My mom (71) was diagnosed with Leptomeningeal carcinomatosis about 2 weeks ago. She has no symptoms; the diagnosis was made from a rountine brain MRI, showing new areas of "leptomeningeal enhancement" including "on the surface of the superior cerebellum and the occipital lobes bilaterally....and temporal lobes." Prior treated mets (SRS) unchanged. The spinal MRI was clear. No lumbar punctures were done.
Could the areas of "leptomeningeal enhancement" on the MRI be something else? I saw your posts under "Is Pulsed Tarceva Still an Option" indicating that "leptomeningeal enhancement" does not necessarily mean carcinomatosis, and feel sick to be doing WBR if it is not LM. . We were told without treatment, she could have only weeks to months, so she started WBR right away and has done 3 of 10 tx. Our dr did not want to do Pulsed Tarceva .
I read that Posterior Reversible Encephalopathy Syndrome can present like LM on an MRI, and can be caused by chemotherapy,. I found one asymptomatic case... Could having the MRI done during chemo affect the results? Could this "enhancement" just resolve? It feels we don't have time to wait and see in case it is LM.
Thank you for your help. Your website is invaluable..
PS - A bit of background: Original dx: NSCLC adeno 2008 (surgery & chemo). Mets in 2010. EGFR + . Two years on Iressa until progression last fall.. Has been on ciplatin/gemcitabine & carbo/gem for 6 rounds. Feels good. Very active. No headaches, etc. Just a little tired from chemo.
Reply # - April 8, 2013, 02:06 PM
Reply To: Maybe it is not Leptomeningeal Carcinomatosis?
Hi lori2010, I'm so sorry you mom and you are going through this. How absolutely frightening it must be. Have you read these 2 blog posts? http://cancergrace.org/lung/tag/leptomeningeal-carcinomatosis/
They discuss pretty much what is understood and so unfortunately what isn't known about this complication.
I understand that these MRI enhancements have resolved themselves hence were not lepto (LC). However since you just read everything I understand on the subject of MRI's suggesting LC I'll ask a doctor to comment.
I hope this isn't LC and your mom continues to do well.
Janine
Reply # - April 8, 2013, 08:43 PM
Reply To: Maybe it is not Leptomeningeal Carcinomatosis?
Leptomeningeal carcinomatosis (LMC) is discussed all over the discussion boards here, and one conclusion the faculty feel is important is that it is extremely hard to diagnose, sometimes with a clinical picture that strongly suggests LMC but imaging and/or a lumbar puncture negative for cancer cells, and other times imaging being called suspicious for LMC in someone asymptomatic. Because it can be so very difficult to conclusively diagnose LMC even in someone with a picture very consistent with it, the only thing we can say is that anything is possible. Most of the medical oncologists on the faculty don't take a reading of an MRI like your mothers as proof of LMC -- sometimes the course follows what you'd expect for LMC with more time, but definitely not always.
-Dr. West
Reply # - April 8, 2013, 09:58 PM
Reply To: Maybe it is not Leptomeningeal Carcinomatosis?
Thank you, Dr. West, for your prompt reply, and to Janine for your quick post, too.
This diagnosis is very scary and stressful, and getting such timely feedback is much appreciated.
I am grateful to everyone at cancergrace for sharing their experience & expertise.