Coping with A- Symptomatic Stage 4 Metastatic NSCLC

[Gregoryy]

By the title it may seem like a misnomer, more particular, the words “Coping with Asymptomatic……”. When I started the journey over four and a half years ago, I was  diagnosed  with Stage 4 NSCLS Adenocarcinoma, it was an incidental discovery then being without symptoms as I remain today, although now with some rib pain as it has spread to the bone and brain, which was treated successfully. Up to this point my illness almost seemed academic, you go to the Cancer Center, blood work, see the Doctor and then go for chemo, week in and week out until scans. Over time I began to feel that I have a disease that tells me that I don’t have a disease. I was diagnosed with a catastrophic disease that came with a big question mark. I had no symptoms, just grainy black and white computer images from CtScans that described my illness. As an example, if you fell and broke your arm, you would go see a doctor, an X-ray, a treatment plan with a description of some sort of conclusion, you would have a beginning, a middle and an end point, you would have pain that you could put your finger on, treatment that you can feel yourself improving and some sort of timeline that you could return to work.  I feel in my case that cancer is both physiological and psychological, but because I remain asymptomatic, i feel as though it is 100 % psychological, its a full time job. Exploring the internet for answers is a waste of time, you can drill down all you want and not find the answers you are looking for. I realize this mindset is rhetorical, I know the answers to my questions and that although we all have cancer, there isa myriad    of variables between us. I went the Oncologist the other day following a CtScan last week, the cancer has spread to bone ( the eighth rib ) and while it has progressed in the lungs, the rate of progression has increased, ie, if in the past it took 6 mo’s for this to progress 20 %, it now takes three months to increase 20 %. I have been blessed to remain without symptoms this long, don’t get me wrong. I have sought help in changing my mindset and it is working, but it is frustrating in both living it with that mindset and explaining it, I am work in progress !! Thank You all and stay well !

[Tom Galli]

Welcome Gregory,

If you are coping, you are doing a much better job at dealing with your lung cancer than I did in my treatment journey. My experience was 180-degrees out of phase with cope.

I had one symptom of lung cancer that got me diagnosed--coughing up blood. I've had lots of symptoms from treatment side effects but treatment also resolved my diagnostic complaint.

Treating this disease systemically is a slog through scans, infusions and appointments. It was for me a fearful journey including 5 recurrences after no evidence of disease yielding treatments. Progression and recurrence episodes try the soul. So I know what you are experiencing. But consider my circumstance as it relates to your situation. I was diagnosed in February 2004, 18 years ago, and experienced every form of treatment but immunotherapy. Most of those treatments did not work. But one did and one is enough and if I can live, so can you!

Continue with your "work in progress."

Stay the course.

Tom

[LouT]

Gregory,

Glad to see you moved your post here.  You will be hearing from more folks soon.

Lou

[Karen_L]

So sorry to hear that the stupid cancer is spreading.

I have found the mental part of dealing with lung cancer to be the most challenging part thus far. The people who have the deepest understanding are those going through it, or who have been through challenging treatment for a different cancer. Others, even close family members, see me without symptoms and have a hard time accepting the many ways things could go from here, or the challenges of untangling my mind and emotions related to having stupid lung cancer. I see a counselor weekly and it has helped me immensely-- my family members are on their own journey through my illness and they cannot be expected to take on all my stuff, too. So I share what makes sense in the moment. In all honesty, I feel I don't owe anyone big explanations. When I was really struggling, I would just say, "I'm having a bad cancer day and I'm crabby and upset and I do not want to talk about it." And sometimes I would want to talk about it, and I would let them know that. 

Best wishes on whatever comes next.

Karen