Question about type of surveillance scans after treatment begins

[Kim_F]

Hello everyone,

I am 51, newly diagnosed with Stage IV NSCLC, Adenocarcinoma with EGFR Exon 21. I have mets to liver, bone and lymph nodes. My diagnostic brain MRI was normal. I will hopefully start Tagrisso this week (the request is currently with insurance for authorization). My question is, how do we know if I develop brain mets in the future? My oncologist said he only does CT scans for surveillance, and a brain MRI would only be ordered if I had neurological symptoms. He doubted insurance would approve it as a purely surveillance measure. Waiting until I have neurological symptoms seems too late to me, and brain mets could be asymptomatic as well. Is this a standard approach? I also wonder how new bone mets would be detected with the CT-only approach.

Thank you for any insight!

[Tom Galli]

Kim,

So very sorry to learn of your diagnosis! Welcome here.

As I understand it, you had an MRI in the diagnostic phase. That conforms with diagnostic protocol as I understand it. Fortunately, Tagrisso passes the blood-brain barrier. So If anything settles in your brain during treatment, the medication ought to control it. Tagresso is very effective for adenocarcinoma EGFR Exon 21 disease, and I pray for your good results.

I had a brain scan during diagnosis to clear involvement before I started treatment. I had an MRI about 5 years after diagnosis and then another 5 years later. So in my treatment experience, MRIs were not used frequently as a screening method.

I think a CT scan is quite capable of detecting new bone mets. But, let's hope nothing new happens and Tagresso does its thing. Here is more information on imaging used in lung cancer detection and screening. 

Stay the course.

Tom

[Kim_F]

Thank you Tom! I would feel better checking every now and then if I have progression in the brain (to make sure Tagrisso is doing its job at prevention), but it seems this is not the norm unless you have neurological symptoms. 
I have seen various posts in the forums about folks getting PET scans as part of their regular every 3 month monitoring, so I wasn’t sure if I should be advocating for that or if CTs are sufficient. 
I am hopeful that I respond well as I start this next chapter. 

[LilyMir]

I actually understood that regular brain MRI is called for even for lower stages. I was stage 3 and had surgery first, then adjuvant chemo and now adjuvant Tagrisso and even with treatments being adjuvant I was told once a year brain MRI (Dana Farber info session). CT is good for torso surveillance but brain is best checked with MRI. Seems CT is sufficient for bone surveillance as I see comments on bone status in my reports and no one mentioned another form of imaging may be needed. Are yo able to get second opinion?

[Kim_F]

Yes, I am working on getting a second opinion appointment at MD Anderson, which is about a 3 hr drive from Austin where I live. MD Anderson wanted to wait until I’m finished with palliative radiation to my hip which I’m getting through my local cancer center, starting soon. 
 

[Tom Galli]

Kim,

MD Anderson is a solid cancer hospital. I'm sure you'll be well taken care of after precision radiation zaps that troubling bone met.

Stay the course.

Tom

[RJN]

Here in the UK, the NICE guidelines (which defines the standard of care) states CT as the main monitoring method. PETs and brain MRIs are only indicated if there are signs of change or progression. This is partially due to the cost and partially to limit radiation to the brain/body. PETs in particular are to be avoided on a regular basis due to the use of nuclear medicine.

[LilyMir]

Just a small comment that MRI uses non ionizing radiation, just radio waves, and is safe though the contrast they use is not something that is probably good to have often (gadolinium based). MRI is not good for lung surveillance sadly but excellent for brain and abdomen. PET has both radioactive material (glucose) and ionizing radiation (because they usually do PET-CT combo) so typically used sparingly or if people have contrast allergies. I don’t think PET is commonly used for surveillance as it tends to be lower resolution too.

[Karen_L]

Kim, 

I have had regular brain MRIs (every 6 months?)from the start. I developed a brain met which had NO neurologic symptoms. I was treated with gamma knife, and since then have been MRI-d every 2 months. With my last MRI, I graduated to every 3 months. I’d hazard a guess that your oncologist may be a generalist, i.e., not a lung cancer specialist?

My radiation oncologist went to bat for me with insurance for a more advanced method she preferred. Your doctor, or someone on their staff should do the same for you. 

It’s good you’re heading to MD Anderson.

Hang in. 
 

Karen

 

[Kamoto]

Brain MRI is in November.  That will be the 2nd one I’ve ever had.  I’ve had two total PET scans in the year since discovery.  They are 9000 a piece so I understand why I won’t have another until there are symptoms.  Stage IV lung with previous met to the brain