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Benign heart tumor? - Papillary Fibroelastoma vs. Lambl’s excrescence
Has anyone here been diagnosed with a rare heart tumor incidentally, or was the diagnosis changed to a Lambl’s excrescence?
My recent TEE report for MR and MVP had an interesting “oh, by the way” little nugget at the end: a small, mobile echodensity is hanging off my aortic valve (on the aorta side, characterized as either a benign heart tumor [a papillary fibroelastoma, or PFE] vs. a Lambl’s excrescence!)
The nurse who made the follow-up call to me did not even mention this fact, although from my research it seems that PFE’s are not benign in the sense that they are thromboembolic. Not only can they harbor tiny clots, but the fact that they are actively swinging with each movement of the valve, tiny pieces of the tumor itself can break off and cause downstream mayhem.
The cardiologist had read the report, and seems not to be at all concerned, as no further imaging has been scheduled for another year, nor was any antiplatelet regimen recommended.
I’ve scheduled an additional visit with the cardiologist, but feel let down that the doctor herself did not make the initial call to clarify the results or assure me as a patient. Grrrr.
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"Eternal vigilance is the price of...(enter your fave thing that you'd hate to have go south suddenly).'
😀
It's a good thing you're switched on.
Thank you, @gloaming, for your kind response!
And yes, “switched on” indeed….perhaps too much so! Desperately seeking the off button!!!! 🙃
And, sadly, most of the ol’ body parts are headed in a most unforgiving southerly direction.
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1 ReactionHi @thisnthat. I am tagging @acnacf and @gset have discussed Papillary Fibroelastoma. They may be able to shed more light about it and how it compares to Lambl’s excrescence.
Here is an article from 2019 affirming your experience stating most Lambl’s Excrescences (LEs) are found incidentally. It does also say asymptomatic patients with LE should be closely monitored with TEE follow-up. It goes further to discuss patients that have symptoms.
- NIH Lambl’s Excrescences: Current Diagnosis and Management
https://pmc.ncbi.nlm.nih.gov/articles/PMC6681848/
You mention testing for mitral valve prolapse (MVP) and mitral regurgitation (MR). Are you dealing with this or is it something your doctor is trying to diagnose?
Thanks so much, Janell! I appreciate any info on the subject as it’s not widely discussed. My cardiologist is willing to schedule me for an MRI to determine if this is truly a PFE or simply an atypical LE. I think waiting for a patient to become “symptomatic” really means, “Let’s see if they have a stroke before we implement an intervention!” Kinda like closing the barn after the horse has already fled.
Yes, I am being followed for MR & MVP.