time I met her - she even said I might be 3A/3B. Treatment options she gave me was either start with chemo or wait to see if the insurance approves for the ROS1 and start with that targeted therapy. Given lung cancer is not her "specialty", I then met with another oncologist at the same clinic who does specialize in lung cancer. Well, Dr.Evil (that's what I decided to call him behind his back) was nothing but bad news. He even said PET/MRI are like looking down from 20,000 feet and that he's concerned I might be stage 4. He continued to say ROS1 drug is only effective for stage 4 and that the insurance won't even approve for stage 3. He ended his Dr Evil talk with the survival rate of 10%. I wished I had the book "The Anatomy of Hope" written by Dr. Jerome Groopman (an oncologist) with me, so I can throw at his callous face and tell him to read the book. At least both oncologists said: "you're so young and healthy, you can handle chemo". Um, thanks? As my first chemo day (coming Wed) is approaching, I still feel like my world is spinning and it's all just surreal. How is this happening to me? I've done everything right and I feel fine, how is it possible I, of all people I know, have lung cancer of all things??? Will I someday be able to go a full 24 hour without crying? Link to comment Share on other sites More sharing options...
BridgetO Posted January 7, 2018 Share Posted January 7, 2018 Hi MB and welcome here. I'm sorry about your diagnosis and about Dr Evil. Have you thought about getting another opinion from a different lung cancer specialist? It's really hard to think about so many things when your head is spinning! In regard to survival percentages and other statistics, I suggest reading this article: http://www.stephenjaygould.org/library/gould_median-isn't-the-message.html. I think it's importlant not to get too hung up on the stats. Something else to remember about 5 year survival rates is that by definition thay will be based on people who started treatment at least 5 years ago and probably much longer. There are new treatments and new information about lung cancer coming out all the time, things that weren't available 5 or 10 or more years ago. I'm also a never-smoker and I stopped drinking MANY years ago. I've had 3 unrelated cancers. Smoking is a risk factor for lung cancer but not smoking is no guarantee of not getting it. More is unknown than is known about why one person will get any cancer and another won't. I think it's largely the luck of the draw. This is actually reassuring to me: I didn't do anything to cause my cancers, there's no judgement involved. And even if I have done something (unknown what) to increase my risk, it doesn't matter. Cancer happened and I dealt with it. I have no evidence of disease now. I do have long lasting side effects of treatment, so I deal with those daily, I'm happy (and somethimes a bit surprised) to be alive. My life today is good and I try (not 100% succesfully) to enjoy my time and not get too bogged n worry. I hope that you'll stay with this forum. It's a good place to find information, support and hope.Let us know how we cqn be helpful Bridget O Link to comment Share on other sites More sharing options...
Steff Posted January 7, 2018 Share Posted January 7, 2018 MB, Forget Dr. Evil! You shouldn't have to deal with someone like that. And forget statistics. Lung cancer is survivable. Like Bridget said, the statistics now look back 5 plus years. So many more lung cancer treatment options are available and successful in treating lung cancer. My mom had her initial diagnosis in 2015. If she was diagnosed in 2017, the follow up treatment after her lobectomy would have been completely different and probably more successful. If I were you, I would be considering a 3rd opinion since both docs have differing opinions on staging and I am assuming you don't want to return to Dr. Evil. If you are anxious to get started with treatment, you can always begin the current recommended treatment plan why you are going through the 3rd opinion and any other tests they may have. Link to comment Share on other sites More sharing options...
Tom Galli Posted January 7, 2018 Share Posted January 7, 2018 MB, Welcome here. On the whole, I'd rather you didn't need this forum. But if you have lung cancer this is the place, so I'm glad you found us. Here is some information that might help you make sense of this disease. I learned many of these lessons during my extensive treatment and hope they prove helpful. Will you be able to get through a day without crying? Yes but in truth, not for a while. I hope family and friends are nearby. They likely won't understand what you are going through but are a convenient shoulder to cry on. We on the other hand completely understand. When the overwhelming sadness starts to settle in, read about our experience. There is a wealth of good news stories of survival and life well lived on this lung cancer forum. Bridget pointed you toward Stephen J. Gould's essay The Medium Isn't The Message. Besides learning that statistical mean or medium has little relevance to you as an individual, Gould cites his belief that attitude matters in fighting this disease. I firmly believe attitude matters; one will do better believing treatments and outcomes will be good. But, lung cancer is persistent. For most, treatment is rarely one and done, so prepare for the long game. The treatment game is winnable. Many prevail and our collective message is if we can survive, so can you. Stay the course. Tom OBTW - Kick Dr. Evil! Link to comment Share on other sites More sharing options...
Susan Cornett Posted January 8, 2018 Share Posted January 8, 2018 MB, As the others have said, find another oncologist. You don't need doom and gloom. Lung cancer patients are surviving longer and better thanks to new and improved treatment options. You need a super doc who looks for the silver lining in this cloud. As for statistics, I ignore them. When I had my first meeting with the oncologist, he provided me with a printout that was soul-crushing. After reading what others on this forum said about statistics, I wadded up that printout and threw it away. I haven't looked back. As for crying, it will come and go. I was doing okay until my staging was revised due to finding a tumor outside my chest. My world started caving in around me so I went for an anti-depressant. I still have the occasional day here and there, but for the most part, I don't cry. Although part of my brain reminds me I have lung cancer, the rest of my brain says "nope, nothing to see here - plan a vacation, buy a car, live your life". If you have any questions about your treatment (side effects, etc.), let us know. We've all dealt with those chemo drugs and might have some experience from which you could benefit. Lean on us. Link to comment Share on other sites More sharing options...
BridgetO Posted January 8, 2018 Share Posted January 8, 2018 Yes, let's hear it for antidepressants! Like Susan, I've been taking an antidepressant which helps keep my mood on an even keel. BridgetO Link to comment Share on other sites More sharing options...
MBinOregon Posted January 10, 2018 Author Share Posted January 10, 2018 Thank you, Everyone. It's sooo nice that you know EXACTLY what I"m talking about, how I'm feeling and what I'm going through. At this monday's "tumor board", my case was discussed (Dr Evil, other oncologists, pulmonologists, oncology radiation docs, thoracic surgeons, etc attend) and they agreed that they should confirm/finalize my staging. So this morning, I had brochoscopy to biopsy lymph nodes. I was told - If it's stage 3, chemo first; if it's 4, ROS1 drug (crizotinib) first. If the targeted therapy drug works for 4, why not also for 3??? grrrrr. I'm still planning getting an appointment with yet another oncologist (another lung cancer specialist) to see what they say. Out of curiosity, any of you have experiences with this drug? Thank you... Link to comment Share on other sites More sharing options...
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