New to adenocarcinoma lung cancer and have LOTS of questions

I had my 6mm nodule removed 2 weeks ago. I first heard and became aware of its existence 2 months ago and I got very real-like feelings almost immediately after hearing it: whole chest on fire for about a week and I started feeling this pain that felt like glass shards about the area where my nodule was located. Here's the twist: I have had this nodule in my lung for two years, albeit it was 2-3mm in size 2 years ago. And I never felt any chest pain.

First my oncologists told me that nodule of this size cannot cause physical symptoms yet, as lungs dont have many nerves to begin with which would make you even feel the pain. But despite this I continued to feel this pain in the chest. Running and exercising would take the pain away for two days but it would come back. Then I talked to another oncologist who told me that human mind can very easily create sensations that arent real. He also said that the nodule couldnt be the cause.

I later noticed that eating would take the pain away too.

After the surgery, I told the surgeon about these feelings, who is incredibly experienced and respected, told me that there is no way it couldve caused me any pain.

I didnt feel pain after the surgery. Well until I started palpating my neck for lymph nodes. It actually aggravated my right shoulder, causing pain on right shoulder, which is incredibly common pain for everyone. But then I also read about "referred pain" and pancoast tumor. Well I dont have pancoast tumor (knock on wood) and if there is any referred pain its most likely caused by the surgery I had only two weeks ago.

Despite this I started writing "pain diary" on my phone. Not only did I write my sensations in detail, I also wrote what I did during the day. After about two weeks after my surgery was done and after I had been keeping diary for 5 days, I noticed a correlation between the pain and my daily activities: long walks were heavly correlating with the intensity of my pain and any exercise would probably aggravate my postoperative lung to the point that my shoulder hurt. Also during the surgery my arm was bent over my head. I remember this because I woke in the surgery room with tubes down my throat and arm bent over like that; its abnormal pose. Only then I started thinking that this is most likely just overuse of my shoulder: walking, surgery, constant neck palpation, carrying, cleaning, raising elbow over shoulder level...

So after this I rested my shoulder for two days, with minimal movement, and I've noticed improvement. Also no more +5km hikes for at least another week or two. Letting my lung heal now.

If youre still reading this, I just want you to know that: Your symptoms can be trick of your mind, especially if they just so happen to appear after hearing something devastating. Constant worrying, hyperawareness and playing Dr. Google can really get your mind going.

Your symptoms can also be real but you have to try to be rational about them. It took me 2 months to become more rational about mine so I can't say its easy.

If you have feelings that concern you, you need to talk to your doctors. And try to figure out if there are things that make you feel more or less pain.

Hi @annallee, I'm just checking in to see how you are doing. How extensive was your surgery? Is your recovery going as well as expected?

Hello Janar. Thank you for the information. I will have an upper left lobectomy with a robotic assisted thoracoscopic method.

How long was it before you could take walks again please and that sounds like your recommendation but it causes pain?

I walk everyday for 1 to 2 miles and I am hopeful I will resume that with my dogs.
Thanks you.

Hi! I had an ULL on October 2022 for NSCLC and have had a full recovery. I attribute it to walking a lot after my first post-op visit about 10 days after surgery. I walked for 15 minutes, four times a day; 10am, 1pm, 4pm, and 7pm. It was slow going at first but I was able to increase duration and speed fairly quickly. If not for the tiny scars from the robotic arms, I’d never know that I had surgery. Good luck and keep walking!

I received VATS minimally invasive segmentectomy so it wasn't as major as lobectomy. Even my hospital stay was less than 1 day (approx. 20 hours from surgery).

I started walking as soon as I could. I very carefully got up from my bed and walked to the bathroom the next morning. The pain wasn't excessive but it wasn't pleasure either. I started feeling better quite fast and the afternoon after walking to the X-ray and having pictures taken I was released and walked unassisted to my brothers car waiting outside. I think I spent that and next day taking it super easy, mostly just lying in bed and not trying to hurt myself. But on the third day after hospital I already walked 3km (1.86 miles). On the fourth day I was feeling great and walked a lot more: 7,8km (4.6 miles). On fifth day I walked 4km, sixth day I was again feeling great and went spontaneously for a 12km hike in the hilly woods. While climbing the hills at some point I started getting really out of breath and got pain in my chest so I stopped, rested for a while and turned back. On 7th day 4km and on 8th day I started getting shoulder pain on the same side as my surgery. I didn't at the time attribute it to the walking after surgery because walking made me actually feel good. I rested couple days and then walked again and I got shoulder pains once again. Interestingly the shoulder pains went away when I walked so I thought I should keep doing that, but the shoulder pains actually got a lot worse in the evenings and when going to sleep. It took me trial and error to stop going for walks. After resting 3-4 days and not exerting my lungs or shoulder I started taking walks again and started feeling great again.

If you develop this shoulder pain, it's most likely due to the irritation to the pleura. Of course you should talk to your medical professionals about it. If it happens to you, my personal advice is: When sleeping, try not to lie on your back and instead try to lie on the opposite side from your surgery. This helps rest your shoulder and entire arm against the side of your body. Also for couple days try to move the arm as little as possible. Don't reach high (above your waist) with the painful side. Essentially avoid any kind of motion that makes your shoulder move. Rest for couple days and it will get better. Don't try to do stretches or exercises even if it makes the pain go away. It came back for me and it was worse than before. It's best that you let it rest.

Now it's been 28 days since my surgery and I went on my first run after it. Time will tell if I start feeling pain again but so far so good. Every now and then I still feel a pinch or discomfort. It certainly isn't what it used to be but all things considered pretty good.

Oh it sounds like you have done so well. I will wait for the two week out of surgery post op visit, too I understand. That was great discipline to do it four times a day. Will let you and others know in a few weeks how it goes. I do hope the robotic works for me as well. Thanks for sharing.

I'm hearing pretty clear to listen to my body and not expect too much after surgery and to walk but not over do it. Yes, I know the feeling after a walk making me feel great until later and then I am scratching my head on how I set something off. Looks like you kept a diary of your physical progress to figure patterns out. I'm going to do the same thing and then talk with the surgeon if I have shoulder issues. When I had a mastectomy on one side only, that arm took a long time to raise comfortably reaching for a cup in a cabinet. This surgery will be on the left side under the mastectomy area so I hope my arm doesn't blow up with swelling after being insulted again. I never got lymphedema except a tiny bit. I always sleep with that arm raised on a pillow above my heart. I have a friend who had surgery four years ago with the open method that was a rough so she slept upright in a Lazy Boy for four months until she could lie down again. I suspect I will be sleeping upright in the hospital and on my Lazy Boy initially. I'm a stomach sleeper but I suspect that will go out the window so I don't compress my lungs. Trial and error. Thank you for highlighting some of the issues. I should be able to push through it. And knowing I am not alone does help on this website.

I didn't really have trouble raising my arm. It was more that the more I moved around in the first days the more pain I would have in my shoulder later, in particular when I went to sleep in the evening. And my pain would go away during exercise but it would then come back pretty strong later. In that sense it is pretty insidious as you might not attribute it to your exercise at first. But it will go away with rest.

You can do it! Rooting for you!

Hi Lisa! @lls8000
The surgeon was able to remove the two spots, however, found the cancer had moved into my lymph nodes. It has been just over 4 weeks since surgery, I have come a long way, but have further to go! I guess that I am expecting more of myself than anyone else is. I am frustrated to still be on oxygen and running out of breath with certain movement - or because of the stifling recent weather . I returned to work (I work from home, at a desk) which is very helpful as it keeps my mind off other things. I will start chemo after Labor Day, then immunology - to what extent will be determined after the MRI of my brain. The oncologist wants to make sure things have not spread to my brain yet. Thank you for asking.

Hi @annallee, how is chemo going?