Some resolution

[Scruboak]

My last two Ct scans were confusing as the second radiologist identified a new nodule and didn’t comment on the one that was there six months before. My thoracic surgeon was puzzled, talked to the second radiologist and they agree that it’s likely there is some “mucus plugging” in both bronchi. (Which kind of concerns me because I have invasive mucinous adenocarcinoma - but what do I know😂) The first nodule has changed shape and is just a bit larger but still very small 5x4.  I was to move to annual scans 6 months ago but will stay on six month scans until this resolves. The really exciting news is that I’m getting some biomarker testing done - may have to pay out of pocket but CU Health will run it by insurance anyway. The director of the program has been in contact with me and says that she can do a panel to see if KRAS is present. If it is ( and IMA of the lung has a high KRAS rate) then she will stop there. If not KRAS, they will continue with full panel.  It feels good to be an advocate for myself - the “e” word, ya know, empowering.

[Tom Galli]

Scruboak,

Well done with your biomarker negotiation. Ideally, insurance companies should embrace new care or diagnostic methods, but not often. We need to push, sometimes not gently. I’ve found embarrassment works. Try a social media zinger. 

I remember a time trying to get my insurance to cover my life-saving precision radiation treatment. The medical codes for the procedure were still classified as experimental despite FDA approval. My treatment was a two-part process. A thoracic surgeon implanted 1mm gold “fiducals” serving as targets for the radiation device, then I had the radiation. This mixture of procedures and codes was uncommon and while most codes shed the experimental tag, the fiduciary insertion didn’t. I wrote a check to pay the doctor myself. I found out years later the reason. 3-D modeling and software did away with the need to implant fiducals. Insurance is the bane of our disease.

While we suffer insurance battles, we are lucky compared to international survivors who have to fight bureaucrats to get their national health service to embrace new state-of-art methods. I’d rather fight a company than a country.

Well done empowered!

Stay the course.

Tom

[Scruboak]

Thanks, Tom. Good thing we don’t have a eugenics policy, too. We’d all be goners. I will be very surprised if my insurance approves this. Suzan

[LouT]

Prayers for you that they do approve it.  Doctors need all the information they can get to help treat those of us with this disease and you deserve it as well.

Lou

[Karen_L]

Go, you! Excellent work on that biomarker testing. 

A six-month wait on a nodule that has shown signs of growing? Hmmm. That feels a little long to me.... Is there an option for yet another opinion? Or even a repeat scan in 2 months rather than 6? I guess this means *you* would get to do more legwork (oh, yippee, right?) but waiting around until something happens *TO* you seems like medicine that's  more convenient to the docs than to your well-being. 

[Justin1970]

Hi suzan 

Goodluck with everything I really hope you get a good result from the biomarker test all the best Take care Justin x 

[Scruboak]

12 hours ago, Karen_L said:

Go, you! Excellent work on that biomarker testing. 

A six-month wait on a nodule that has shown signs of growing? Hmmm. That feels a little long to me.... Is there an option for yet another opinion? Or even a repeat scan in 2 months rather than 6? I guess this means *you* would get to do more legwork (oh, yippee, right?) but waiting around until something happens *TO* you seems like medicine that's  more convenient to the docs than to your well-being. 

Right?! Except, the second radiologist never went back to measure the first nodule - I did with the electronic calipers on the Ct images. And, I’m not a radiologist. I’ll go with the biomarker testing but when I hounded the thoracic surgeon she had her med assistant write back “discussed your previous message and questions/concerns with Dr. Erickson. She did confirm that these were two separate areas of mucus plugging, not new nodules. Nothing to be concerned about.”  I’m going for a hike to distract - it’s harder for me to accept without questioning because It took a long time for the docs to go ahead with the VATS surgery when the initial tumor showed up incidentally on a Ct for a kidney stone. They kept characterizing it as “atelectasis”. It was during the COVID crisis and was considered to be an “elective surgery”. I’ve looked at “ mucus plugging on CT” and these areas on my scans don’t really look like anything that is pictured online. But, I’m not a radiologist😂

[Karen_L]

1 hour ago, Scruboak said:

But, I’m not a radiologist😂

No, you're just someone who wants to live. Maybe it's just me, but I'm pretty much not impressed with how casual your lung cancer folks are about your concerns. If you think it might be helpful, I can DM you my radiologist's contact info. Maybe she can do a tele-consult about your scans? She's a PhD MD & has an endowed research chair at the cancer center where I get my care. I think she's amazing-- I would like to be her when I grow up. 

[Scruboak]

Karen, thank you. Please do that direct message. I’ll follow up. Again, thanks!

[Justin1970]

Hi

I think Karen is right I wouldn't leave it for 6 months and I would definitely get another opinion, I hope you get some good answers

All the best Take care Justin x