Boyfriend recently diagnosed with Stage 3A NSCLC

[SupportingTroy]

Hello all, I am new to the forum and pretty new to the cancer world.  I have experienced very little with cancer as my loved ones that have been diagnosed in the past were older and chose not to be treated.  My boyfriend (45 years old) started having "allergies" in Feb 20.  By April 20 he had signs of sinusitis but refused to go to the doctor.  May 20 he started wheezing etc when he coughed.  Mid May he felt so bad he stayed in bed all day and finally agreed to go to an urgent care that evening.  They diagnosed him with pneumonia/suspect COVID (he ended up being negative).  He quit smoking that day (partly because he didn't even have energy to get out of the bed).  9 days later, he wasn't any better so he went back and they treated him again for pneumonia.  June 10 he went back again because he still felt horrible (after I begged him to go) and they sent him to the ER because they "saw something they didn't like."  Due to COVID, I was not allowed to go in with him but they started working him up right away.

They did a CAT scan while he was in the ER and immediately decided to admit him to do a bronchoscopy with biopsy, which was done June 12.  They discharged him that day with orders to get a PET scan.  The biopsy came back as squamous cell carcinoma of the lung and the PET scan came back showing the tumor being 5.4 x 5.6 in the upper left lobe.  We had issues getting him in with the Dr he was supposed to see so we contacted University of Md Baltimore Greenebaum Cancer Center.  They immediately put us in contact with a thoracic surgeon, who we met with 6/24.  He told us that my boyfriend needed to have surgery right away to remove the whole left lung.  He also said he was passing the case off to a higher up in the hospital, who we met with virtually the next day.  After that virtual appointment, they had my boyfriend scheduled for all types of tests pre-surgery.  On 6/26, that doctor presented the case to the tumor board and another Dr spoke up about a trial that **MAY** be able to save his lower lobe of the lung.

The main symptom that my boyfriend has had is severe coughing (no blood, just occasional sputum).  He declines that he is SOB but he can't walk around the house one circle without stopping to catch his breath (which he also declines).  We haven't spoke with the Dr that suggested the trial yet, that comes in two days, but we already have concerns.  His Dr said it would be 2-3 months of treatment and then surgery to remove the upper lobe.   This doesn't solve the problem of the cough.  He has been bed ridden for a week now, as it is the only way to keep the cough halfway calm.  We have tried cough drops, sugar free candies, warm tea with lemon/honey, gingerale, cepacol drops, throat spray, etc.  My boyfriends inclination is to move forward with the surgery ASAP so that the cough is gone, and then go through treatment.

Can anyone give any advise?  For those that have faced the same decisions, what did you do and would you make the same decision again? 

[Donna G]

Hello Troy's girl friend. I was diagnosed with Stage 3 B in December 1997.  My Doctor gave me 2 chemo s and daily radiation for several months . 

The tumor had shrunk , so they did surgery and  as it was planned, it was followed by more chemo.  As you can guess as I am able to give you this message, all was successful

and I survived.  Please keep us posted on how you two are doing.

Donna G

[Tom Galli]

Troy's Boyfriend,

So his diagnosis is squamous cell non small cell lung cancer that is in the upper left lobe of the lung. At 5.5 inches, the tumor is quite large and you are very lucky it is confined to his lung.  This size is likely why your thoracic surgeon wants to remove the entire lung. The left lung has two lobes while the right has three.  The large tumor could also explain unproductive coughing and shortness of breath.  

I had my entire right lung removed with my squamous cell non small cell lung cancer tumor, a very large one that completely filled the main stem bronchus. There was no other choice but removal of the entire lung. I took the choice and that was 16 years ago and I'm still around.

If it were me, I wouldn't wait for a trial, especially if it involves 2 or 3 months of treatment that may not improve the situation.  Medical trials are uncertain. I'd move towards certainty.  Life with one lung is livable. I was very active outdoors before COVID. We went everywhere and did everything. Climbing the hill to reach Edinburgh Castle took some time but I eventually got to the top! I've not needed supplemental oxygen.

Questions? This is the place. Welcome here. We are not doctors but are nevertheless experts in all phases of lung cancer treatment--by experience!

Stay the course.

Tom

[SupportingTroy]

Thank you both.  This is what I need to hear.  Everything I have researched says go for the surgery first an then adjuvant treatment.  It has been 17 days since diagnosis and I can tell there has been changes in the tumor because his breathing has gotten worse.  Laying on his left side in the bed has previously kept the coughing at bay but its not working as well as it was.  He is at the hospital getting all types of pre op test today including VQ scan, PFT, Echo w/bubble, and MRI.  Tomorrow is the CAT scan (originally scheduled today but they had to change it).  Cardiologist appointment is on Wednesday.  Of course with COVID, I can't be with him and have to sit out in the car and "WAIT".

[Tom Galli]

I know, waiting is a major pain, especially with lung cancer. Read my book to pass the time. Follow the link on the bottom of my post page and you can read the first several chapters for free. It covers all my surgical experiences, chemo, scans and how I built my life after lung cancer. I also have a blog on this forum. It is titled "Stay the Course" and offers many prospectives and experiences with lung cancer. My wife was the hero during my treatment. She engaged and more than met all my needs but in order to do so, she needed to learn about the disease. She did so, way before we had the resources of Lung Cancer 101 at Lungevity.org. Her research and the questions she asked at my oncology consultation saved my life. She'd read that the FDA approved stereotactic body radiation therapy (or CyberKnife) for lung cancer patients and asked the doctor if this might be a treatment that would work on me. It did and it fried a tumor that resisted 18 chemo infusions.

Use the car time to become a subject matter expert on our disease. That is how you can best help him. 

Stay the course.

Tom