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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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@thisnthat
Here is some information from Mayo Clinic:
- Mayo Clinic Q and A: Understanding and treating fibroelastomas
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-understanding-and-treating-fibroelastomas/
The expertise in the article was provided by a Mayo Clinic Cardiologist you may find helpful:
- Kyle W. Klarich, M.D.
https://www.mayoclinic.org/biographies/klarich-kyle-w-m-d/bio-20053646
You can contact Mayo Clinic to learn more or pursue an appointment using this link: http://mayocl.in/1mtmR63
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2 ReactionsFrom my understanding there is no genetic component. Considered “rare”. It’s thought that at some point there may have been an injury to the heart. Sometimes found at autopsy or after someone has a stroke and they are trying to figure out the cause. And sometimes like mine, found while evaluating for something else.
It’s a difficult recovery but glad it’s out. I will be 6 weeks this coming Tuesday and doing rehab. Looking forward to 3 month mark!
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2 Reactions@jlharsh, that was really helpful for someone like me, without a definitive roadmap for treatment! I was the one who had earlier suggested to my cardiologist that maybe I should be on baby aspirin, so this validates that line of thinking. Many thanks for the links!
@mamadorbauman
It must be hard for you, being used to an active lifestyle. It’s been a little over a month for you since the surgery, so guess you have a bit of a ways to go—but sounds like you are on the mend! ☀️ Thank goodness the scary part is behind you now.
Guess you’re right about no genetic component. However, AI did mention (for what it’s worth) that having an autoimmune disease or inflammatory process could predispose you to endothelial injury and possibly increase the odds of a PFE. That may be true in my case, if it proves to be a PFE.