Well, this is confusing

[Scruboak]

Can’t sleep so here I am wondering.  I was able to get my CT scan two days ago and saw my thoracic surgeon today.  The pathologist identified a nodule, said it hadn’t grown but both me and my physician realized that he measured the wrong nodule! So, it now appears I have two nodules in about a 2 cm area. The original nodule has appeared to grow larger. Thoracic surgeon is supposed to talk with the pathologist and get back to me. I also asked if it was possible to use the original tumor nodule to obtain bio markers and possible mutation drivers (that didn’t happen the first go round because I was told that stage IA2 didn’t qualify for the testing).  Invasive mucinous adenocarcinomas carry a high rate of K-ras D and V mutations and I’d just like to know.  Surgeon stated it could be done technically but didn’t know if insurance would cover it. Oh, just thanks for the midnight ramble.  I’ll lay here and do my breathing exercises. Love to all, Suzan

[LouT]

Suzan,

Wow...of course a result like this is concerning...in my case I always look to my oncologist for the final word on my scans so I'm glad that your surgeon took a better look at them than the pathologist may have.  Getting the biomarker testing is a good idea.  Like you I was originally diagnosed as Stage 1a so that testing wasn't available to me (and I wasn't well-versed enough to insist on it).  Please keep us updated on the next steps and findings and don't let your mind "get ahead of facts" as I so often had done.  That just results in a lot of anxiety and fear.  Stay strong and you'll get through this.  

Lou

[Rower Michelle]

Wise advise- to see if you can get the biomarker testing done... in a lot of cases, the organization doing the testing will either give a steep self pay discount or eat the cost of the test entirely.  My insurance company denied comprehensive biomarker testing (for stage IV!!).   It was a stressful time but in the end I didn't pay a dime.  Each of the companies that do biomarker testing has a consumer advocate to help with this situation.  

The reason the insurance denied the comprehensive testing is that I had a "Limited Panel" which showed had no targets.   The comprehensive testing was more refined and did find an ALK mutation.  So in my case it was life saving.  To this day I'm still baffled by the denial. 

In the end, it's the oncologist who has the final say.  I'm beginning to lose track of how many times the radiologist didn't have it quite right.   

[Tom Galli]

Susan,

Late night contemplation found you? There is something about sleep deprivation and lung cancer. We seem to be affected by it.

Now two nodules? I agree and suggest a full court press for biomarker testing. Systemic treatment may be required or perhaps not. What are the chances the surgeon can remove those two nodules? If you get a hard no on biomarker testing, another suggestion--how about a consultation with a radiation oncologist to see if zapping those nodules with precision radiation is possible. Precision radiation would eliminate the possibility of biomarker testing but it would also eliminate the nodules.

But do try and put this out of your mind in the evening so you can rest.

Stay the course.

Tom

[Scruboak]

Will do, Tom. I’m reading Detectve Gamache novels. It’s weird that I just feel so - ashamed - somehow. 

[Karen_L]

Good choice in reading, Suzan. There's something comforting in Gamche's goodness. 

Keep advocating for that biopsy-- such good thinking to ask if the original sample could be tested. Even a liquid biopsy would be a positive step. And your surgeon or someone in their office should go to bat for you with the insurance company!

It's weird to shift from being a passive "good" patient to an assertive person firmly engaged in your own care. That shift itself would keep me up, let alone a patch that's sent up a new nodule. Waiting is really hard. Deciding to take action is really hard, and taking action...well, that usually sends me under my bed in fear. Unfortunately, we seem to need to be able to do them all, simultaneously. (And, sadly, not from under the bed.)You matter and you deserve good care.  You can do this. We're with you!

 

 

[Scruboak]

59 minutes ago, Karen_L said:

Good choice in reading, Suzan. There's something comforting in Gamche's goodness. 

Keep advocating for that biopsy-- such good thinking to ask if the original sample could be tested. Even a liquid biopsy would be a positive step. And your surgeon or someone in their office should go to bat for you with the insurance company!

It's weird to shift from being a passive "good" patient to an assertive person firmly engaged in your own care. That shift itself would keep me up, let alone a patch that's sent up a new nodule. Waiting is really hard. Deciding to take action is really hard, and taking action...well, that usually sends me under my bed in fear. Unfortunately, we seem to need to be able to do them all, simultaneously. (And, sadly, not from under the bed.)You matter and you deserve good care.  You can do this. We're with you!

 

 

“Noli timere” Be not afraid. Det. Gamache