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  • Are you being followed up for Hemangioma?

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    Old 05-30-2009, 06:53 PM   #1
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    susieq14 HB User
    Are you being followed up for Hemangioma?

    I wanted to know if any of you who were diagnosed with a hemangioma has any regular follow-up MRI's?

    I had 7 MRI's of my liver from October 2005 to February 2008 after an indeterminate lesion was seen on a CT scan. As you can see from the comments I list below there were varying opinions as to what it was.

    After the last MRI was done, my GI doctor said it was not necessary to do any more follow-up. I know I didn't go to medical school but I have this nagging doubt that I should be having a follow-up at some point in time.
    Do you have follow-up scans to check that it is not growing?
    Do you think I should or should I just believe my doctor who says all is well?

    #1: a 2.2 cm indeterminate lesion on right lobe of liver that does not have the typical appearance for benign hemangioma.

    #2: the lesion did not have the appearance of a benign hemangioma or cyst nor does it have any of the typical characteristics of a malignant lesion."

    #3: no change in lesion and does not have typical appearance of either hemangioma or cyst but it could represent a small adenoma.

    #4: Abnormal lesion at tip of right lobe of liver present without change. This may represent an area of Focal Nodular Hyperplasia.

    #5:"complex cyst with a possible 2mm central nodular enhancement which could represent confluence of enhancing septa" My GI doc told me that the expert radiologist was "pretty confident it was a hemangioma" but wanted another done in 6 months.

    #6: "stable liver lesion likely representing hemangioma"

    #7: "right hepatic lobe hemangioma without interval change"

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    Old 05-31-2009, 03:14 PM   #2
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    McRegnal87 HB User
    Re: Are you being followed up for Hemangioma?

    It sounds like you ought to be screened on a fairly regular basis as the comments from your previous reports show that the diagnosis of haemangioma is not definitive. I have a 4cm FNH or adenoma which was found in May '08 and I have been told that I will have another MRI in August and regular ultrasound scans- if there is no sign of growth then the scans will be less regular but I don't think the Drs will forget me entirely- I hope not anyway.
    I suggest you go back and ask some in depth questions about your possible diagnosis and see if they will scan again

    Old 06-01-2009, 12:33 AM   #3
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    LagunaNiguel HB User
    Re: Are you being followed up for Hemangioma?

    Hi. I had MRI 2005 Dr LIver USD said nothing under your 17 cm tumor. Your ok. You are not in pain. Come back in a year and we will scan. I came back in a year. He said are youin pain? No. I have sick people here -go. He did not check me. Now here is is 2009 and I decided to get second opinon from LIver specialist at USC. He looked at old MRI from 2005 and said if I had seen you 5 years ago I would have done surgery. You can see mass is growing and will coer you bile ducts. Better to take out now (2005) before hemangioms starts to run over bile ducts. Much more difficult to remove hemangioma wants it runs over bile ducts and can also damage the ducts in the process of the removal of the hemangioma. I should have had follow up. New liver dr USC says it is not size of hemangioma but the location that determines if it needs to be removed. He said right side of liver is the area that is subject to complications. Now I am having 2 cat scans this coming week to see how much hemangioma has grown in 5 years. I will have surgery. Cat scans will determine if it is emergency surgery or not.

    Old 06-02-2009, 07:20 PM   #4
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    susieq14 HB User
    Re: Are you being followed up for Hemangioma?

    Thank you both for your opinions and sharing your situations. I've always felt that I should have a follow-up since it wasn't such a definitive answer as to what was seen but the 2 GI doctors I saw both kind of shrugged it off and said it was not grwoing so it was nothing to worry about. Well how do they know it is not growing if they don't monitor it? It may have not changed in size yet but it may in the future and if there are no symptoms to alert me.... As you have probably experienced it is not always easy dealing with the medical professionals.

    LagunaNiguel - I'll say a prayer for you that all goes well with your scans and that you have time to prepare for your surgery.

    Mc - Best of luck in August with your scan - hopefully it has not grown and you have a good doctor that believes in follow-up. nice to meet you from "across the pond" - kind of amazing to be able to get advice from someone so far away but very heartwarming.

    Take Care!

    Old 06-29-2009, 08:07 AM   #5
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    moonaggie HB User
    Re: Are you being followed up for Hemangioma?

    Susie - the best thing I can tell you is to be your own advocate. If you are not comfortable with the response you get - GO TO ANOTHER DOCTOR!

    I was diagnosed with 5 hemangiomas on my liver in April 2006. They first showed up on an ultrasound and were further diagnosed with CT scans and an MRI. For the first year, I had scans every 6 months and then they were annually. This was the recommendation between my family practice physician and she consulted with a GI specialist and the radiologist. Since they appeared to not be growing, and they could have been there my whole life, I was okay with this schedule.

    In January 2009, I went in for my annual ultrasound and it was determined that I had a new lesion on my liver. The radiologist report stated that it was probably another hemangioma but that it could also be an adenoma, focal nodular hyperplasia or a carcinoma. My family prac dr consulted with the radiologist who suggested I return in 6 months. I was certainly NOT okay with the answer so I asked for a referral to a liver specialist and my dr agreed. I was them referred to a top notch liver specialist/surgeon who deals with this stuff daily.

    After multiple MRIs, it was determine that I had not 1, but 6 new lesions (some of which may have been missed previously on CT scans) that were indeed focal nodular hyperplasia, in addition to the 5 previously diagnosed hemangiomas. I am due to go back in August for a 6 month scan to see if they have grown. He (the liver specialist) will only use MRIs to do the scan because it is too difficult to diagnose with less resiliant scans.

    At this point, I don't expect any intervention because I am not having any symptoms. Liver resectioning is not really an option because there are so many and they are throughout the liver and are of various sizes, the largest which is 6-8cm if I remember correctly.

    Good luck!!!! Just remember, if you aren't comfortable with something, go elsewhere or demand that you get a referral!!

    Old 07-01-2009, 03:22 PM   #6
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    neens7982 HB User
    Re: Are you being followed up for Hemangioma?

    Hi Susie,

    I actually have several hemangiomas on my liver. From 2003 until 2008, I had an MRI yearly with gadolinium contrast to observe them. The gadolinium helps give a definitive diagnosis for hemangiomas. The reason I had one every year is because one of my three grew. I was told that if I had two scans in a row showed no growth, there was no need to do follow ups unless I had pain. However, my diagnosis was definitive. Have you seen a liver specialist (hepatologist)? I flew to Dallas to see one as my town only had gastroenterologists. My hemangioma grew to 7cm and pressed on my diaphragm, so in 2008, my entire right lobe removed. I still have two remaining on my left lobe. But, I was told no follow up was needed on those unless they became symptomatic.

    Best of luck to you!

    Old 07-05-2009, 08:17 AM   #7
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    susieq14 HB User
    Re: Are you being followed up for Hemangioma?

    Hello moonaggie and neens7982,
    It was such a pleasant surprise to see a response to my old post. Thank you for responding and sharing your story and opinions. I do know that you have to be your advocate in the health world and appreciate your reinforcing that. I have had a few issues within the last 5 years and have really taken a muchmore active role in my health care. I changed my PCP and Gyn in 2006 (Unfortunately I just got a letter from my PCP that he is leaving private practice to become a hospitalist. The doctor that is taking over his practice is very young and has only been praticing medicine for 3 years. He is not an American and did not go to an American med school. i'm not sure if I will stay with him.) Anyway I did demand that a referral to a new GI located at one of the big 3 teaching hospitals in boston and she was the one monitoring my liver. She assured me that my MRI results were being read and reviewed by the director of abdominal MRI's and that he knew what was right. but you bring up a good point - I have not seen a liver specialist. I will see if perhaps this is possible.

    In the meantime I wish you both good health. You seem to have a little more to deal with than me. Take Care! and thanks again!

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