Adenocarcinoma - newly diagnosed

I had a robotic lobectomy; upper left lobe at the Mayo Clinic in Rochester, MN. I live in MN. Stage 1ac at the end of December 2022. Lymph nodes removed were negative for malignancy. Technically cancer free but will be watching it closely because I am still nervous. I was told at the Mayo Clinic that a lobectomy is the gold standard treatment for this stage. They also told me that my breathing capacity after surgery would be 80%. Recovery is a process and takes patience. Follow up CT in May.

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Thanks @kkckkjm. Geeze, sorry you had to go through that. I have just changed my health insurance which will cover chemo and radiation. I did have a maximum out of pocket copay of around $3600. I have $1241 left which I will have as a copay until it's met... Once that is met, it will take care of my chemo and radiation.

Sadly, we have to go through so much, and when health insurance becomes a nightmare it just adds to our stress.

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Hello, a comment about molecular testing. I had 2 lung surgeries, different lungs. Caris did molecular testing on first tumor. Went to Mayo for second tumor removal, their labs did molecular testing on that tumor. I also had blood analysis early in my cancer journey (Guardant). Results completely impacted the next steps/options for my treatment (Tagrisso). My advice – BE SURE YOU UNDERSTAND WHAT YOUR INSURANCE COVERAGE WILL PAY! Mine denied all claims. Rationale given included, "There is not enough evidence found in the medical literature to show that this testing is effective for managing your condition. The health plan does not cover tests that are not considered to be medically necessary for your care." The denial states the exclusion in my benefit plan (provided by a nationally recognized insurance company – thru my employer, but they are also huge as a Medicare provider) "…the fact that an Experimental or Investigational or Unproven Service, treatment, device or pharmacological regimen is the only available treatment for a particular condition will not result in Benefits if the procedure is considered to be Experimental or Investigational or Unproven in the treatment of that particular condition."

This is just a heads up. I had assumed the information garnered from the tumor analysis to be vital and a standard of care. I was wrong and paying the price for my ignorance!

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Hi @donnatownsend, It seems like things are moving ahead, and you are compiling a great list of questions for your appointment/s. Remember while you are reading info about biopsies, cancer, etc. There are always multiple opinions, and each and every patient is different.
This is just my experience, but my primary tumor was deep in my left lung, the biopsy of the lymph node was enough to determine the type of cancer. That meant they were able to stop at the lymph node, rather than going deeper and into the lung; IE. less risk.
Hopefully you get the call for the bloodwork soon, you may want to reach out to see what's causing the holdup. Lung cancer treatments are getting more and more specialized, so the more info your providers have, the better, in my opinion.

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Good morning. The surgeon called today to set up an appointment for consultation for the lymph node biopsy. I am supposed to get a call to do the blood work. But haven’t received it yet. I read about the procedure to do the biopsy yesterday and it said that you should not have it done if your cancer is inoperable. Which mind is because of the encasement of my bronchi. So i really want to know about that as well

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@donnatownsend, I’m glad to hear you are getting the molecular/biomarker tests. It should be standard of care, but still doesn’t always happen. If you are able to tolerate the symptoms that you are experiencing, it may be worth waiting for the results. If they identify a mutation the treatments can be significantly different than for other lung cancers.
My cancer is an adenocarcinoma, and is caused by the ALK mutation. If they gave up on the lymph node biopsy, did they do a liquid/blood biopsy for the molecular test?

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Thank you. They are wanting me to start chemotherapy/radiation and then if able immunotherapy. The Oncologist said that the tests would take 2 weeks to get back. But after thinking about it. I will move forward,, however I am going to wait on the molecular results. I just can’t see killing good cells? They gave up biopsy the lymph nodes that are showing up.

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Donna, you may find these 2 discussions helpful:
- Adenocarcinoma - newly diagnosed https://connect.mayoclinic.org/discussion/adenocarcinoma-newly-diagnosed/

- Adenocarcinoma Stage 3 newly diagnosed. Advice? Success stories? https://connect.mayoclinic.org/discussion/adenocarcinoma-stage-3-newly-diagnosed-advice-success-stories/

Do you have a treatment plan yet?

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Yes. I did. I have Adencarcinoma nscl I also found out today on my PET scan that I have two lymph nodes that showed up.

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