9cm hemangioma

[tlh]

I am 31 & just diagnosed with a 9cmX10cmX6cm benign cavenous hemangioma. I had an ultrasound (thinking it was gallbladder), a CT scan with oral & IV contrast, & an RBC scan. I am trying to find a GI Dr. who is familiar with this. So far no one has seen something this size. My symptoms include: RUQ pain, nausea, weight loss, & fatigue. The GI Dr. here said "no physical activity" until I can find a specialist to handle it.  What is the risk of rupture or bleeding? With a mass that size, is there a possibility of resection?  I just had my 2nd child 16 mos. ago; one Dr. said estrogen could have made it grow. Is there a possibility of it shrinking with male hormone treatment? I have calls into the Cleveland Clinic & University Hospital in Colombus. One Dr. did mention symptoms of congestive heart failure; ironically, 8 weeks after I had me baby I began a cardiovascular workout regimen. I experienced chest pain every workout. Could this be related? Can you tell me what my risks and options might be? My husband is a general internist here in Mansfield, OH; but we are new to Ohio. We have been very concerned, especially since we can't find anyone in this area who has seen a hemangioma this big. Does the sheer size make it that uncommon? Or do I just have to leave this geographical are to find someone to help? Thank you.

[glanz]

I mayself live in Ohio and have many hemangiomas on my liver my biggest is 3cmx4cm and have been sent to the Cleveland Clinic to no avail. I have done a lot of research on hemangiomas and our best bet is to find a surgeon who will remove them. Good luck to you.

[metro]

I am also a person who had been diagnosed with a 9cm cavernous hemangioma in November of 2001.  I had surgery on 2/16/02 and am recovering well.  Mine was on my liver, left hepatic lobe and I have done much research on this.  If you wish to discuss my research further, please post.


Thanks.

[savvy]

I am interested in your research. I've been aware of an hemangioma in my liver for the past 12 years. Four years ago, I had my first gall bladder attack. I thought it was the hemangioma, but after testing they discovered tiny, gravel-sized gallstones. They're still very small, but I've had some very bad attacks over the four years, the last one being two days ago. Even now, after the attack is over, I have had difficulty taking deep breaths without experiencing pain in the gall bladder/liver area. I can feel the inflammation in my gut. Eight weeks ago, when I had my last attack (in the past I had very few attacks), I went to the internist and surgeon. One surgeon said remove the gall bladder immediately and also that an 8 cm. hemangioma can become cancerous. I have never heard of this in all the research I've done and all the doctors I've spoken to. The other surgeon said to wait and see what happens.

My main concern is the danger involved in removing a gall bladder when an 8 cm. hemangioma is sitting right next to it. I understand from my own research that laser surgery is out of the question as that poses a greater danger to rupturing the hemangioma, but even if I decide to have conventional gall bladder surgery, I understand it's dangerous due to the proximity of the hemangioma to the gall bladder.

I apologize for rambling on. I'm worried and haven't slept. I don't know that I will find my way back to this board, so if anyone could share his/her knowledge and/or experience with me, I would be most grateful. I can be E.mailed at ***@****

Thank you for your time.

[jbennett57]

Can you please contact me thru my email ***@****.

I have a giant cavernous hemangioma on the right lobe of my liver. This now measures 17.14 x 12.4 x 11.3 cm. compared to 10 yrs ago at 7 cm. I just left my gastro doctor who is now referring me to a liver surgeon.  She is very concerned and canceled a procedure I was to have done.   My questions I had, she wants the liver surgeon to answer. Maybe you can. Since this is on my right side, could this explain the nausea I have.  I do get pain on the right so I guess that is normal. I was not concerned about this turning cancerous until I read the above. If you do any research on this, can you also find out about Epithelioid Hemangioendothelioma. My son passed away in 2004 from this rare cancer and the 2nd name does have the hemangio in it.

Anyone out there that reads this and wants to respond or email me, please do so.  

Thanks,
jmb