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I am a 68 y.o. male who was informed by my pulmonologist that my lung biopsy was positive for small cell lung cancer. This diagnosis came with a feeling of relief that the SOB and fatigue I've been experiencing for over a year has a basis in reality and wasn't all in my head. I've been having PET and CT scans, blood work and numerous MD visits to my primary care, pulmonologist, and Sports Medicine doctor. It's been hard to focus on anything else but my health. I've been a smoker all of my life and take responsibility for my part in this illness, but don't feel I'm deserving of this fate and that I brought it on myself. Smokers and non-smokers can get this disease or don't get this disease, and it's just way the ball bounces.

I moved from a provincial upstate NY town to NYC in 1969 to attend NYU and pursue a degree in occupational therapy. It was an extremely rewarding career and living in Manhattan for almost 40 years was the most enriching and exciting time of my life. Working in healthcare, and having a close community of gay friends and colleagues, exposed me to all the horrors of the AIDS epidemic in a very intimate way, in the 1980's. It was during those years I was forced to look at mortality and ways a person can learn to be comfortable with dying, living life to the fullest with great dignity, and being proud of one's accomplishments and relationships and accepting life's ending as natural and part of a process. I had to learn to let go of my intense anger that so many young, talented and valuable people had to go through this nightmare. I was glad that I never contracted the disease, but had a great deal of "survivor's guilt trying to understand why I was spared while so many people close to me had such agonizing final months. Living in NYC, there are all kinds of psychotherapists and groups that were part of normal NY'er routines and I was lucky to find excellent clinicians who helped me make peace with my inner demons and childhood traumas and learn healthy ways of dealing with my emotions.

I worry about suffering and not being able to breathe, but I am not fearful of dying. I don't have a lot of regrets and accomplished many of my life's goals and have a good network of friends, although they are not nearby. I worry that my spouse Tony will have a hard time watching me waste away as I become more dependent on him to take care of me. He's seven years older than me and we assumed I'm the one who would end up being the caregiver. We just retired and were looking forward to many quiet years together, visiting family and friends, pampering our dogs, and taking short vacations to new places.

While living in upstate NY, my MD recommended I have a lung CAT scan since I was a long time smoker and I followed his advice. I had complained of SOB and generalized malaise for a long time and thought after all kinds of other workups and no answers, this was an important avenue to pursue. The radiologist's report said I had two small lesions on my right lung but though they were probably benign and to have a follow-up CAT scan in two years. Nothing to be concerned about. I wonder if a lung biopsy had been performed at that time how much further ahead of the disease progression I would have been. It would have been to err on the safe side, but it's just a "what if".

I am already limited in my ability to ambulate for more than 50 feet without becoming very short of breath, with pain increasing in both my hips the further I go, so going too far or engaging in more strenuous activities is not an option at this time. I can adapt to my current situation, but I am saddened by how quickly my vitality and endurance is slipping away. I see the oncologist next Thursday and hope to find out what stage I'm in and what my treatment options are. I'm positive that I can make some informed decisions that will extend the quality of my life and giving me some time to make peace with my dying and say goodbye to those who have meant so much to me throughout my life.

I am grateful I have found a web site where I can learn from and share my experiences in living with a diagnosis of lung cancer. I plan on researching area support groups as I find honest sharing  and articulating what's going on with me and getting feedback from others in the same situation is a comforting and life affirming experience.

 Thank you for allowing me the space to express myself and I look forward to learning and sharing with you on this particularly personal journey.

Kind regards,

John

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Hi John!

I'm sorry to hear about your LC diagnosis. The good thing is that now that you know, you can get onto the treatments options.

You're definitely right in that both smoker and non-smokers get LC so you shouldn't beat yourself up. My dad was diagnosed with NSCLC two years ago (68 yo) and he has never smoked a single cigarette in his life!

I wish you all the best as you continue this journey and battle with LC! Fight on!




Sent from my iPhone using Tapatalk Pro

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Hey, John!  I'm right down the road--Gloucester Twp!  I love Collingswood; lived in Haddon Twp for many years.  If you ever want to meet up for coffee and a chat or something let me know.

I'm brand new to this too, and mine was also picked up by a screening scan (though I have zero symptoms).  I've got a few nodules but only one with SLIGHT changes since last year.  I'm scheduled for lung surgery a week from Monday.  I love my docs.  The definitive diagnosis will be after they remove the tumor (and, most likely, upper left lobe and lymph nodes), but the one suspicious nodule was the ONLY thing that lit up on the PET scan, so I'm pretty hopeful that there's been no spread.  Never know for sure with this stuff, though.  

I guess you had a biopsy or something?  PET scan?  How was it actually diagnosed?

I'm a lifelong smoker, too, though I transitioned to e-cigs ALMOST completely a couple years ago, and when the nodules first turned up over a year ago, I gave up the regular cigs entirely.  Glad I did, it probably improved my lung function which I'm hoping will make the surgery easier to tolerate.  I feel exactly as you do--sure, I wish I'd never smoked but hey--we all make choices in life and nobody has a crystal ball to know how they will turn out.  I'm being treated at Cooper's MD Anderson, how about you?

We can beat this thing!  The treatments are so AMAZING now.  I feel pretty much the same as you do on the mortality thing--being helpless or in pain scares me a lot more than the prospect of dying.  Quality of life is SO important.

Hope you get some encouraging news at your appointment next week, along with a good battle plan!

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Hi, John.  Welcome to the club that no one wants to join.  We're glad you're here.  I wouldn't give your smoking history another thought; doesn't matter.  What matters now is that you assemble a great team of medical professionals and develop a plan to fight.  LexieCat asked about a biopsy; if you've had one, do you know if the pathologist tested it for any markers/mutations?  For some, lung cancer can be fought with immunotherapy if certain markers/mutations are present.  

This forum is full of wonderful people, long-term survivors, understanding souls who've stood in your shoes.  Tony might be interested in joining so that he can benefit from the caregiver discussions.  

Let us know how we can help and please keep us posted on your journey.

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John,

Welcome here.

No one deserves to get lung cancer.  Yes, there are behavior associations but the only fundamental requirement for a lung cancer diagnosis is a pair of lungs.  In the event you've not started your research about small cell lung cancer, here is a good first pass resource.  Immunotherapy discoveries are also having an impact on small cell lung cancer.  Read about this promising method here.  And, radiation remains a very effective treatment means enhanced by new methods -- SBRT and IMRT that are explained here.  I was one of the first Dallas area patients to receive newly approved SBRT radiation (CyberKnife) for my lung cancer in 2007 and it likely saved my life.  You might discuss all these alternatives at your forthcoming consult with your medical oncologist.

At this juncture, I'd like to suggest you listen to Stephen Jay Gould's essay "The Median Isn't The Message" here.  Gould was a noted Harvard Evolutionary Biologist who was diagnosed with an almost always fatal form of lung cancer -- mesothelioma. Reading this in 2006 while I was in the throws of treatment, after many failures, and onset of severe depression, changed my prospective and likely saved my life.  My treatment experience was long and arduous.  But many of us here have endured similar treatment journeys and are still alive.  So your take away from this point is: if we can live, so can you. 

You'll likely have many questions as you start your treatment and this is a good place to ask.

Stay the course.

Tom

 

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