I preface this with the fact that this is a fairly rare cancer and not many live long enough to do trials and whatnot, so I am asking for advice, none of which I expect to be legally binding for either myself or any other reader. :)
I am currently diagnosed with stage IV recurrent & metastatic ACC despite having clear margins following surgery in April 2013. Masses found in both lungs, liver, gastro-esophageal junction and several lymph nodes near the pancreas. Also noted is a mass in the left psoas muscle.
Infusion chemo of doxirubicin and etopiside (forgive misspellings) but no cisplatin due to low eGFR since I have only one kidney. Neulasta shots are given at the end of each cycle. I just completed my 3rd round with 3 more planned at this point. Genetic testing indicated a mutant gene p1 something or other in about 4% of the cells so chemo that targets the mutant genes not being considered at this point.
The most recent scan done this week shows growth in only 2 apparent masses: one in the left psoas muscle and another in the bottom of the right lung. The lung mass in question was stable at 4mm from 2004 through Feb of this year at which time the CT showed it at approx 7mm. This week it was measured at 11mm. I don't have the report handy to give measurements of the psoas muscle mass changes.
I am not convinced that all the masses or whatever are ACC. If some respond to the chemo, I would think all would respond. JMHO Also, the most recent CT shows continued "spinal changes" without anything to indicate to the radiologist as to why the changes. It also reported mottled marrow in the spine.
Q1: What does the mottled marrow mean exactly? Is it just from chemo or is it likely more serious?
Q2: Am I an idiot for thinking that a biopsy of the thing in the bottom of the lung and/or the left psoas muscle needs to be done to confirm they are ACC after all?
I would appreciate your insight. Google didn't help much. :)
Reply # - July 10, 2014, 09:15 PM
Reply To: More Questions abt dealing with adrenocortical
"Mottled marrow" is just non-specific -- it doesn't signify anything in itself. The marrow could easily look this way from the Neulassta or possibly the chemo. The best person to answer this is the radiologist or your doctor.
If just about everything that is convincing for cancer shrank and just two spots grew, this is called a mixed response, and we generally focus on which direction things are moving in overall. In other words, a couple of areas of slight progression don't veto the good effect of most of the lesions shrinking. On the other hand, if we saw 80% of the cancer lesions growing, it's cold comfort that 20% of the lesions shrank.
If you already know that the cancer is metastatic, the only reason to do a biopsy of another lesion is if it will change management. In other words, if the idea is that most of the cancer has responded so you're going to continue on the same treatment, there isn't a clear value in obsessing over just of the many metastatic lesions. Whether it is or isn't actually the same process, the big picture should focus on the overall direction of the cancer, not focus exclusively on the behavior of one or two lesions, particularly if there aren't many other good treatment options to pursue as alternatives.
It doesn't matter if every lesion is ACC. It only matters if the lesions being used to make the big decisions are ACC.
Good luck.
-Dr. West