Did anyone have a missed diagnosis of NSCLC?

Could you tell us when this happened? By law medical practices are now required to post all test results.
(In April 2021, as part of the 21st Century Cures Act (signed in Dec 2016 under Obama) new federal rules went into effect mandating that healthcare providers make nearly all test results and clinical notes immediately available to patients. It is important to read test results to see if something is not being addressed.
I have had frequent CT scans in the last two years. The radiologist report talks about anything it finds and makes suggestions on follow up. My Specialist who orders these scans only looks at his area of interest. I go over the full scan report with my Primary Care doctor and see relevant specialists if warranted.

This is extremely helpful as Brookwood Baptist in Birmingham AL sent a reply to my inquiry about what happened indicating that they believe I was given “appropriate care”. They did not respond to my question seeking clarification that their position is withholding the radiologist’s report and reco constitutes “appropriate care”.

Unfortuately, I don't think the law applies in my case. The report was available online - I just had no reason to look at it as I was treated for what might have been a heart attack having nothing to do with my lungs.

The Cures Act requires immediate electronic availability upon patient requests for all test results, medication lists, and clinical notes. The Cures Act does not require health care institutions to push unrequested designated electronic health information to patient portals.

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!

Just want to clarify that the hospital was in a different city and it was not Mayo that failed me, but the other Hospital. Mayo and their AWESOME Dr.’s saved my life!

The Urgent Care site I visited was in AL. I live in Chicago. Similar experience. Did the hospital that didn’t notify you take any responsibility for the stage you were in?

Make sure you are signed up for MyChart with an email address. I always get an email when any test result posts.

In an ideal world someone like the ER doc or radiologist would own cuing your primary that a test results is there that he/she should review. After I review it, I drop my primary a message asking if we should discuss.

You need to be as assertive as is necessary to be your own advocate.

This did not happen at my fabulous Northwestern Hospital in Chicago. I use MyChart quite often. I was visiting my daughter in Birmingham and an event unrelated to my lungs caused us to go to urgent care where they did an EKG and a chest xray. None of these results were included in my 10 pages of discharge papers. I was diagnosed with muscle strain. It was 4 months later when I was diagnosed with lung cancer that my daughter reminded me that I had a chest xray in Alabama. I was able to access it online - at the AL hospital portal - not MyChart - and saw that the radiologist noted a suspicious nodule - 1.4 cm - and recommended a follow up CT scan. The hospital never notified me or my doctor, whose contact information I had given them when I checked in. 4 months later in Chicago, the nodule was found to be 3.1 cm and was diagnosed as EGFR NSCLC.

Unbelievable. Well, you need all your attention on you at this point. Anger is a bad fuel for healing. And you can’t rewrite history. What I would do is send the medical director a letter stating that you are focused on healing and are only sharing your experience so a new control can be designed in his facility to prevent this clear gap in care coverage from impacting someone else.
Then make a healing tea and light
some great candles and focus on you.

Thanks for the good advice. I stopped being angry a long time ago. What’s frustrating is I had asked for an explanation of how it happened and reassurance that there were processes in place to ensure it did not happen to anyone else - with potentially disastrous consequences. Tea is made. I’m off to light my candle.