Further to my first posting (and thanks to those of you who responded)...I have had all of my scans and met with my family doctor yesterday morning (along with my mother who is a nurse and one hell of an advocate). I have a number of tumours, the largest measuring 8 cm.
Next steps...more blood tests, and a 24 hour urine collection. I need to have a biopsy done asap and have an appointment with a liver specialist June 11.
Again, it has been so helpful reaassuring to read everyone's posts on here...it's nice to know I am not alone...
Let us know how your tests went. Telling one kind of mass apart from another seems to involve putting together the pieces of many tests. I’ve been through many of the ones you’ve named. It’s a scary process. I’m thinking about you and wishing the best for you. Hope you have some good support at home. It seems to be a quiet time on the message board right now, but I’m checking in when I get a notice that a new message has been posted.
Hello everyone, I am new to this site. I have read alot of stuff that has got me wondering... A mass was found in my liver, I have had CT's, MRI and today went for a "Triple Phase Ct." The previous test done before today's test was not specific on what the mass is....all blood work has came back normal....I was wondering why they are doing a 24 hour urine collection on you? What does that have to do with this? I have been feeling very weak for a while now with no answeres yet, hopefully today's test will help. My GI ordered a biopsy of the mass but the radiologists would not do it with-out this "triple Phase Ct" wonder why..
Quote:
Originally Posted by kellis78
Further to my first posting (and thanks to those of you who responded)...I have had all of my scans and met with my family doctor yesterday morning (along with my mother who is a nurse and one hell of an advocate). I have a number of tumours, the largest measuring 8 cm.
Next steps...more blood tests, and a 24 hour urine collection. I need to have a biopsy done asap and have an appointment with a liver specialist June 11.
Again, it has been so helpful reaassuring to read everyone's posts on here...it's nice to know I am not alone...
Hope the new CT helps with the diagnosis. I think the triple phase imaging is just imaging without contrast, then two series of images with contrast, and will help the radiologist see the mass more clearly. If you see my posts from earlier this year, I mention that a nuclear scan was useful in distinguishing an adenoma from a FNH. A university liver specialist did not think the biopsy my GI ordered was that useful, but then each of these tumors seems so unique that I don't know that you can generalize from my case. When I went to the university specialist, I was sure that I was going to be pressured into surgery, after all, he was a surgeon. I was surprised to find that he wanted to avoid surgery if it wasn't necessary. I went to Dr. Johnson at Georgetown University. Good luck. I'm sure this is an anxious time for you. Keep us posted.
It has been a while since I posted on here, and it seems like it's been fairly quiet lately. Nevertheless, this health board is a source of solace for me...I'm still in the thick of adenoma vs FNH and it is getting rather tiresome.
I have 5 lesions, ranging from 2cm to almost 7cm, and have had loads of imaging done for over a year and still have differential diagnoses. Is it FNH? Maybe. No central scar in any of them, but perhaps they have a kupffer cell or two. The biopsy I had last winter said the largest one was indeed FNH, but then FNH can surround an adenoma and they just poked the surface, and new research articles (e-medicine and comparative hepatology are my new best friends) came out after the procedure saying that the percutaneous needle biopsy that I had done was inconclusive to differentiate between the two anyway. So we mentally threw that out the window.
I just had another MRI (w/ & w/out contrast & w/ feridex) yesterday and have a follow up appointment with my hepatologist next week. We were thinking that we'd know more by now, that we'd be able to make a decision, but...The little buggers aren't growing, but they aren't shrinking either. We've been doing the "watch and wait" thing for over a year now, and hoping for something, anything, that would be more conclusive to happen.
We want to start to try conceiving, and are worried of course about adenoma growing with pregnancy. I just don't like those morbidity numbers. Should I just go ahead and resection before trying to get preganant, so this little stormcloud is no longer over my head?
dlynnel - is "sulfur colloid" and "nuclear" one and the same type of liver scan? And you were finally able to differentiate with it? Very cool - why haven't I heard of this before? I feel like I've read everything - and I'm grateful that I checked in to the site and learned about it from you!
Also - does anyone know about hormonal birthcontrol methods *other* than oral contraceptives and their correlation to adenoma (and/or FNH)? We've been thinking longterm (post-baby) about the IUD that has localized progesterone in it (marina or something like that?) but have heard varying things from our team of MDs.
That's one thing that has been frustrating - every doctor says something different, recommends something different. Medicine is indeed often an art more than a science.
I happen to have a hemangioma on my liver. I actually have a copper-T IUD. There are no hormones in it. I had to go off of birth control pills because of my tumor. I am actually scheduled for a resection in a week and a half. I am having pain in my shoulder and pain when i breathe due to the location of my tumor being near my diaphragm. Any how, I am getting married in March and I was told that it should not be a problem getting pregnant down the road. Another thing you should think about....if you wait to get your tumor out until after a pregancy....do you really want to have a major surgery with a little one around?
Hi there neens7982 & thanks for sharing your experiences!
I didn't know that oral contraceptives were associated with hemangiomas as well...I have a little one of those, but it has taken backseat to the drama of the other lesions. What a rollercoaster for all of us, huh. I can't believe that there isn't more of a warning label on birth control pills. But I guess even knowing I could be 1 in 200,000 with this (or whatever the statistic), I probably would have taken them anyway.
Best of luck in your surgery - what a way for you to celebrate the new year, though. I am sure you and your fiancee will find some way to be joyful, even if you have to take it really easy. Will you be having it done laparoscopically, or do they have to open you up because of it being so close to your diaphragm? If you are interested in watching a video of a laproscopic resectioning, there is one online, posted at some website for doctors (I forget which, I found it earlier this year and was riveted). I am sorry to hear your hemangioma has been painful for you - good for you for taking care of it.
I really appreciate your comment about surgery post-baby - that's something I hadn't even considered. You're right, that would be hectic! Sometimes (okay, most of the time) I just want to have the surgery done, and have it over with. I admire your decisiveness there, though for me there is no associated pain or discomfort, so it's easy for me to be wishywashy. And I'm a little chicken. And scared of how stircrazy I'd go in recovery.
I have talked about the "old school" copper T IUD but have heard that the mirena has lighter flow periods and easier to insert, especially for someone who hasn't previously been preggers. Again, my inner chicken. I think that the T may be the way to go, though, because I can't seem to get a straight answer on progesterone. Estrogen is generally believed to be the bad guy (bad gal?) but progesterone is right there and may be a contributing factor too. Bleck. I hate condoms and diaphrams and sponges are so messy, so it's been rought being off the pill for me...
Okay, back to a brighter note, many thanks again for your comments, you've given me great food for thought! And I send you my happiest, healthiest, most rapid healing energy for your surgery.
I just saw that you're in NM - have you found a hepatologist and/or a surgeon there that knows her or his stuff? I'm in AK but am from NN and my family is there, from Cruces to Santa Fe. We'd been planning that if I have surgery it would likely be in Seattle (where I've been going for "tumor clinics"), but I'd rather be in NM if you have a recommended surgeon...? I'm assuming ABQ?
Thanks for your encouragement! I am definitely nervous as my surgery nears. In NM, there are no hepatologists in the area. Not even in Albq. or El Paso. I am traveling to Dallas to have mine done. I've had the same Dr. for four years there following my hemangioma. He is AMAZING. He is at Baylor. He actually did Mickey Mantle's liver transplant. So, I know I'm in good hands.
The Copper T has no hormones. The Mirena does. I was told that there is no "true" evidence to suggest that hormones cause hemangiomas to grow. I've been off of bcp's for almost three years and mine still grew. However, there is evidence that hormones causes adenomas and focal nodular hyperplasia.
Interesting though, huh? I feel good about my decision to have it out. I have my little freak out moments where all the what if's cross my mind. But, I know I'll be in good hands. They won't be able to do it laporascopically. If you have that site with the video, that would be awesome to check it out!
Best of luck in everything for you too. By the way, I'll try really hard to get on and post a message after my resection. I'm a completely healthy 29 year old, so it will be interesting to see what happens. Hopefully, I'll be pain free!!
Well this is my first time writing to you all , im so amazed to find this web site and know i'm not alone!!! I am a 32 year old married lady with a 5 year old son and i live in England. About 5 weeks ago i found a large abdominal mass in my upper right part of my abdomen . I went to my local GP who then referred me privately to a urologist as she suspected a cyst on my kydney. After having an ultrasound they told me it was definately a TUMOR of some kind and not a cyst. This immediately struck fear in my heart and im sure you will all appreciate the last few weeks have been awful. The word TUMOR to me just made me think Cancer, and having lost my mum to cancer when i was just 5, I was so afraid history was repeating itself . Last week after 2 CT scans one being triple phase CT they have told me its a 7 cm Focal Nodular Hypoplasia(FNH). I have never heard of this before , and not quite sure how they can tell to be honest . My main aim last week was to find out before xmas if it was malignant or benign , and i was overjoyed when they said it was benign. However i have now been referred to a liver specialist as i've been told it "must be removed". Its really wierd as its really mobile and i cant get comfy to sleep at night as it seems to flop accross when i turn on my side!! does anyone else have this i wonder?? Anyway im rabbiting on a bit but im just so happy to find this web site!!!! Im petrified of surgery, dont know whats involved as havent seen specialist yet and he's probably going on his xmas vacation now!! Dont know how long i will be in hospital for? , how long recovery time is ?, is it open surgery?, what are the risks? etc..... Anyway i will let you know more when i know more .
Hello all, I thought I would introduce myself and share some information about my recent finding, as I have gathered so much information from all of your posts, and thank you for same.
I had a Whole Body Scan on December 5 (the one seen on Oprah), purely for preventative reasons, and to determine if there were any issues about which I did not know. Well, be careful what you wish for.
The scan revealed a 2.3 x 3.0 mass on my left adrenal gland. My doctor ordered a CT with and without contrast, and the radiologist is pretty certain that the mass is benign. I am making an appointment with an endocrinologist for follow up, and my labs are not back yet whether it is functioning or not. I don't know what the suggestion will be, but if it is nonfunctioning, I would hope it is just to monitor for a while.
That was what I had expected, and was not too concerned knowing that the odds of primary adrenal cancer are about 1 in 1 million.
However, the scan also revealed a "subtle mass" seen superiorily on the left lobe of the liver, medial segment, after contrast which "could be" 6.7 x 6.8 cm.
The scan states "this has a linear low density center as well as a central portion that shows enhancement. On the 15 minute delayed scan, this mass is just slightly lower in density than is the normal liver. There is still an area of enhancement in the right central portion. On the delayed scans, the mass could measure 6.4 cm x at least 5.4 cm"
The impression is "not characteristic of hemangianoma, could be an FNH, and less likely an HA. A fibromaller carcinoma is in the differential, although less common."
I spoke with the radiologist immediately after the CT scan, and he stated that the odds are in my favor, and chances are it is an FNH.
Nonetheless, my mind has done its number, and wandered through the possibilities of cancer and suggested liver resection (and what that would mean for my business), biopsy, and so on.
I just wanted to share, and ask that if you had any similar test results or phrasing, to share your diagnosis.
I don't know a lot about CT, but can say that the mass was not detected on the CT without contrast (the whole body scan).
I don't know of what it means that the mass is of slightly lower density than the normal liver, or that it was "subtle" or that they can't really give me a definite on the size (does that suggest no capsule? dunno) Also, I don't know what the central portion that shows enhancement means. So, if you have some ideas, please, holla.
Thanks again for sharing your stories. I will continue to keep you updated.
Oh, and doctor suggestions in Columbus, Ohio are appreciated!
robins23pounds, firstly sorry to hear about you father not a nice beginning to the new year . i too have now had to have a MRI as my specialist was still saying 20% chance of it being an adenoma. the MRI has come back that it is def a FNH. 7cm on lower right lobe.i am seeing surgeon again in a few weeks time. can "watch and wait" or go straight for liver resection with gall baldder removal at same time. everyone has their opinion and i just dont how how i can make that decision. i have a little boy and so confused as to what to do. scared of surgery but at same time want it out!
I'll be leaving mine in tact if at all possible. I am not having any symptoms, and feel just fine, so I don't see much point. I cannot imagine 3 months laid up (I own my own business) and the cost assciated with co-pays and deductibles, and services not covered - not to mention the risk of complications given that I am feeling fine.
Let me know how yours turns out. I have to get a copy of my MRI report - I haven't done that yet even tho' my doctor offered it - he called and said FNH, and I took a break from thinking about it so much - but I do want to see it. I'll be getting copies of my whole body scan, CT scan and MRI on disc as well.
thanks for reply. i want to leave mine where it is also but its so big it not only pokes through my skin but i feel like my ribs are crushing it. i also have constant back ache. I have a copy of ct scans already - scary to look at as i can really see how big it is. worried how fast its gonna grow! if you have no symptoms prob best to leave as it is. The thought of the logistics of having 3 months off is scary, getting son to school etc. i dont like relying on people but i guess im gonna have to!
I just had a liver resection at the end of December 2007. I had a large hemangioma removed. They took out over 50% of my liver...the right lobe.
I am 29 years old and was in excellent health prior to the surgery.
I was in the hospital for a total of 6 days. My surgery started at 8:00 and lasted until 11:00. I had been advised that it could have lasted 6 hours. But, I was fortunate. I did not need a blood transfusion and everything went very well. The first day was a real blur. I remember waking up in recovery, but I felt okay. I had a naso-gastric tube which emptied the contents of my stomach through my nose. I had no abdominal discomfort at all. I had little tiny tubes that were administering anesthetic directly to my incision. The tube in my nose stayed for two days. I also had a central line in my neck. The day after surgery, I was up walking. I think my main problem was being nauseous. But other than that, recovery went really well. I was released on the 6th day. My appetite was low and I still had bouts of nausea, but for the most part, I was very tired. My incision runs from my sternum to the center of my stomach and then takes a slight curve around the right rib. The incision is approximately 12 inches long. They used glue to close it and it is looking very very good. I can't pick up anything over 5 lbs for 6 weeks. I am now almost 4 weeks out. I move around very well, but I still get exhausted. I am taking two more weeks off of work and then I plan to return. I am very happy I had the surgery done. My tumor had caused me referred pain in my shoulder and that pain is completely done. It is nice that I won't have to worry about my tumor. Aside from having blood tests every few months, I don't have to worry about anything. If you want any more information, just ask.
thanks for the story. you hear so made mixed views its so hard to know what to do. where was your tumor ?? right or left lobe?? I went to see my GP today as i just dont know what to do. I am swaying towards surgery as she said im fit and young and that goes in my favour. The naso-gastric tube sound a bit gross also the central line in your neck! How big was your tumor??
they say i will only need a 20% resection done. it sound like you are def on the road to recovery. i hope i can be as brave as you and just go for it. Did you have an epidural and were you in intensive care?? I am loosing a lot of weight as well at the moment due to all this - cant wait to eat properly again!
My tumor was on my right lobe of the liver. It was 7cm. It actually was at the top of my right lobe near my diaphragm. So, it began to hit my diaphragm which caused referred pain in my shoulder. Sometimes, it would hurt to take a breath. The nasal tube is gross, but they have to give your liver a day or two of rest. So that is why it sucks everything out. I could eat ice chips and drink juice, but that was it. I didn't eat solid food until day 5...this was due to my nausea. I think the nausea was the worst part of it all. But everyone reacts differently to surgery and anesthetic. You may not have any nausea at all. I think that if I wasn't nauseous, I would have felt a ton better and maybe would have left the hospital sooner. I did not have an epidural. I am a wuss for pain. I've had two children and needed epidurals for both. In addition, I had gallbladder surgery before and had crazy pain for that (and that was just laparoscopy). With this surgery, when I came out, I had something that administered pain right to the incision. There was literally a black purse that had a plastic ball of medicine in it. The purse had a tube that led to several tiny tiny tubes that administered medicine right to my incision. It was left in for four days. When they took it out, it was nothing. No pain or anything. I had a PCA morphine pump, but I hardly used it. Out of 15mg I could use a day, I was only using 2. I think I was using it for minor discomfort...but not actual "pain". The purse thing was amazing. I was amazed that I didn't have a ton of pain. I was in recovery for four or five hours, but then, I was sent directly to a room. No intensive care. Oh, and I didn't have any drains which was good. Everything has gone extremely well. I had an amazing dr. at Baylor Univ. Med Center in Dallas.
I was very scared going in. Thinking of all the what if's. But, I knew that eventually, it would have to come out. I do think that being younger is a definite benefit. Again, I am very glad I had it done. Right after surgery, I immediately noticed that I did not have shoulder pain like I had before. Of course you are nervous because it is major surgery! I followed my tumor for four years. It grew from 2cm to 7cm in that time. My doctor was comfortable with just watching it, but, it became symptomatic last Feb. and between Feb 07 and Nov 07, it grew 1cm. So, he decided that it really did need to come out. It is much easier hearing a doctor say that than making a decision about it myself.
Let me know if you are wondering anything else!
thanks so much for the info, im so pleased for you . i have one child and i too had an epidural which made me swell up to the size of a balloon. I am only 32 so now is probably the best time to have it out. I only found mine in november when i felt a strange hard lump.i then had the usualy worry of "is it cancer" luckily they have said its a FNH which wont turn bad he has said its "hanging off " the lower right lobe! I hope it doesnt fall off!! My surgeon is a transplant surgeon and he come highly recommended. i will ask about the purse thing next time i see him in feb. That sound really good. i have had 2 anesthetics before and was also very nauseous so prob will be if i do choose the surgery option. i just hate having to make the decision myself. like you say its all the "what ifs". if i wasnt a mum i would just go for it. i dont actually feel ill but have back ache where its hanging off and sometimes a burning pain. the only thing is im such a worrier that i know if i leave it in i will be like "whats it doing, has it grown?, whats this pain? whats that pain?" i will never rest from it . I am def going towards the surgery route and its so nice 2 hear a nice story like yours. thanks for all your advice i will keep you posted !
sorry forgot to ask something!!! how much help did you need at home when you left hospital?? were you completely bed ridden for a few weeks or were you able to do minor things?? how were your children with it all??How long cant you drive??
Re: liver adenoma or focal nodule hyperplasia 
