Hi all -
Yet another newbie here. I’ve been lurking a bit and have been astonished at some of your success stories! That said, although I keep telling myself it will be possible for me, too, I’m terrified. And the constant waiting for test results is making it worse. Here’s what little I know at this point. I’m 65, have been healthy as a horse for my entire life with the exception of being diagnosed with Barrett’s esophagus about 7 years ago. I then promptly did everything I was told (gave up the coffee that I drank by the pot, not a cup, no carbonated beverages, drank only herbal tea, etc) and my next 4 scans showed no Barrett’s pathology. I did continue Dexilant because I still had symptoms and occasionally had to do a few weeks on double if I had a flare-up. In April, I had a bit of cough - common with a flare - and the increased med helped. But when I went back to normal dose, it got worse but still occurred at times when I had just eaten or was bending over —again consistent with GERD/Barrett’s. Then, in late June, my ankles started swelling. First concern was DVT, but none found. A week of Lasix didn’t fix it, so off to a CT angiogram... and then the bottom dropped out. Initially seen was a 3cm mass In right lung and a few lymph nodes. A few days later, the PET showed more lymph nodes, one at the collarbone which I’m told makes it stage 4, plus a small node on the Left adrenal. We decided to go to Duke, where we lived and received care for many years and always have returned for anything serious. They drew off a lot of pleural effusion but were unable to use it for testing purposes; did do a brain MRI which was, thankfully, clear. Oncologist seems sure it is NSCLC, not sure why. He also thinks the pleural effusion is malignant, although they couldn’t fined any cancer cells in it. I’m back there now tomorrow AM for biopsy of the easy to reach lymph node, after which we have to wait till 8/21 for all the molecular testing to be in so we can meet with the oncologist to discuss treatment plan. Oh, and today their radiologist reviewed the PET (done elsewhere) and seems to be interpreting differently, mentioning something about the bronchus. And the original 3cm mass was not visible on my late October X-ray, so seems to be moving very fast, which makes me quite frantic about waiting around doing nothing for another two weeks. My husband is 83 - also healthy - and I can’t bear the thought of not being there when his time comes. With a 17 year age difference, we never imagined such a scenario. I am very tough and strong-willed and willing to do whatever I have to. Do I have a chance of beating this based on your collective knowledge? Truly trying to maintain a positive outlook but all these unknowns make it nearly impossible.
Susan
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