Has anyone been diagnosed with a papillary Fibroelastoma ?

Mine was measured at 1.1 cm in Feb 2024. They wanted to perform open heart surgery to remove but due to other health issues and 5 back fractures I was too weak to do the surgery. I go back May or June this year for follow up test.

Hope your appointment goes well. I have been trying to find out if they can do anything other than complete open heart surgery. I have read some published articles about this happening in the USA but in the U.K. they are not yet willing to consider. Yes given my complicated conditions the open heart surgery is quite high risk for me and I may end up having to be on kidney dialysis as well as bleeding risks. Mine has grown and is still just under 1 cm but they are very keen to push me down surgery. I have no implications of this on blood flow etc and am on blood thinners to prevent clots around the area. Best of luck.

I have just been diagnosed. 4/16/2026 I underwent an ablation for atrial flutter. Right before the procedure an ECHOCARDIOGRAM was done to check for blood clots. Report came out 4/29 with this diagnosis. Took a while for arrhythmia dr to call me, but he says it is nothing to be concerned about, contrary to all I’ve read on AI. Will see cardiothoracic surgeon at some point. In the meantime I’m looking for information that will settle my anxiety.

diagnosed a few months ago, during a TEE intended to be cardioversion for afib... Great Doctors but, I wish there was more experience with this... Drs now saying there is some concern the valve might not function as it should after surgery, checking if some pulmonary issue might be causing the afib... I suppose, it could be worse but, I never wanted to be distinguished by a rare health condition. I agree, most I have read sounds like removal is usually completely effective (though there is a rate of return of the tumor in some, "ten years" until it grows again, or, until it needs to be removed again? American Journal of Thoracic Surgeons) but, I guess I am glad they are cautious. Anxiety, yes... not looking forward to the recovery period, just getting moving again after a leg facture but, difficult to not be anxious waiting for the decision... getting will and other paper work in order. Do doctors who have handled these get together with surgeons seeing it for the first time? I was curios to see what American doctor had successfully handled this surgery the most often. Looks like, there is no list like that.

I was told a open heart, surgical removal is the best, only truly effective option. waiting weeks for referrals and appointments, each Dr, a bit different in their concerns and approach... so many friends have had more mature family members do valve replacement and other, sound like more extreme open heart surgeries, I feel I have a good probability of complete recovery, NOT looking forward to the months of returning to motion and strength but, as one doc put it, "you have a good ten, fifteen years of full activity ahead of you" middle 70's, over weight and out of shape but, in good general health otherwise (a fib, they plan cardioversion with surgery)
I've been reading, American Journal of Thoracic surgeons, very positive, but, even at the huge hospital handling this, one of the nations top... sound like I am the first case. One in millions? why couldn't it have been a winning lottery ticket? Good fortune to you... to all of us