Newly diagnosed Lung cancer -trying to get to an accurate diagnosis?

Hello Cindy-
I'm so sorry that you and your husband are going through this. I cannot imagine what you are feeling with the multitude of tests and not having a definitive diagnosis. I hope that you return after seeing the oncologist on Wednesday and let us know what they say. I'm sending you well wishes, peace and I really hope you both find some answers. Please keep us updated.

Thank you!

Hello- When I had my first lung cancer I had a multitude of tests too. They are difficult because not only are they invasive but you have to wait for the results, keeping us on tenterhooks. Secondly we have to return to the hospital many times, increasing the chances of picking up something. Then there has to be consults and if things are uncertain, more decisions have to be made. I'm so sorry that you both have gone through so much, and as difficult as all of this is thank goodness we have so many options to chose from. I wish you the best of luck. try to stay strong.

Hi Cindylb. I remember when my husband was being diagnosed, what a meandering path it was. They thought it was his heart, then acid reflux, then emphysema. The better part of a year later after many many tests and diagnostic surgeries, we found it was indeed lung cancer. Now 18 months after that point he is cancer free and slowly gaining strength. It is a wretched thing to go through and I'm pulling for you! Be strong! I kept telling myself, "I can eat this elephant, one bite at a time!"

Hello Cindy-
I am so sorry to hear about yours and your husbands journey! Hopefully, you will find the correct course of treatment.

In May, 2015, my wife was treated for NSCLC in her right lung with surgery, chemo, and ultimately immunotherapy (Opdivo), but the tumors continued to grow and the cancer metastasized to the left lung.

Finally, in 2016 our oncologist at Mayo ordered a Molecular Study, from which he determined the tumors were from a breast cancer mutation! Fall of 2016, he changed her treatment to a clinical trial, which seems to have neutralized the tumor growth with minimal side effects. She has now had 15 months of infusions every three weeks with a remarkably good quality of life!

Bottom line...I would recommend you ask your oncologist to order a molecular study of the biopsey to insure the proper course of treatment. He may need to do another lung biopsy as the original may not have yielded a large enough sample. That is what was required for my wife.
Best of luck to you and your husband!

Thank you for sharing this! I hope your wife continues to do well on her treatment plan. I am a breast cancer survivor of 4 years but my diagnosis and treatment were much more straightforward. I wasn't prepared for what my husband is going through but I now see why the doctors are being so particular about the testing and diagnosis. We need to know exactly what we're dealing with here. My husband's latest biopsy was of a lymph node and they ordered additional testing with that to get more information.....Your post has really helped me today and I appreciate your support and you taking the time.

Thank you! I'm sorry for what you've gone through on your meandering path but you have given me some comfort in knowing we're not alone on the 'meandering path'. My husband has had symptoms of 'something' for over a year now....perhaps this cancer, everything else checks out fine. So glad to hear your husband is cancer free now and recovering. I will be borrowing your 'one bite at time elephant analogy' as we move forward.

We are now at about a 70% diagnosis of Lung Cancer with more pathology and tests to come. The last biopsy of the lymph node came back inconclusive but they have pretty much ruled out upper GI cancer and Kidney Cancer. Our diagnosis to date is Stage 3 Lung Cancer with a small tumor in the right middle lobe and one active subcarnial lymph node. The options presented early on here for treatment is radiation and chemotherapy. He (and I) are both worried about the side effects and intensity of the chemotherapy (we've seen this at it's worst with my sister's Stage 4 Lung Cancer treatment 8 years ago). The oncologists say that the primary symptom of the treatment would be extreme fatigue and that they can manage the related stomach symptoms (the nausea and diarrhea). What has been everyone's experience if that's the option we will have for treatment? My husband is very hesitant to do the chemo and that would give him maybe 1-2 years where treatment may increase that up to 5 years or more. I'd love to get some 'real, on the ground' feedback from patients who have experienced this recently. They say they have made some progress improving the side effects symptoms since I cared for my sister 8 years ago.....it was pretty grueling for her. Thank you!

There is no doubt this is respectfully a sensitive matter when diagnosed with lung cancer.
My proper diagnosis and treatment was at Mayo Clinic. I trust my life in their hands.
At my 10 year celebration of being gratefully alive, one of my doctors who is also a leading lung cancer researcher held up the recent New England Journal of Medicine and said, “Unlike 10 years ago there are now 1100 therapies for lung cancer!”
I will never forget the two years “proceeding my proper diagnosis” when local small town physicians thought I had asthma, not lung cancer!
If you are confident in your treatment center and physicians and they recognize the importance of new therapies and the amazing lung cancer treatments discovered in the last few years, think
about your quality of life. I continue to see many people are living with cancer for years.
I would personally ask every question regarding diagnosis and treatment and proceed. Resiliency is remembering to enjoy life everyday. Many of my physicians have told me “Attitude is 50% of surviving”!

All my best. Let’s stay connected. You both are in my thoughts.
hugs

Thank you so much! Your perspective and first hand experience is so very helpful and appreciated. Eating that elephant one bite at a time!