Did anyone have a missed diagnosis of NSCLC?

I think if there was an incidental finding that required follow up tests recommended by a radiologist, Mayo would let you know. Especially if the finding was unrelated to what you were being treated for. What do you do if you’re treated/tested when you are in another city?

Whenever I need to have a test done outside of my own doctors (Mayo and my primary) I ask them to fax over results (actual scan also) so that the exams are in the same database location. It can be easier if you request at the time you are being seen there because otherwise when you call back to get it done, they may ask you to fill out permission forms etc., which is more work. Good idea to travel with the fax numbers of your doctors too.
In the past I have noticed that scans done at my doctor's will say "nothing to compare to", so good to have any previous ones in their database so they can see changes.
Big challenge to get all the medical information in one place. Sometimes they can look at another institution's records, but it depends. We can only hope for that day in the future where all our medical records will automatically be stored in one place.

Whenever I need to have a test done outside of my own doctors (Mayo and my primary) I ask them to fax over results (actual scan also) so that the exams are in the same database location. It can be easier if you request at the time you are being seen there because otherwise when you call back to get it done, they may ask you to fill out permission forms etc., which is more work. Good idea to travel with the fax numbers of your doctors too.
In the past I have noticed that scans done at my doctor's will say "nothing to compare to", so good to have any previous ones in their database so they can see changes.
Big challenge to get all the medical information in one place. Sometimes they can look at another institution's records, but it depends. We can only hope for that day in the future where all our medical records will automatically be stored in one place.

Yes! I’m trying to narrow all of my appointments with doctors to those that have access to and can submit to Epic, Mayo’s patient portal.

All my docs are at NW Medicine in Chicago, including all specialists, surgeons, etc. Portal works like a dream. We need laws governing medical records so there is a national database which has all your medical records in one place. People move, travel, go to different hospitals so we need to insure docs have acess to all records, not just the ones at one healthcare facility.

Wow! I thought that only happened in the city I used to live in! May 2014 I had a small car accident and they took me to the hospital and ran every test you can imagine. (Other person’s insurance). Anyway, same thing… CT reported a suspicious nodule suspicious for adenocarcinoma.I had on the paperwork to send everything to my Dr. I don’t recall when I actually saw that report for the first time, maybe 2018 or 2019, but I didn’t know what it meant and no one ever said anything to me, so I forgot about it. December of 2023 regular visit to set up my new Dr. new town. He wants me to go have a lung screening because of past smoking history. Next day I go and long story short, nodule had grown from 8mm to 21, and positive for adenocarcinoma.I’m very lucky that it was slow growing! Segmentectomy in March of 2023, at Mayo in Phoenix. They now have in my records that because of missed follow up by hospital staff that I was one who fell through the cracks. I know that I am lucky and I’m glad my new Dr is right on the ball with me! Hope maybe others see this and stay on top of their medical records! It may save their life!

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. 🙂

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