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hello, my name is raymond johnson and i am 61 years young and this year i have been dx with nsclc squamous. it all started because i wanted to quit smoking, i wanted a cxr just to get a baseline. got a cxr with a appt with a pulmonologist the following tuesday. i just so happened be sick, just the common cold/flu, so i thought. the dr examined me and told me i had a mass on my lungs and have pneumonia. my journey begins. had a ct scan with contrast and a lung biopsy. all i was told that i had lung cancer. then the pulmonologist goes on vacation. still no answers. then i get a phone call that says i have an appt with the oncologist dr and radiation dr. still nobody is telling me why. the chemo dr , after a month from first dx, tells me i have nsclc squamous stage 3a. tells me i will get chemo once or twice every 35 days forever. this does not sound good. i go to the radiation dr and she told me she with give me 35 txs of radiation to get rid of this cancer. but wait she then tells me maybe i should see a surgeon before her treatment. off i go to the local thoracic surgeon. he tells me he might just take a little bit of lung , maybe just one lobe,maybe two lobes, maybe the whole lung. there is too many maybes for me. so i have had prostate cancer back in 2010 and was treated by memorial sloan kettering hospital in nyc,ny. i told my pcp to make some phone calls and to get me an appt. got me appt, got another ct scan another pet scan another brain scan. involved in a trail study getting atezolizumab before surgery. got my first dose on 8 jun and will get my second dose on 27 jun and surgery is scheduled for 20 jul 17. the side efects been hitting the last few days, coughing up blood clots feeling very tired but i guess there is no pain yet, anyway thanks for listening. 


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Hi, Raymond.  I'm glad you found us - we're great listeners because we've all been in your shoes.  Based on your post, it sounds like there is a lot of  uncertainty with a treatment plan.  Do you have a new oncologist and surgeon or are you still using those that were unclear as to how to proceed? Has your surgeon indicated if you'll have the VATS (robotic) surgery or the traditional surgery? Both are effective but VATS is less invasive than the traditional surgery.

Any questions we can answer for you?  There is a wealth of knowledge here, especially from the "old-timers".  

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i have to add a few things about me. i retired in 2008 as a new york city fire department paramedic and at the same time as a site coordinator for a emergency medical training site in the air force in rank of a master sergeant. so i have a little bit of medical knowledge. so when this all started i went to the local hospital. its a good local small town hospital.

but when i was not getting the answers i needed to educate me on this disease, it was time to bring it the experts. so yes i have a great oncologist and a great thoracic surgeon at sloan kettering. but from my past experience with sloan i also have my pcp involved to take care of me after surgery. its just not knowing whats happening and the frustration, i have a bass boat but when i have bad days the weather is nice when i have good days the weather is bad. since i retired im 2008 i have been practicing my trumpet again, just joined the local community band, with all the anxiety, oh did i fail to mention i have ptsd, i can't practice, so no fishing no playing music. have to reevaluate, i am strong.

i will survive. but i will witch and rant. laughing until my sides hurt .

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Hello Raymond. Welcome here. 

We share a diagnosis and I had pre chemo and radiation to shrink my tumor and allow a pneumonectomy of my right lung. 

Sounds like you are aware of the need to be your own advocate when dealing with complex medicine and lung cancer is very complex. Your PCP's involvement is a plus. Mine was invaluable in setting up my treatment team and "nudging" them into action. 

Make sure your doctors know you are coughing up blood. 

Stay the course. 


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