I hate to question...but...I guess I will... - 1257193

Hi dkm,

I don't think you need to apologize for your grammar and spelling - your question is quite clear. And you certainly don't need to apologize for asking this question; it is a question many of us ask at some point during the course of this disease.

It is not standard to get periodic brain MRIs in the absence of symptoms, although some doctors prefer to do so.The reasoning is that brain mets will be just as treatable when they begin to cause symptoms as they would be if caught a little earlier especially if a patient is diligent in reporting symptoms. As Dr. Weiss put it:

"I typically acquire an MRI at diagnosis, then again if symptoms suggest. Some oncologist obtain more regular MRIs. I have no objection to this, but am not convinced that it improves actual patient outcomes compared to having a low threshold to get MRI once symptoms develop." - http://cancergrace.org/lung/topic/should-brain-mri-be-done-even-in-abse…

In that same thread, Dr. Aggarwal added: "I agree with Dr. Weiss. I obtain MRI brain if symptoms (headache, blurry vision, uncontrolled nausea, seizures etc.) develop, after getting a baseline scan."

Here is a more complete listing of symptoms (keeping in mind that each of them can have many other causes other than cancer):

The most common signs and symptoms are:

Headaches
Seizures
Weakness in the arms or legs
An unbalanced walk
Loss of balance
Memory loss
Speech disturbance

Other symptoms include:

Behavior and personality changes
Blurred vision/vision disturbance
Numbness
Hearing loss

- http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/b…

JimC
Forum moderator

Hi dmk, I guess no apology needed to ask questions in search of best way to deal with such a situation. I just want to share my experience with you. My wife was Stage 3B at dx. I insisted on surveillance scans (body PET and head MRI) against the convention. She was found to have multiple brain mets and suspected Leptomeningeal enhancement from routine MRI 6 months ago while she had no symptom. She underwent WBR immediately and has maintained symptom free to-date. I suspect that if she were to follow the standard protocol to only have scan upon the appearance of symptoms, she might not be able to maintain such a quality of life.
Disclaimer: There is no evidence that early detection or early intervention provide survival benefits in advanced cancer. Everyone's experience is different. This is just a personal experience from a personal choice, not in anyway to be construed as any disrespect to any doctor.

I think Jim (citing Dr. Weiss and Dr. Aggarwal) explained the prevailing standard well. If you typically have the same treatment options and outcomes whether you do surveillance scans on everyone or have a reasonably low threshold for chasing down relevant symptoms, you end up just doing the same but only needing to do a tiny percentage of the scans. Especially since it's not rare for surveillance scans to show irrelevant findings that lead to more of a workup for things that turn out to be nothing, the concern is that you're just extremely likely to waste a lot of money and subject lots of people to unnecessary scans for no net benefit.

I think individual cases don't necessarily need to be subjected to any prevailing view, and I think the threshold is arguably different if people want to pay out of pocket for their own scans. But there aren't enough resources to do everything out there that has a real value in helping people, so I think there's good reason to question the appropriateness of spending communal funds, whether from government programs or ever-rising insurance premiums, on pricey interventions that have no evidence of any value. And I think we should be very cautious about insisting on calling something a new mandate or standard of care when all we really know is that it adds costs.

-Dr. West