Chemo for pT1a? Also two independent (primary) cancers

I am back and I am worried that so is my cancer. FDGPET showed one hilar node SUVmax 3,9, CEA was 20 but somehow came down to 16. Could be unrelated, could be gastrointestinal problems, could be anything. There is possibility the node is entirely benign.

I have been advised to do bronchoscopy + biopsy and if malignancy, to surgery. Alternative is I go directly to surgery, intraoperatively check nodes for malignancy and if positive, proceed with open lobectomy.

Asked my surgeon that am I making the right decision and is this the best option? Answer: He would not advise me to do this and he would not be doing the surgery if he didn't think so.

Last time was VATS and recovery was easy. I am terrified that this will be completely different, unimaginably worse pain, for much longer duration and much longer recovery time. I have been trying to look for ways to manage pain. I hope there are means to do so.

Does anyone have experience with open lobectomy? Does anyone have experience with epidural for managing pain from open lobectomy?

@janar , This is understandably the hardest time in your life. All of the feelings that you are experiencing are valid, and ones that many of us have felt too. It's hard to imagine who would not have some form of PTSD after facing even one cancer diagnosis.
I was diagnosed with stage IV lung cancer at the age of 49. I was very sick, and was feeling like I wouldn't make it 3 months to my 50th birthday. My doctors identified the mutation that was causing my cancer, and I take a targeted therapy. I'm 54 now, and I know that my cancer will develop resistance to the medications and it will return someday. For me, the anxiety related to scans and dying has lessened over time. Knowing that there is a plan for when I have progression has helped me. Others, family and friends, try to be supportive, but it's difficult for them. They don't want to feed your fears, and they are trying to make you feel better. They really just don't know what to say.
Time has helped me. Just this year I started planning trips that are more in the future. You can too, just try to get trip insurance if that is offered where you are located. I try to focus on today, and not 10 years from now. Try to take care of yourself. I'm glad to hear that your wife will be back soon, and that your parents are close by.
Have you been able to be open with your oncologist or one of the oncology nurses? There may be someone on the team that can help to manage the psychological side of the diagnosis. It's a heavy weight to carry.

I still haven't mentally recovered from this all. Cancer is always in the back of my head and I can't plan anything long term. Come next winter I want to go snowboarding but even that feels so far away. Even when rationally thinking the lung nodule was pretty slowly growing (from 2mm to 6mm in 21 months). These days highlight of my day is the hike with my dog or running. Maybe its because its some sort of measure that at least I am still in good physical condition.

My wife is abroad at the moment but we will soon be together again. I wish I had heard about this nodule 3 months earlier so I could've dealt with it before the honeymoon. Now it was cut short. I want to have another, proper honeymoon without death looming over it.

Everyone who I talk to (doctors, my brother, parents..) are saying that we all die some day. It is annoying. Most people don't die when they're 30 or 40. Some do, and for most of those who do, death comes unannounced, by surprise. Certainly nobody my age is thinking of dying. My most preferred death is the kind which I don't see coming. I want to die standing, not lying in bed hooked to tubes and being in pain for weeks or months surrounded by more people who are also dying.

I am terrified of next scan. And while all doctors say not to worry about the CEA, I still do. Not as much as I used to but I still do. It is an indication of something, if not cancer, and I'd like to know what. Theres so many things I didn't ask from my doctor in the phonecall because I forgot.

Might have PTSD from this all but I must go through the scans because I would regret not doing so.

Me and my wife haven't really had the time to do things together. She said that my nodule was so small and that I'm overreacting. But at the same time she understands that I'm in this panic mode and can't enjoy things. Its lonely at home without her, I can't sleep alone anymore. I had to move to my parents house just to get proper sleep.

@janar, I'm glad that you are feeling good enough to run. Your body is still healing, so don't expect things to feel perfect. The balance in your gastrointestinal system can take some time to return to normal too. Many medications can wreak havoc on our systems. I know you've had a rough time, but these things that don't feel normal, aren't always the worst-case scenario. Be patient with your body, as it's still healing.
Are you and your new wife taking time to do things that you enjoyed prior to the lung cancer?

Doctor called and said that my CEA was "calm" after I said I don't want to know it. I did have the courage to ask if it was over 10 and she very confidently said no. She told me that there is healing process in my lungs and that all cells can shed CEA during inflammation or trauma.

I still have occasional pain on my wisdom tooth "pit" and the lymph nodes in my jaw keep getting bigger and smaller every day. Maybe I should see dentist.

I also have gastrointestinal issues and loose stool. Could be stress or could be infection.

I still do feel the segmentectomy in my lung. I also had pain on same side shoulder after breaking my running record.

Doctor said that she wouldnt stop running because of CEA. Its best I dont hyperfocus on it. It needs to be followed but imaging is more important.

I guess my CEA is in the 5.5-6.5 range based on the results from private lab, which reports 60% higher values than this one.

They are transferring me to another hospital because they agree that the lung cancer has nothing to do with my testicle.

I will ask for PETCT.

I have decided I don't want to know the results. I don't expect them to be good. If they're elevated, I can't do anything about it. And if they're not, well I'll like to believe that. Doctors will keep telling me that it is nonspecific regardless of the results.

I've also had some gastrointestinal problems, loose bowel movements. I also can't get proper sleep. I stay awake until 4 am every night and wake up at around 6 or 7 am. This has been going on for 2 weeks now.

At the same time I ran new record on my running route. And outside of the occasional pinch here and there and fatigue from not sleeping enough I am feeling physically well. I've noticed that I sometimes have small pinching pain in abdomen, especially when I haven't eaten anything. Maybe I have ulcers.

Or maybe it is in my colon, small intestine or liver or more in the lungs. Or its nowhere. Or maybe I have hepatitis or liver damage from all the meds from surgeries (VATS & wisdom tooth extraction) and vaccines. Or maybe I have fatty liver that doesn't show in CT. Or maybe it is elevated because I exercise too much and my lung hasn't healed properly yet. Whatever the CEA is, it won't tell anything until they can see it in the scans.

I'll just tell the doctor I want full battery of examinations: Gastroscopy, laryngoscopy, colonoscopy, full body PET and CT. And maybe enteroscopy or video capsule endoscopy.

BTW I also had another cancer (breast) 5 years ago. I too hoped my lung cancer was not a metastasis and indeed it turned out not to be. It was a new primary.

Let me know the blood test results.

I know so well that terror. Will be thinking of you and hoping your result is the same as mine.

I am going to have new blood test tomorrow. I am terrified. I am terrified that tomorrow is starting point for another nightmare. By tomorrow it has been over 4 weeks since my surgery.

I wouldn’t panic! Cancer markers do seem to be affected by inflammation and are not always indicative of cancer spreading. 2 weeks after my lobectomy, my CEA and my platelets were way out of the normal range, but a month later, everything was fine.