Thanks so much for sharing your story! It was very intersting reading! Don't apologize at all for being wordy about yourself - after what you have been through you deserve to be!!!
More importantly I'm happy for you that you had a good experience and are on the road to getting answers and resolution to your liver problems. How nice that they allowed your husband to stay with you. What an experience for him and it speaks volumes about how this hospital cares about their patients!
I wish I could say the same about a recent colonoscopy I had in December at a satellite facilty of one of the big 3 teaching hospitals in Boston. It was anything but "patient-friendly". Neither I nor my husband expected them to allow him to view the procedure but we were both expecting that he would be allowed to accompany me in the "waiting area" and be there when I woke up. This was allowed in our local community hospital. Instead "Nurse Ratchet" argued with me that that was hard to believe! So I was called in a little before 9 and did not come out to the waiting room until 2:30! Because I needed antibiotics administered in an IV drip before the procedure (due to a heart murmur) that added 90 minutes to the "before" time which no one told me nor poor husband. I begged the other nicer nurse to please tell my husband that it would be longer than expected since it wasn't starting on time. Then it got extended because the drip needed to be stopped when I began having chest pains and they needed to do an EKG etc... At that point I was so beside myself I demanded to have my husband come and see me. Nicer Nurse did oblige but Nurse Ratchet scowled! I don't understand how people like that can be allowed to work with patients who are often upset, frightened or nervous etc. Well off my soapbox for now. and enough my story.
Let us know the biopsy results. Crossing my fingers for you!
Does anyone have experience with Georgetown University's Dr. Lyndt Johnson or Dr. Amy Lu? My gastroenterologist is sending me to Georgetown for a consultation. It looks like one surgeon has an extra ten years experience and has won many accolades, but the younger one, who must be good too, might have more training in the latest techniques and perhaps be more available. I'm told that both do several resection per week. How did you choose among specialists/surgeons? I guess I'm leaning toward the most experienced. Thanks.
I am standing by for my biopsy results - I should hear back by tomorrow for sure. I'm sure I'll post soon with the outcome...
We haven't heard from LesTX in a while - are you out there? Are those work deadlines still "killing you"? How did your meeting with the docs go? What surgery outcomes are you facing? How are you doing?
Zetah - I am showing my ignorance here, but I have no idea what GGT blood tests are. My Alk Phosphate levels were within normal range at 51, so maybe that's something we didn't do...? I hope that you figure that out. Since I likely have adenomas, I don't know as much about FNH and their presentation as multiple lesions. I know adenomas aren't usually multiple, and mine are - so here's to being *special*. My next appointment will be when I go in for my pre-op on April 4th (with surgery on the 6th), unless my biopsy results come back as HCC. Good luck with your appointment on the 16th! Will you be seeing a hepatologist then?
Susieq - I am so grateful that my hubby was with me throughout the biopsy process - everyone we met with at UW was absolutely wonderful and patient-friendly. I shudder to imagine your experience with "Nurse Ratchet." You should definitely submit a comment card on that one! I trust the colonoscopy turned out okay in the end...?
dlynnel - I have no experience with Georgetown, though of course it is well-known as a wonderful facility. My surgeon was basically chosen for me, and he serendipitously is the one who TriciaB recommended - he received his MD in 1982 and completed his residency in 1987. In researching surgeons, I had the same questions you had - go with one who has years of experience, or one with more recent education and possibly more up-to-date knowledge? RFA and laparoscopic surgeries have made tremendous advancements in recent years...but I'm guessing that anyone at Georgetown would be well-versed in the latest and greatest. Keep us posted...
Signing off for now. Hope everyone is doing well. We're finally getting some good sunshine in AK, which is helping my spirits considerably, though with it comes -4 degree temperatures...sigh.
Last edited by moderator2; 02-28-2007 at 08:06 AM.
Yes I have been seeing a hepatologist since January of this year. My Alk Phos (ALP) has been high for over a year and because of my 11 lesions regarding both lobes of the liver they are running more blood test, one of them the GGT.
GGT, if raised by itself, is not a bad thing (it can be raised by smoking, artificial sugar, ect.) but if raised with other elevations in the blood like ALP, AST, ALT it can show that there is a problem with the bile ducts in the Liver. My understanding is if the ALP is raised, like mine, and the GGT is not then it could mean that I have some kind of bone diease as well. I am hoping that it is raised because I just want to deal with one problem.
I'll bet that they didn't do the test on you since your ALP is not elevated. Please let us know when you get your results from your biopsy.
Amy - I had the laproscopic procedure (w/ Dr. Yeung), on 12/1/06. I had a 6cm adenoma on the bottom left section of the liver, so they basically cut the "tip" off. You are much like me in all the concerns you have about eating, drinking, healing time, pain, etc. Of course everyone is different, but this surgery was one of the most surprising experiences of my life. I dwelled on the horrors of it for months prior, and when I was in the hospital, I honestly thought "wow, this isn't so bad...when does it get worse?" But it never did. There will be some pain for the first few days, but you'll manage that with meds, and those days will end up being pretty blurry once you get home. I felt like I had a grapefruit in my abdomen, but it was more of a discomfort than a stabbing pain. I just had this weird sensation that I had to hold it in or my insides would fall out. I stayed on top of my meds (oxycodone) and within 2 weeks I was out having dinner and going to the store with my husband. My mom actually got mad at me b/c she thought I was doing too much. Of course I wasn't driving, and I walked very slowly and slightly hunched over. All in all, I'm actually glad I had this challenge to face, and overcome. I had 6 restful weeks away from a stressful job, and I got to stay home with my dogs and focus on ME. I didn't drink again until about 7 weeks after, and when my labs were normal again. I know this is lengthy, but I hope it helps. I feel especially confident in your recovery just knowing we have the same surgeon.
My GGT came back within range, so does that also put me into possibility of bone diease also, since liver or bone is what makes Alk Phos Elevated and since the GGT is not elevated it shows that the Alk is not coming from the liver? Crap!
Now to top off this wonder stinking cake, my Mitochondrial (M2) Antibody test is elevated at 29.8.
They want me to repeat the test, but since I am 9.8 above the norm, do they really think that I would drop that much?!
This test, in case some of you don't know, is for Primary Biliary Cirrhosis (bile ducts).
11 lesions effecting both lobes, only one has been comfirmed binegn FNH the others could be Adenomas. I was informed, by my Hepatologist, that they don't know unless they biopsy all of them. And now PBC!!!!!
I am really getting scared here, I have two small children and my insurance is under my job. Everyone, not the doc's, is telling me to drop my HEP doc and go to the Mayo Clinic in Rochester, MN. I don't know what to do, Please have any of you guys gone through any of this???
I could really use some positive stuff right now!
Sorry, I guess I just needed a shoulder. My husband just gets pist when I try to talk to him. I know that he is scared and frusturated because he can't fix any of this for me.
I guess I just needed to vent and maybe some direction & info. I have googled it, but with all of these lesions what does it mean?
I jumped into this discussion with some questions but havenít told you about myself. Iím always surprised to find that others are having similar experiences. At the same time, Iím equally surprised by how varied and unique peopleís situations with these tumors can be. Trying to get my mind around your situations helps me ease up on obsessing about my own. Iíll keep trying to follow what you have to say, and Iím wishing the best for each of you.
Thanks to those who have responded to some of my questions. Amylizanne, itís hard to believe Iíd tell anyone facing surgery that she was lucky, but I think youíre so lucky to be able to have your surgery laparoscopically! Zetah, I hope your blood test goes well (I havenít heard about this test). I also hope your doctors are soon able to propose a way of managing your situation that makes you feel that itís finally being understood and that youíre being well cared for.
Iím fifty years old and have never taken birth control pills (except for a week or two at nineteen). I went in for a CAT scan last year when I had a urinary track problem. A 4.5-5 cm tumor was picked up and identified as FNH or Adenoma or ďpossibly another type of tumorĒ. My urologist said it was probably nothing and wrote me an order for an MRI six months later. This time the radiologist identified it as an Adenoma. My urologist said Adenomas were always unproblematic and only seemed concerned to make sure it wasnít growing. He wrote me an order for another MRI in six months. This last MRI identified the tumor as FNH.
Much as I liked just having the tumor followed, my readings on-line told me that this probably wasnít the right treatment. The urologist hadnít ordered a blood test or anything. My gynecologist agreed too. So I took my case to a gastroenterologist in late January. She didnít seem too concerned either, though she ordered an AFP and CEA test (they came back low). She said sheíd have a radiologist friend at the hospital review my films with her.
Apparently at the hospital, a couple of radiologists told her that the tumor wasnít exactly like an Adenoma or a FNH, so she called and told me they were ďquite concernedĒ (which really freaked me out) and that I needed a biopsy. If the tumor could be identified, and was not malignant, she said sheíd follow it. So early this month, I had a CAT guided biopsy. The results came back as benign, and likely an Adenoma. Unfortunately, at this point the gastroenterologist looked at the literature (probably the same stuff I was searching on Medline) and said that a 4.5-5 cm tumor was too large for her to follow. Wish sheíd thought ahead a little more and not gotten my hopes up. Iím going to take my self-education more seriously in the future. Hopefully, at the universities, Iíll feel like Iím in the hands of experts.
Now, I have an appointment with a surgeon at Georgetown to see if he thinks the tumor needs resection. Iím also thinking about getting a second opinion at Johns Hopkins. Is anyone out there able to recommend a doctor at Hopkins?
Have any of you heard of someone who had an Adenoma yet never took birth control pills? Iím kind of concerned about the fact that Iíve never taken them. I wonder if the tumor might only be a FNH (as I have no symptoms, it would be terrible to bother taking it out and finding it could have been left). On the other hand, Iím panicking because the likelihood the tumorís HCC seems greater too. I donít have any Hepatitis B exposure that I know of, but I did live in South America for nine years while growing up. Should the fact that Iíve had a biopsy ease my mind some about HCC? Iíve read that a biopsy canít rule out well differentiated HCC. Does a benign result at least mean HCC is pretty unlikely?
My appointment at Georgetown isnít for several weeks because of the doctorís schedule and my plans to visit a sick mother-in-law. Iíd like to take the consults at a leisurely pace and get in some other family obligations before a likely surgery. Also, my sonís home from college for spring break, and Iíd rather not be going for a consult that week. I donít want him to overhear too much talk about whatís going on and get stressed. The surgeonís nurse seemed to think that it was okay to not rush. Does taking two or three months to work things out and prepare for surgery seem reasonable?
Oh, I have one more question. My ďAdenomaísĒ on the right posterior lobe of my liver, section 7. I just took a look at it on my CAT scan disk and it looks like itís close to the surface and not close to the artery. As I said before, itís 4.5-5 cm. Has anyone heard of laparoscopic surgery on a lesion like this? I understand that the back right is a difficult place to reach, but I read about a hand assisted technique and am wondering if it would help in this case. Is a lesion like this too large for any kind of ablation?
Iím so glad for this discussion. Iím amazed at how open, brave, and kind you can be when each of you has so much going on. And most of you are so young. You are an inspiration! Thank you.
I was posting my message while you were posting yours so I hadn't heard the latest. I can see how you'd be really scared, and that you need to understand just what this means. Can you talk to someone at a church or on a help-line and get some support right now? Sounds like your husband really cares, but can't express it. Hang in there.
Yes I have talked, just today, to two ladies from church and have made an appt. with my primary. The reason for going to the primary is that I am a little concern with my life in the hands of my hepatologist.
The reason for this is that within a 24-48 hour period of having my MRI, CT and other viable documents going back to 2000, they had missed place them. During this time they were also scheduling an appt. for biopsy and I had to pick up a 2nd copy to take to the hospital. HHMM
Once I got to the hospital for the biopsy the surgen had no idea who sent me in for the biopsy and ended up calling my Gastro doc before I even knew who they were calling.
If this doctor's office can not keep my records, which were finally found after my biopsy, or communicate with the hospital/surgen who they have sent me to then how can I be confident in putting my life in their hands?
OH! What a mess!
I am going in today and telling my primary to send me to the Mayo Clinic in Rochester.
I meant to answer your posting before jumping into my "thank you" to you.
I'm 45 yrs old started with 5 lesions in 2000 and now have 11. One confirmed FNH but the other 10 could be either FNH or Hepatic Adenomas, I was told. I have heard of people having large nodules removed even if they do not have pain or other symptoms.
I also have never taken B/C for any length of time and had a complete hysterectomy back in 2000. I also have not taken any hormone supp. either because they have a tendency to cause these lesions to grow.
I have been told that FNH are cells that just go wacky but I am not sure if that is the same for adenomas.
Please keep me informed on how you are doing and your appt.
I wish you luck. My experience with research hospitals so far has made me feel very positive about the quality of their care. The doctors’ nurses seem on top of what information is needed, and the doctors seem able to see patients fairly quickly. I’m betting the level of organization and insight the Mayo doctor can provide will be much better than your everyday doctors can give.
If Mayo Clinic is like Georgetown, you’ll probably be asked to put together a packet with everything you have so far (films, biopsy and radiology reports, blood work, and your doctor’s clinical notes). Probably the receptionist at your hepatologist’s office can copy your file for you (now that they’ve found it) and you’ll be set. Your films can be picked up on disk from the radiologist. It will be good to have an expert look at the whole picture. I think that deciding to go to Mayo's a good decision.
Keep talking to people who can help support you. I don’t think many doctors have the time or know-how to provide support, though, I find many nurses can be wonderfully patient and caring. I hope you find some nurses like that at Mayo. It sounds like you maybe have a primary care doctor you feel can help you put together a plan. That's good.
Last edited by dlynnel; 03-02-2007 at 01:32 PM.
Reason: correction: disk rather than CD
I am even more concerned now than before I went back to my primary yesterday. My husband and I feel that he is not going to help me get into the Mayo Primary Biliary Cirrhosis Clinic in Rochester. I told him about how I feel that my Hepatologist is going to miss something because of what has happened so for with his office. MY PD made the comment, "but they are finding what is wrong with you." I finally broke down in the office and told him that I want to be were they deal with this diease everyday, the Mayo clinic treats 500-600 PBC cases a year. The end result is a liver transplant and I don't want to end up in that situation before I have to. Nothing cures this PBC diease, but with the right meds they can slow it down even more.
He told me not to jump the gun that this could be nothing. I told him that I did not jumped the gun 7 yrs ago when they told me that I had 5 hemangiomas, I didn't jump the gun (in Ocotber, 2007) when I found out that now I have 11 hemangiomas, I didn't jump the gun in Jan when I was told that they were either FNH or Adenoma, and I didn't jump the gun after my biopsy when I was told that the other ten can not be rulled out Adenoma and that I might need more biopsies in the future to make sure that these are not going cancer.
Now I have 11 lesions (that they can't rule out Adenoma), abdomal swelling (can't fit into my usuall pants), Osteoporosis, taking meds for upper abdomenal pain (they think intestine problems), high cholesterol & have tested positive for PBC----I think that I have a reason to jump the gun now!!!!!
I told him that I have done a lot of research on this and I want to know if he thinks that all of this, except possibly the lesions, could be related? His answer----I guess they could be.
Oh my Gosh! Calgon take me away!!!!!!
Don't know if I can take much more of these doctors.
The end of the appointment was that they reran my AMA & GGT blood test, and my PD is going to call both my gastro & hep doc and get all of the facts and then SOMEONE would call me.--someone--who someone? UHG!
Am I over reacting? Am I jumping the gun? Maybe we should just ad--needing mental help to the list!
I hear you loud and clear about dealing with these doctors and the whole darn medical profession. It is very, very frustrating. And extremely exhausting and nerve-wracking! I wish I had some answers for you but unfortunately I am trying to understand what my own "indeterminate liver lesion" is so I can't give you any advice other than to keep after your doctor and insist on going to Mayo if that is what you want to do.
I had some bad experiences at my former GI doctor due to his inefficient office staff and his overwhelming patient load and total nonchalant attitude. Also wasn't getting much satisfaction from my Primary Doctor so I changed to a new PD in September 06 and after much cajoling he agreed to give me a referral to a GI affiliated with the #2 teaching hospital in Boston. You have to advocate for yourself because no one else will! So give your PD a few days to consult with your 2 specialists and then call him back and ask for his decision. Better yet make an appointment to see him again.
You're not overreacting! You are reacting very normally for someone in your situation.
I wish you luck!
P.S. I also wanted to offer you a
(((((((((((((((((((((((((((((((BIG HUG))))))))))))))))))))))))))))))))))))) )))
thank you so much for those kind words. I am a little better now. LOL
I have been dealing with so much in such a short period of time and the pain the last 4-5 months have, at times, been unbearable. I think that it just finally broke my spirits.
I am going to wait for the test to come back, though I really don't think that it is going to drop 10 points. Then if they don't send me and my hep doc doesn't make some changes, I will send a packet with copies of all of my stuff to the Primary Biliary Cirrhosis Clinic (Mayo ) myself. I am told that I can do that and I don't want to wait another 7 years. I just really need to know what stage I am in.
May I ask, what is going on with your lesions? Do you also have multiple or are they having problems figuring out what they are? How is you blood work?
Thank you so much for your hug, I can really use them.
There’s an interesting 60 minute web broadcast of tumor ablation and laparoscopic liver resection performed at the University of Cincinnati in 2004 available on the web. It’s called “Replay of: Innovative Liver Surgery to be Broadcast Live from University Hospital”
I think the broadcast was made for the purpose of training surgeons about laparoscopic techniques. Many of the tools and techniques seen here are probably used in open surgery as well. I’m usually squeamish about this kind of thing, but I found it comforting to know some of what goes on in the operating room during resection. A surgeon talks about resection and ablation in general, and explains what the surgical team is doing while the procedure’s being filmed. It’s amazing how organized and neat the surgery is, and the surgeons inspire confidence.
Last edited by moderator2; 03-10-2007 at 07:54 AM.