Ask Two Doctors, Get Four Opinions

My appointments were....interesting. I feel like I got 4 opinions from 2 doctors.  The first appointment was with a medical oncologist. He took the time to show me the scans (which I hadn't seen yet) and calmed me down a bit. Apparently, the radiologist said in the report that there are 4 spots, but he only marked 3 with arrows?  Neither doc could find the mysterious spot #4.  The three we could find are spread out all over my lungs, with the biggest being very close to my heart.  The other 2 are on either lung.  (one high and one low, but I don't remember which is which.)  All three, both docs emphasized are VERY small.  They agree that needle biopsy is not an option at this point.  Since ACC tends to be indolent, if they are cancer, doing nothing is a valid option. - There just aren't good systemic treatments.  Then they start to differ in their opinions.


Doc #1  - (medical oncologist) - they may or may not be mets. Western PA residents get lung nodules at higher rates than other areas. They could be scar tissue. The fact that they grew from the last scan could just be an artifact of the scan technology. even IF (and it's a big if) they are mets, I've got lots of time to decide what to do, since ACC is such a slow grower. Wait three months, get another chest CT - NOT a PET-CT

Doc #2 - (radiation oncologist) - opinion #1 - they are mets. but, ACC is indolent - it doesn't grow quickly. Standard of care is do nothing until they  get bigger or start to cause problems.  Wait 3 months, get another PET-CT

Doc #2 - (rad onc again) - opinion #1b - they are probably mets, but we can do a wedge biopsy to confirm. (At this point, I DON'T like this option, neither did he, he just brought it up as an option)

Doc #2 - (rad onc again) - opinion #2 - they are mets. cyber knife 'em. He is heading a clinical trial where if there are isolated mets, they treat them with radiation surgery (not sure of the exact kind - they are mailing me info since the research coordinator had left for the day) to see if this allows your body's immune system to better deal with the micro-tumors that are present.  This would entail 3 treatments (not sure if it's three per spot, or just three) with minimal short term side effects  - fatigue, possible burns, possible dependence on O2 (very unlikely given my age and other risk factors), possible sore ribs for a month or more.  Long term side-effects are more concerning, given my age.   This would probably still be an option in 3 months, after another scan - if I still have fewer than 5 nodules - a requirement for the study.

I'm not sure what I'm going to do, besides looking into it more, find out more about the study, side effects, etc.

The good news is that they all agreed that this should currently (and if I should choose to have it after the radio surgery) should have no effect on my ability to use APR or SCBA - so I am BACK on the the clan lab team ( yay!)

Oh, and I was VERY impressed with both docs, but especially the rad onc. He even gave me his cell # if I have questions later.   I do already, but I figure docs get weekends, too. I'll give him a call on monday, and make double sure they are sending me the info.