Benign heart tumor? - Papillary Fibroelastoma vs. Lambl’s excrescence

"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.

Hi @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.

@jlharsh thank you very much for the article. I have had two TOE procedures to confirm mine is a fibroelastoma and one CT, so they are confident. Been on aspirin and DOAC’s but DOAC’s appear to cause severe headaches overnight that last 3-60 hours.

Hi, @gset,

That’s interesting that your providers were able to determine it was a PFE from the TOE’s and a CT. My cardiologist is offering an MRI with contrast, which is something I would like to avoid due to the gadolineum.

If you don’t mind sharing, did you have any symptoms before diagnosis? Do you know the size of your PFE? There seems to be no hard line consensus on how to treat these things. From my limited research, it looks like tumor size, mobility, location and number of tumors are not correlated with stroke risk. So a tiny 2mm PFE could prove as lethal as one 20mm in length? 😱
Other published research stresses tumor size and mobility as key markers for thromboembolic risk. Some docs take a watch-and-wait attitude. Some prescribe baby aspirin and/or an anticoagulant. Others do nothing! Feels like we are left swinging in the wind.

Just had fibroelastoma removed 6/2/26. Everything I read pointed to chance of stroke, heart attack or sudden cardiac death. EP wasn’t concerned and said I’d probably had for years. When I saw cardiologist and eventually cardio surgeon, both agreed best removed. Involved open heart surgery. One of the risks was possible damage to valve and needing valve replacement, but surgeon was able to shave off without damage to valve. It was found when a transesophageal echo cardiogram was done right before ablation to make sure I didn’t have an clots.

Thanks, @mamadorbauman, for sharing your story. And congratulations on making it through what sounds like major surgery!
I had just had a TTE back in March 2026 and no mention was made of a lesion on my aortic valve back then. Fast forward to my recent TEE and voila! There it was, whatever “it” is, a PFE or possibly an “atypical” LE ( which makes me think it more closely fits the profile of a PFE).
BTW, I also had an ablation (6 years ago), and nothing showed up on the CT with contrast then, either. So I think this is a new development.
Like your EP, my cardiologist is likewise unfazed by this thing, and seems singularly unimpressed by its size. But since PFE’s are a relative rarity, my impression is that most cardiologists are really not all that well acquainted with the consequences of PFE’s, no matter how small.
But if you go to a a cardiac surgeon, surgery is probably their first choice….it’s what they do. So how to decide?
Was your tumor relatively large or highly mobile? If you had no symptoms, what convinced you to choose surgery?
Hoping I am not being alarmist, just extra careful in weighing the pros and cons. Thank you again.

Mine in the report was described as giant papillary fibroelastoma. 1.0x0.4,
Mobile and left aorta. EP wasn’t concerned but my primary care and cardiologist definitely felt it should be removed therefore, referral to surgeon. The idea of open heart surgery was very unsettling but having this tumor that could cause stroke was even more so. I’m a very active person and AI was telling me I shouldn’t even walk my dog. I have had multiple people in my family have strokes so I am fearful of that. For those not candidates for surgery it’s a watch and see. I’d had a previous echocardiogram about 2 years ago that apparently did not show it so I was leary that unless you have a TEE, may not show. Not sure how often those are done and the only reason mine was done was due to the ablation I was having. EP had decided that morning it wasn’t necessary but the cardiologist there said it was necessary has I had only been on elaquis 2 weeks and could possibly already have a clot.

@mamadorbauman,
Oh, your PFE was pretty sizable! No wonder your cardiologist and PCP wanted to err on the side of caution. But not walking your 🐕?! AI went a bit overboard!
(My EP never ordered a TEE before my ablation, as I had already been on Eliquis for 4 months, but my cardiologist at the time was still surprised that no TEE had been done. Better safe than sorry, my take!)
Extensive stroke history in my family, too. I wonder if there may be a genetic component to this, or if it’s just luck o’ the draw…?
Well, at least you can rest easy now that you don’t have to worry about the PFE! Appreciate your input immensely! 🙏