katiek Posted July 4, 2017 Share Posted July 4, 2017 Good evening to all. My name is Katie and I live in Western North Carolina. I am guilty of having lurked around this forum, partly because I was so blasted angry with a diagnosis of lung cancer. You see, I am a 2-yr breast cancer survivor, and I can assure you that apart from the obvious difference, BC and NSCLC are worlds apart. Some family background. In 1972 at the age of 45, my mother died from metastatic melanoma. I am the eldest of five and to date only my surviving sister has escaped a cancer diagnosis. Our youngest sister was diagnosed with an aggressive breast cancer at the age of 44, and she died just before her 50th birthday. The youngest of the family, my brother Val died from esophageal/gastric cancer within two months of diagnosis. My surviving brother is a melanoma survivor. At the risk of sounding pedantic, we take cancer very seriously in my family. (Our dad had heart disease) My breast cancer was IDC, but it had not gone beyond the breast and unlike my sister's, it was not HER/2+. Christine was diagnosed in 2005 and no one talked about the BRCA variants back then, at least not around here. My tumor was tested, and apart from having some unknown variants it was presumed unlikely to return. In January of this year, a X-Ray indicated either an infection or nodule in my left lung. After a course of antibiotics did not resolve my coughing I had a CT which indicated an "irregularly shaped mixed-density lesion measuring 26x11x15mm", as well as a nodule in the right lung that measured 11x11mm. The first concern of course was that it was metastases from the breast, so the first biopsy was taken from the larger tumor in the left lung which was stained to rule out BC, and diagnosed as NSCLC Adenocarcinoma.. My tumors present as "ground-glass opacities", a feature of which I am told means that there's a high probability of me developing more, so preservation of lung function is a priority. The smaller tumor in the right lung was also biopsied, and it's presumed to be identical in nature to that in the left. I've seen recent postings about biopsies not being done or even necessary when a lung tumor is smaller than 1cm, and I am not understanding that logic. As for the PET scan, I had one after the initial biopsy, and here you have it: Low-level FDG accumulation in the region of the previously biopsied irregular left upper lobe nodule (SUVmax 2.31) is less than the blood pool activity. No significant focal FDG accumulation is identified elsewhere in either lung. And here is the Impression: The irregular, biopsy-proven malignancy in the left upper lobe has low-level FDG accumulation. No FDG-avid adenopathy or FDG-avid extrathoracic metastases are identified, but given the relatively low FDG avidity of the primary lesion, this examination may be less sensitive for detection of metastatic disease. Additionally, the other known mixed density and ground glass lung nodules may not be well characterized by PET due to their morphology. Follow-up CT scans are recommended. PET scans are not infallible! Had biopsies not be done, my cancer might not have even been found. And do you know what was said to me at the first Lung Cancer Conference which took place after the PET? The good news is that you don't have cancer anywhere else in your body! Which is simply untrue as none of the docs can tell that from my PET. Undoubtedly other PET results are clearer than mine, but if I hadn't turned to Dr. Google, I would have been blissfully (and in my opinion, ignorantly) unaware. My treatment to date has been stereotactic radiation (Cyberknife) to each lung, which involved fiducial marker placement around each tumor, which was incredibly hard on both lungs. I don't know the grade or staging of my cancer because to completely remove the tumors would mean removal of those parts of the lungs, and the docs want to preserve my lungs' capacities. I understand the reasoning, but it feels like I'm in limbo, just waiting for the follow-up CT next month to see how the tumors responded to the radiation. My onco sent me to a thoracic oncologist at Duke who told me that the next step will be testing genetic testing of the biopsies; if they have any of the variants that can be targeted with less potent versions of the chemo or immunotherapies designed to treat Stage IV mets. Also, such testing could help us know if the tumor in the right spread from the left, or if they're both primaries. I'm pretty much done, thanks for those who've hung in with me here. I will close by writing that I've made the decision to not undergo any more radiation treatments, altho I will take chemo, etc. This may sound radical and crazy but I've been researching medical cannabis treatment of cancer, and I believe that it's a viable option for me, legality aside. Happy Fourth to all! . Susan Cornett 1 Quote Link to comment Share on other sites More sharing options...
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