Did anyone have a missed diagnosis of NSCLC?

I know it's off the topic of this thread but can I ask how things have been since the segmentectomy. This looks like the road I will be going down soon. Any info about what to expect and any tips for preparing would be greatly appreciated. Funny thing is a mistake by my doctor may have saved my life. He kept ignoring the signs of a precancerous colon polyp I kept giving him. I eventually went to urgent care where they did a CT scan that caught the lung nodule. Had he just called for a colonoscopy they never would have caught the lung nodule. They later did a pet scan for the lung nodule that caught the large precancerous colon polyp. It's been a wild ride. 🙂

I also should direct you to the Lung Cancer group discussions. Many different experiences and information! Best for you to be on seeking information.

Hi there! I’m truly sorry you're on this road but very Happy you found this web group! What I did to prepare was to try to get my lungs and heart in better shape. I have 16 stairs to my bottom floor and I would try to jog up and down them 5 times once a day. I also tried to walk at least 2 miles a day (after a full time work day). I had already started eating better but lots of salmon and fruits and vegetables. I was already at a low weight so I wasn't worried about that. I wanted to breathe as much fresh air as I could get. I was inly 58 (now 59) so I may have faired better than others in their 70’s. But I had VATS on my LUL, and really only a couple of weeks before I could walk my mile without breathing difficulties and could walk up and down my stairs just fine. Pain was not too bad. I was given Robaxin, Lyrica, Hydromorphone and Gabapentin. Stopped the Hydromorphone a few days after getting home. Then the Gabapentine, after a week the Robaxin and after 3 weeks of slowly cutting dosage, I stopped the Lyrica. Only took 800mg Ibuprofen and 500mg Tylenol. Was working from home 2 weeks after surgery and back in the office 6 weeks after surgery. I bought an inside exercise bike around Thanksgiving and I ride it 30 minutes about 3 or more times a week and still walk about 1 1/2 to 3 miles, weather permitting. I’m just starting back at sit ups which I haven't done in about 19 years. No matter what, walking is the BEST thing you can do before AND after. But also realizing that everyone is physically different you don't want to push it afterward because that will set you back big time. Do what is comfortable but do something. I wish you all the best! Always willing to answer questions. There are no stupid questions! Also I bought pre-made meals to make it easy on my husband and I have an adjustable bed which made sleeping so much better and getting out of bed SO much Easier! That will be a painful area, so that is one thing you need to address before you go in, have a good bed or a wedge and lots of pillows. My nerve pain is pretty much gone. But I do not like having to wear a bra now! Sits right on top of the most tender area, but thats my worst complaint. The nerve area now just gets that tickle tingly feeling when its touched. Again, I know that was a long response but I hope it is helpful to you. Think positive!
Cindy

My segmentectomy removed 1/3 of the upper lobe of my right lung via Robotic Assisted Thoracic Surgery. I have 4 small incisions on my right side. Other than the typical post-surgery recovery - mild pain, tightness around the stitches and some rib pain - I’ve had no adverse effects and breathing is normal. Best of luck to you. Modern surgical techniques are remarkable. I also had a great thoracic surgeon at Northwestern in Chicago.

Thank you for the reply. Sounds like everything went great for you. So happy to hear that. I hope I have a similar outcome. I have a 2.6 cm nodule with ground glass around it in my lower right lobe. Pulmonologist thinks they will only need to remove part of the lobe.
Thank you for the reply. I love hearing success stories. I've been using doctor google too much.

My Dr told me to stay away from Dr Google, but to use sites like Mayo .org, Cleveland clinic . Org, Harvard, Mt Sinai etc. as long as it ends in Org and not COM. We all have done it and scared ourselves sick! Best answers will come from your actual doctors. If you don't agree with them ask for a second opinion. You have to be comfortable with what YOU decide to do. It is scary, but once you're done and healing you will feel better. Just remember to breathe and relax your mind. Great you are working out. You shouldn't loose anything you've gained, you will just have to take a small break for about a month or two but the walking will help! Good thoughts and prayers sending to you!
Cindy

Cleveland clinic is my favorite!!! So much great info. I also read a ton of research studies. When this was originally found in 2021 I thought I only had a couple years left based on what I was reading. Thankfully what I have is very slow growing and seems to have a very good prognosis if caught early enough. I've been doing power lifting. I know I'll lose at least a little progress but should be easy to regain once I recover. Thanks for your reply and kindness.

Can I ask what kind you have?

To be honest we aren't sure yet. We've been tracking it for over 2 years. It hasn't grown much. The assumption is slow growing Adenocarcinoma. Discovered it in July of 2021. 2.6 cm solid with ground glass opacity around it. There are also multiple satellite nodules one of which grew from 6mm to 7mm over the 2 years we've been tracking. The large nodule has not changed in size but the density has increased. The pulmonologist started out not being concerned thinking it may only be scarring from my acid reflux. The last visit he seemed rather concerned. He told me "your 2024 is going to suck". He also added "but once you get through this there is a 90% chance you'll be in the clear". Hope is right about the 90% thing. Just today I got the biopsy scheduled for March 7th. CT guided needle biopsy. We will see from there. Thank you for sharing your story. It seems rather similar to mine so far. Did you need to go through any chemo or other treatment?