What next?

[twinsrusx2]

In April 2017 I was diagnosed with stage 1a non small cell lung cancer. I underwent a lobectomy of my upper right lobe. In July 2017 I ended up in intensive care with a massive PE. I just had a CT scan that showed "suspicious" enlarged lymph nodes located between my heart and my lungs, I underwent a PET scan. The PET scan lit up 3 lymph nodes ranging from 1-2 inches in size. I just had a bronchoscopy with a biopsy. I have not yet gotten the results but we all know what a lit up PET scan indicates. The doctor that performed the bronchoscopy stated that "in order to get to the involved lymph nodes he had to work around the trachea. Before I had the bronchoscopy my doctor talked about chemo and radiation. When I go back for my results I would like to know what questions I should ask as I am not knowledgeable about all this. I was reading on this forum about a gnomic study? Should I ask for this? What else should I ask? Any advice would be so appreciated.

[twinsrusx2]

I made a mistake. I was diagnosed in 2018.

[Jenniferroseolson]

When cancer spreads/grows, it’s a good time to re-do (or is this your first?) testing that looks at the genetic makeup of your exact kind of LSCLC as targeted therapies exist for some of the more common types. Mine was tested by Foundation One. Terms include “genomic” or “molecular” testing. LungCancerAlliance.com has a great fact sheet (molecular testing) as well as other useful info. Presumably the doctor took a biopsy sample when doing the bronchoscopy. Best wishes to you

[twinsrusx2 in reply to Jenniferroseolson]

Thank you Jennifer. It is correct to assume that this will be my first genetic testing. I think you are saying that I need to ask for testing that looks at the genetic make up of my exact type of cancer? Yes the bronchoscope included a biopsy. Thanks again.

[Denzie Moderator Volunteer]

mayoclinic.org/tests-proced...

[twinsrusx2 in reply to Denzie]

Denzie, are you suggesting that I should ask for radiofrequency ablation?

[Denzie Moderator Volunteer in reply to twinsrusx2]

I composed my answer in another page and did a poor job of checking after I thought I pasted it. Only the link transferred. Here’s my answer pasted again. I brought up radio frequency ablation because you mentioned it’s close to the heart. Sorry.

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Ask which mutations they’re looking at. It’s standard of practice now to check for EGFR, ALK, Ros1, KRAS and PDL1. Some cancer centers routinely test for more. Jennifer is right, they need to retest not rely on tissue from the first biopsy.

If they talk about radiation or state that it’s too dangerous ask if ablation would be an option. mayoclinic.org/tests-proced...

[Lovey1000 in reply to Denzie]

KRAS is that good to have, I found out today I have that one

[Denzie Moderator Volunteer in reply to Lovey1000]

Kras is the most common mutation. At this time there is no targeted therapy for it but it is being studied.

[Lovey1000 in reply to Denzie]

I got offered clinical trial for kras and when I go I’ll tell u all about it

[twinsrusx2 in reply to Denzie]

Thank you Denzie. 😁

[Denzie Moderator Volunteer in reply to twinsrusx2]

Have you seen the doctor yet?

[twinsrusx2 in reply to Denzie]

Not yet. I have an appointment with my oncologist this coming Tuesday.

[twinsrusx2 in reply to Denzie]

Thank you.

[katherineNED]

I had my upper left lobe removed 7/14 followed by 16 weeks of chemo. In April of 2016 a couple of lymph nodes tested positive for cancer. They were located near my aorta so surgery was out. Did chemo again and it didn't help so then the oncologist ordered 30 radiation treatments. The treatment ended the end of October 2016 and there has been no re-occurrence. The downside was that it damaged the vagas nerve and caused radiation pneumonitis however it did get rid of the cancer in the lymph nodes. I go for regular scans every 3- 6 months. I just had a scan a couple of weeks ago and it was NED. My oncologist let me know if there is a recurrence the next step would be immunotherapy. Keeping my fingers crossed I've seen the last of the cancer but good to know that here are more options everyday.

[twinsrusx2 in reply to katherineNED]

Thank you for sharing your story Katherine. It appears that our stories are similar except that I have not yet been treated. You give me lots of hope. What does NED mean?

[katherineNED in reply to twinsrusx2]

NED means no evidence of disease. Best of wishes!

[twinsrusx2 in reply to katherineNED]

Thank you!