hard2handle Posted January 26, 2012 Share Posted January 26, 2012 I have to be honest, I'm still struggling with disbelief and sporadic bouts of "why me". I've read enough now to understand that my demographic may be "rare" but not sure if it is uncommon anymore. I think my case illustrates the challenges of getting a diagnosis and staging quickly, especially in someone without symptoms or has other masking issues. I'm pretty much over the "what could I have done differently" thinking. If anything, the blood clot surfaced this sooner because based on how I feel now (very good), I would not have been to see my PCP yet, and probably not for some time - i.e. a planned physical next fall. That's all I can muster for now. It felt good to write this out sequentially (still shaking head in disbelief ) <> 25-Oct-2011 - suspected blood clot on Rt leg while on business trip out of town and went to ER. No PE symptoms so no chest x-ray or CT done at the time. Discharged with Arixtra and Coumadin. Flew home next morning. 28-Oct-2011 - PCP orders chest x-ray at my request as I was ideopathic for DVT and had done some quick google research on malignancy as cause. Results show focal consolidation on lower rt lobe. Recommend follow-up CXR in 1mo and correlate with symptoms (I had none). On coumadin (3mg). Subsequent dopplers show no evidence of that clot and DVT may have been superficial. I have had some "migratory" phlebitis episodes while therapeutic on coumadin since (painful but essentially "harmless", in grand scheme of things now at least). 8-Dec-2011 - I paid for a private "wellness" scan (low radiation, no contrast version of a CT called an EBT) in place of CXR. (I was still determined to find "source" of blood clots because despite travel, I had "nagging" feeling / parnoia that it was something else). Results showed lymphadenopathy and a 2.5cm nodule 12-Dec-2011 - PCP orders CT with contrast that confirmed nodule and lymphadenopathy. Only symptoms are a little extra phlegm and some rt shoulder pain blade that comes and goes. Neither viewed initially as significant due to reflux / digestive issues I had been battling for years and lots of rowing, weightlifting, and tennis. I was in the process for being evaluated for Chron's and/or RA since autoimmune issues run rampant in my family and also have a tie-in to clotting. The lymph swelling was significant enough to push for tissue samples. 28-Dec-2011 - Bronchoscopy to examine lung / airways and try to get tissue. Got samples from carina, paratracheal lymph, and lavage of rt lobe. Wet read was inconclusive. Airways were a bit inflamed and dr's leaning towards maybe lymphoma or inflammatory issues related to autoimmune or infections. 3-Jan-2012 - Got "the call" from pulmonologist. Primary lung adenocarcinoma confirmed in carina, lymph, and cell washings. Now, I know there were definitely many things pointing towards a LC Dx but was blown away at the time. I was initially staged a IIIA but if I understand correctly, carina makes it a IIIB by default. There were no additional nodules or lesions, just cells present in those areas. 5-Jan-2012 - Met with an oncologist at hospital where all of the diagnostic work was done to determine next steps, additional tests, etc 9-Jan-2012 - PET/CT, Brain MRI in the morning. Meet with second opinion oncologist and thoracic surgeon at local NCCN cancer hospital. I brought the scans with me and they read "on the fly". Said MRI clear and PET correlated to last CT. Some discussion about getting more tissue and IIIA v IIIB that was unresolved when I left. 10-Jan-2012 - Met with first oncologist and was surprised with 8mm "lesion" on pelvis with low uptake that was not mentioned the day before. Recommended further investigation. Second opinion less concerned but agreed that MRI to rule out met was good idea. 12-Jan-2012 - MRI confirmed no lesion but small stress fracture with swelling that caused the PET uptake. Still concern that cancer activity caused weakness in area. 16-Jan-2012 - CT guided biopsy on pelvis. IVR confirmed he "got good sample" and "hit the spot" in the room with pathologist 17-Jan-2012 - Met with Radiation Oncologist at NCCN hospital where I decided I would do any treatment. Since the IIIB -> IV staging implications of radiation were TBD based on the pelvis biopsy, we worked on a "Plan A" and "Plan B". They called pathology at the other hospital (I was kind of "in between" at this point) and the wet read was negative for cancer. I kind of compartmentalized this because I didn't want a let-down if it changed after all the slides and stains were done. 18-Jan-2012 - Pathology / Radiology confirmed no cancer in pelvis. Suspected sports injury or maybe some arthritis (I think there is still a rheumatoid / chron's-ish "overlay" to everything else going on with me). Follow-up MRI suggested at some point in future. 19-Jan-2012 - Appointment to do radiation marking / planning CT, etc. Plan to start on 1-Feb-2011. 6.5 weeks, approx 62-64gy. Will most likely hit esophagus hard with carina, lymph involvement. 23-Jan-2012 - Met with oncologist at NCCN center (my primary now). Specializes in lung cancer and very tight integration across thoracic surgery, radiation, and medical oncology. 2 weeks of Cisplatin/Etoposide, overlaid wk1 and wk5 of radiation, starting 6-Feb-2011. Now - working out, hydrating, researching, reading, "fattening" up a bit (i'm pretty thin to start with and not much room for a lot of dehydration and/or missed meals during treatment). Mutation testing is out to the labs and awaiting results. Quote Link to comment Share on other sites More sharing options...
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