searching for support (group or site) or anyone else w/ same.. have a benign tumor probably caused or enlarged by oral contraceptive use. approx 5 cm in size, directly in center of 3 branches of hepatic artery. waited for shrinkage with no result. Causes pain just below rib cage front and/or back when sitting or standing, horizontal is the ony semi-comfortabe position. only treatment available is surgery to remove w/ approx 1/2 to 2/3 or liver with it. because of size and location liver cannot be resected.

Hello - I have hepatic adenomas as well. I was just released from the hospital recently. I am very curious to find out the course of treatment.

so far the options I'v heard are 1. stop ocp's and wait for shrinkage
2. "shave" the tumor with a laser type treatment (not recomended near blood flow, the blood carries the heat away from treatment area so it isn't as effective. The heat can also cause blood clots.) This kills the tissue, but it is still in place.
3. remove tumor
I'm going in to hospital on Nov 13th for removal, hopefully a resection, although they told me I could lose 1/2 to 2/3 of the liver.
what treatment options were you given? apparently there's no drugs or radiation types for this.

My Doctors want me to see a specialist at the University of Pittsburgh - Falk Clinic. His name is Dr. Fung. Now my Doctors arent sure if they are in fact adenomas. Who is your Doctor???

Dr. Andrew De La Torre at University of Medicine and Dentistry in Newark and I've seen Dr. R. Reddy at University of Philidelphia. Both in the Liver Transplant divisions.

sorry, Dr. K. Rajender Reddy in Philly. Mom and Sister both work for Gastroenterologists, sis said she thinks there's a center for liver diseases in Ohio somewhere.you'll have to look into it. hope it helps...I'm getting down to the wire..1 day to go and scared as all h**l!

MADE IT! all is A-ok . tumor was encapsulated so I still have my whole liver!!!!

Hello,
I am in the waiting process to be re- ct scanned at the in of April. Dr's can't figure out if my 4 cm mass is an adenoma or a FNH. If they decide it is an adenoma, I may have a resection. Can you please tell me about your surgery.. if the surgery went smoothly, length time of procedure, recovery immediately surgery, etc.?

Thanks for any input. I'm very scared.

Sally

Hi, I am looking more more detailed info on the liver resection surgery. Info like hospital time, incision site, recovery time. I have a suspected 4.8 cm hepatic adenoma. Waiting to hear more from docs. I live in NE area so either Providence or Boston would be my options. Any info would be appreciated.

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christine :-)

I had a successful resection 11 years ago after an 11cm tumor ruptured. I was diagnosed with Adenomatosis. I still have many of the tumors after approximately 70% was resected. Surgery and recovery were both excellent. I was up and back to work in less than two weeks. But you should know I am strong, determined and fearless.

I recommend anyone who needs a resection to make certain you are well informed, confident with your Doctors and know ALL of your options.

My question now is.... Does anyone know anything about getting pregnant and the specific stats on hormone receptors with respect to Adenomas and specifically Adenomatosis????

I just recently found out I probably have an adenoma in the middle of my liver (they can't rule out hyperplasia). My doctor wants me to wait 6 months and get a CAT Scan. But I am in constant pain on my right side. It is about 6 cm. I want to know if there are any treatments out there. I went on the Mayo Clinic web site and there was something about alcohol injections. I think the doctor doesn't want to do a resection because of where my tumour is located and they would have to remove so much of the liver. I want to find out the best doctor out there for treatment. Any suggestions? Thanks so much.

in sept 2002,at the age of 23 i had and lost a healthy baby girl(at 36 wks) due to a ruptured hepatic adenoma that put a 6inch tear in my liver and caused internal bleeding for 3 days, put me in a coma for 2.5 wks, caused me to come way to close to death more than once and a list of many other health problems over the next 8mths and counting.if it had to be done i've had it or i am getting it.my point-had i not been pregnant this undetectible tumor would have been found over time with the proper scheduled symptoms and treatments.hormones throughout a pregnancy cause these types of tumors to grow rapidly. needless to say this is a very rare and complicated case that only happens to 1-1,000,000,000 people!

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oh my god- i'm so sorry that happened to you! You are a strong woman! As for Adenomatosis, you might want to check the board on Liver Tumor Surgery- i saw something there involving pregnancy I think. good luck!

Bizarro- hi, you're in Lindenhurst. I'm in N.Babylon. I've been seeing an excellent surgeon in West Islip, Mark Schwartz, who spared me from 2 surgeries so far, because he was the only one who thought it was adenoma from the start and after CT's and Mri's he wasn't convinced even though the other doctors were ready to proceed on a different diagnosis so he had me do a liver biopsy in Good Samaritan. I will tell you that after 3 months of being on a rollercoaster, I finally have confirmation that it's adenoma. So, I think you should really look into the biopsy. It's really the only accurate way to tell. Once you test the tissue it's quite clear. If you've read articles on these things you'll see that FNH has a central scar, biliary ducts, and kupffer cells. Adenoma doesn't. Unfortunately, with scans you can't always get a correct diagnosis. Mine was in a critical spot and the doctor that did the biopsy was great! I had it done on Wed and the soreness went away yesterday (after 4 days you'll feel normal). I can tell you more about it if you want. I know you'll feel better once you know.

To SLD4129
Thanks so much for your reply. I already had a biopsy and the doctor believes it's adenoma but still can't rule out hyperplasia. What I am most interested in is what treatments other than surgery are available for these things. My adenoma is in a really bad place (right above the vena cava) so surgery may not be an option. My thought is that if they can get to the thing with a biopsy, can't they get to it with something that might shrink or kill it? What are you going to do with your tumour? Let me know. Thanks.

Hi I'm new to the list. I had a ruptured adenoma last August 2002. I had a lobectomy and recovered well. The problem is I still have multiple adenomas that my surgeon wants to resect (1/2 the liver). To add to the complication I have just discovered that I am pregnant ( a no-no with adenomas). My surgeon is away on holiday until next month so I'm seeking some guidance.Has anyone gone through a pregancy with hepatic adenomas? Mine are mostly small except for one that is 4cm. I am aware of the risk of rupture since I have already gone through that. My previous adenoma was close to the surface and fortunately the rupture did not cause peritoneal bleeding since it was contained in the Willicks sac. I am aware that the elevated levels of estrogen associated with pregnancy can cause the adenomas to grow and rupture. If any one has any experience with this kind of situation I would really be grateful.

Many thanks!

Hi everyone. It is so helpful to read your messages since all I've been told since being dx with two adenomas in Jan. is how rare these tumors are. Currently, I am being monitored by MRI since my tumors have shrunk since going off the pill 6 mo ago. I have two and both are under 3 cm. Fortunately, I have no pain or symptoms of any kind. Has anyone else been advised to monitor their tumors by MRI? Initially, my doctor recommended surgery but changed his mind after noting some significant shrinkage. I'm relieved not to have to have the surgery but I remain frightened of the small risk of malignancy.

I'm new to the list...but in May 2003, I was diagnosed with multiple hepatic adenomas. They were found on an ultrasound done because I was having adominal pain but it wasn't on that side. The doctor sent me for a MRI and after the results of that test, I had two liver biospies done. The radiologist had not seen anything like this at my age which is 31. Of course this scared me. After the second biospy I was told to go off the birth control pills and they would recheck me in 6 months. So basically I am in the waiting period, like a few of you are. I still worry a little about these tumors in my liver and what I should do because my doctor hasn't really giving me any options except to wait and see in 6 months if there are any changes. Hopefully in 6 months I will have more information. Any advice....

Thanks

Originally posted by jzcanada:
Hi I'm new to the list. I had a ruptured adenoma last August 2002. I had a lobectomy and recovered well. The problem is I still have multiple adenomas that my surgeon wants to resect (1/2 the liver). To add to the complication I have just discovered that I am pregnant ( a no-no with adenomas). My surgeon is away on holiday until next month so I'm seeking some guidance.Has anyone gone through a pregancy with hepatic adenomas? Mine are mostly small except for one that is 4cm. I am aware of the risk of rupture since I have already gone through that. My previous adenoma was close to the surface and fortunately the rupture did not cause peritoneal bleeding since it was contained in the Willicks sac. I am aware that the elevated levels of estrogen associated with pregnancy can cause the adenomas to grow and rupture. If any one has any experience with this kind of situation I would really be grateful.

Many thanks!

Have you spoken to your doctor? If so what did he say about your pregnancy? Just concerned.

Thanks

I was diagnosed with a hepatic adenoma in May of this year. It is located on the inferior vena cava and is 5cm. I am a healthy 32 yr old female who had taken birth control pills for 12 yrs straight. I have seen several doctors, had CT scan, MRI, Nuclear scan and ultrasounds. One surgeon is leaving it up to me as to remove it or monitor it.I have been experiencing pain on the right side under the ribs that radiates around to the back. Doctor's have no idea what would be causing that.Have been advised that we should just monitor tumor and not remove it unless it is causing pain. I am going to ask for a biopsy just to ease my mind. Has anyone had one removed around the vena cava area? Has anyone heard of someone that had a tumor turn malignant? Please advise. http://www.healthboards.com/ubb/smile.gif

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R.Williams

I was just diagnosed with 4 hepatic adenomas. Three are 5-6 cm. and one is 1cm. Two of the three are "markedly compressing the inferior vena cava". I am just in the beginnig process of getting oppions about what should be done. They did mention the possiblity of "emobilizing" the blood suppy to the adenoma, thereby shrinking them. They also stated sometimes, chemo/radiation is used to shrink them. If I get referred for surgery they said it would be to Barnes in St.Louis. (I live in Arkansas). I have no pain or symptoms. The literature I pulled from Medline, stated there was a 10-20% chance that adenomas turn malignant with time. It was recommended that I get baseline "AFP"(blood protien that increases with malignancy). Has anyone had any experience with "embolizing" the adenoma? Diane

My doctor is recommending monitoring my 2 adenomas via MRI every 6 months. At my last scan they had shrunk since I went off the Birth Control Pills 3 months prior. I still worry about malignancy but my doctor assures me its a small risk and that if anything does change we would catch it early enough to remove it via surgery at that point. I still feel uncomfortable about having them inside me but I am also afraid of such a major surgery. Please share your experiences and information.Thanks.

[This message has been edited by bspeech (edited 08-29-2003).]

Thanks to kdgva for your concern. Having discovered tht I was pregnant with multiple hepatic adenomas was a very difficult situation.My surgeon was away on holiday and I saw his collegue who consulted with other specialists and informed me that "they did not have enough science to guide me" in my decision as to whether or not to proceed with the pregnancy.In other words, they had no definitive answers. One possibility he gave me was to monitor the tumours with ultrasound during the pregnancy, and hope that all goes well, or else terminate on medical grounds. Doctors know that pregancy is a risky situation for women with adenomas, but the problem is they cannot quantify that risk. My own review of the medical literature revealed only very tragic outcomes for women in this situation that have resulted in maternal and invariably fetal death.

A couple of weeks ago my surgeon (a reknown specialist) finally returned and he said he felt that monitoring via ultrasound gives a false sense of security given that tumour size alone does not implicate the possibility of rupture, and that it would be during the third trimester when the tumour enhancing hormones would really kick in and by then it was very risky anyway(if the tumours rupture at this stage little could be done). At first he discussed the possibility of second trimester surgery for a liver resection to remove the tumours (with all the attendent risks involved), but finally he counseled me to terminate the pregnancy since there was a clear risk to my life. I already have two other children (age 9 & 13) to consider and so after much prayer and soul searching, I went through with the termination on medical grounds. This was a very difficult and heart wrenching choice to make.

I was also very disconcerted that the obstetrician I went to see was not even aware of the link between adenomas and oral contraceptives! I wish I had known more about the risks when I first started using them. In any case, I am now planning to have my second liver re-section sometime later this fall.

Thanks for your concern and my best wishes to all in the group.

I'm sorry JZCanada that you had to go through such a trauma and that you now have to undergo liver surgery again. Did you know you would need another surgery at the time that you had the first? How many adenomas do you have? I have 2 and am currently monitoring as they shrank somewhat after 6 mo off oral contraceptives. I agree with you-I wish I had been better informed of the risk prior to taking them. Good luck with your surgery! Let us know how it goes.

Thanks for the concern and good wishes. Having a group like this to share experiences and information with is a great support and helps one feel less isolated in dealing with this problem. To answer your question, when I went in for my first liver resection it was considered an emergency procedure because I had a ruptured tumour. They went in and removed the hematoma and what was left of the tumour. They took only a couple of centimeters off my liver and fortunately I did not need a blood transfusion. The MRI did show other tumours, but at the time the doctors were focused only on dealing with the rupture. A post surgery MRI showed multiple adenomas on the right lobe that were fairly small, but one that was sizeable at 4.5 cm. Only 5 short months after my resection I was told that I would need another surgery to remove 1/2 my liver to remove the other adenomas as they had not regressed as hoped. This was the last thing I wanted to hear!

I decided to monitor the tumours until I could plan to do the surgery at a time that was more convenient for me (I am completing a Ph.D program and did not want to lose anymore time than I already had as a result of the last surgery). In other words I wanted to have a little control over my life! The pregancy was something that I didn't expect obviously and was a very sad complication. I am now planning the second surgery for late October. I have to teach in January and need to be recovered in time. I found with my last surgery, it took about 6 weeks to fully recover physically, but it took longer to recover mentally and be able to regain my capacity to carry on my academic work. I am also planning to bank my own blood prior to this surgery in the case of transfusion which is more likely this time around since the surgery is more extensive. My surgeon says that my liver should regenerate within a month and the recovery should otherwise be similar to the last time.

I'm not looking forward to going through this experience again, but I am blessed to have a lot of support from friends and family and so I see this as another challenge on life's pathway that has to be managed with patience. I wish everyone a healthy recovery and resolution to their liver problems.

Hello Group, I am a newbie and would really appreciate some information. I am 30 yrs old and was just that I too had something on my liver. The most probable were hyperplasia or adenoma. The size is 2.5cm. I would like to know what is considered big or small? My surgeon would like to do a liver biopsy with possibly of resection, depending on the diagnosis. I too am scared, but am optimistic that everything will work out. I would also like to inquire about me waiting till nov/dec to do surgery, due the convenice of family and jobs. I ask, because many of you seem to be in the wait and see mode. I too, may want to try this. I have had only one ct scan thus far. In addition, i would like to know about pregnancy after resection. I was in the process of trying to get pregnant when this was discovered. I would appreciate any and all information.

I am 36 & was diagnosed with hepatic adenomas(3 of them) in May. I used birth control pills for 9 years, not thinking I would be the rare 4 in 100,000 that would develop this. These were discovered by chance on an ultrasound I was having for lower back pain. I had not had any pain or symptoms as far as the liver was concerned. I went through an MRI, then was sent on to a GI for a biopsy. His discovery was that they were located extremely close to my aorta; therefore, allowing me to play the "waiting" game as they would not take the chance on a biopsy. Before his true diagnosis of adenomas, I was sent in for a mammogram with his thought that this might be breast cancer,and it making its final attack on my liver. An accurate determination could not be made that they were adenomas, so there were quite a bit of assumptions going on..What an exhausting month it was! I go in tomorrow morning for another ultrasound with high hopes that they have reduced in size; however, My side has been hurting for the first time for 4 days now. This is the first bit of pain I have had throughout all of this. I have been off the pill for 4 months..could there be a chance of reduction this early?

Greetings,

To respond to the last two previous posts, I have been pleased to hear of others on this list who have had their adenomas reduce after going off oral contraceptives. I have been off for one year and have had no reduction. Therefore I think it's hard to predict and a very individual circumstance.

Generally tumours approaching 5cm and above are considered large and these, from what I am told are not likely to regress completely. Smaller tumours can be monitored, but size is not always indicative of the possibility of rupture. I have been monitoring for one year since my last resection and have decided to go ahead and have them removed this fall. There is never a good time to schedule a major procedure like this but as long as the tumours have not ruptured, you have some ability to plan if and when you want to have a resection. For me, because I have already gone through having an adenoma spontaneously rupture, I have decided to take back the control and have the surgery on my own terms (and time frame).

Still I think being in a "wait and see" mode is a good strategy if your tumours are small in size, as you may be among the lucky ones who have notable regression in their size.

Best of luck to all.

hi there...In April I was diagnosed with a possible hepatic adenoma of FNH. After going off the pill (long term use) for almost 5 month we did antoher MRI. Again the results were inconclusive between the two and there was no reduction in size. I have been feeling fine and my blood work is ok. My doc is refering me to a surgeon who can do the resection laproscopically. Does anyone have any info, experience or input on the procedure? I really do not want to go through a full standard surgery. From all I have read, it is quite a huge incision.... laproscopically is more appealing. My tumor is almost 5cm and is located on the posterior part of the right lobe.
Thanks for your reply. :-)

oh another thought...my ob/gyn was very low key about the whole HA or FNH possibliliy. They said they see them all the time...that was news to me. I had called them and asked them if I should go off the pill and they told me to wait and see what the liver doc said. Of course, the first thing he had me do was go off the pill. I informed my ob/gyn that perhaps in the future they should do this for other women too. Has anyone had a similiar experience?

I am 45 yrs old and up until July 2003 I was on HRT Depo Estrodal due to a hysterectomy 13 yrs ago. No one ever mentioned liver tumours as a possibility. I had an incidental finding two weeks ago of a 4cm mass on the left lobe. The radiologist felt it was either a focal nodular h or a hepatic adenoma. I had the liver biopsy on 9/29/03. I have not met with the doctor since, but I have been told it is benign and is not a FNH. But they have not officially told me what it is. I am assuming we are looking at a hepatic adenoma. I don't have any severe pain but am constantly fatiqued, and previously drs diagnosed me with fibromyalgia. Probably wrong on that too! I have been reading all your messages. I am so sorry that many of you have struggled for solutions to this problem. It is amazing to me that this "side effect" has never been addressed when the drs write the prescription. Actually, it makes me very angry! I stopped the HRT on my own July 2003. I was concerned with the increased risk of breast cancer and emboli. I never imagined that it might cause liver tumours. I will continue to monitor the message board and will say a prayer for healing. I am scared too.

I have a question. Last year I had my gallbladder out and they dicovered tumors on my liver during the ultrasound. I have went for CT scans and hemangioma test which have determined that one of the lesions is a hemangioma but the other they are unsure. The one they are unsure of was 2.2cm and the hemangioma is 2cm. Since last year I have had a baby who is now 3 1/2 months old. I went in for another CT scan to check growth. My doctor old me that they grew about 1/2 of a cm. I've been off birth control for over a year. Does anyone know how long it takes for the tumors to shrink after pregnancy or stopping the pill? I hoping that they just grew during my pregnancy and are on their way down instead of growing. Another question- all my blood work was in normal range. Anyone else had that? Kind of scared. Going to a doctor at Northwestern (Chicago) next week. Are mine considered large? Thanks for some help!!! Adrienne

I was diagnosed with hepatic adenoma in July 2003. I had found a mass in my belly in late May, and there followed a series of tests: ultrasound, blood test, chest x-ray, CT scan, biopsy, MRI. The OB/GYN, Internist, and General Surgeon were all baffled. The biopsy results mentioned 'benign appearing liver tissue', so luckily I found a liver surgeon for a second opinion. I was diagnosed with hepatic adenoma. I had one large mass - the one that I felt - which measured 20cm x 11cm, and two others that measured 1.1cm x 2cm and 2.7cm by 1.3cm. These were all surgically removed along with about 500 g of liver. My surgery was done on July 14, and I spent 5 days in the hospital. I was back at work at week 6 (half time for 2 weeks), and am now back full time. Since the adenomas were so large, I had to have a laparatomy, and am now the proud bearer of a 10 inch scar which runs vertically down my belly. I tolerated the surgery well, and had a wonderful surgeon, and the nurses on the hospital floor were great!

In june of this year I was diagnos with Hepatic Adenoma.Thought it was gallstones , went for the first test ultrasound found stones but also by accendent found a large mass on the right lobe 7.7cm . Went for an CT scan about a month later found a 2nd one 5.3cm.Went for an MRI(2-3wks later) found #3,1.2cm . All this time that has past the Doc's told me to stop the Birthcontrol pill and they should shrink,in the meantime Im plaged with pain on the right side from a dull ache with pressure to Great Pain that will put me in bed , oh and that tired and weak winded feeling that can come on quit suddely.I find myself sleeping ALOT.Doc wanted to wait and see if they will shrink they do "sometimes"he said, and rupture is rare he says,I dont belive that anymore.5mo has past, went for a follow up MRI,Found 2 new ones. I have a total of 5 masses through out the liver.Doc had surgery date for Oct 9th. but cancelled on me because I would not concent to a blood-transfusion,I now have to go to PHX (good samaritan hospital)For a new Doc and the Surgery at the end of the month.PHX said they would care for me .

[This message has been edited by Penny A (edited 10-15-2003).]

Penny - I also had my surgery at Good Sam. Dr. Lawrence KOEP performed the surgery. His partner is Dr. Cashman, and I would recommend either on of them very highly! Also, the care I received at Good Sam was excellent. Good luck.

Hi. I had a liver resection last year to remove two oestrogen related tumours which had ruptured. One was 12x12cm the other 4x4cm. I had 3/4 of my liver removed and 13 months on my liver has completely regrown and I am healthy. I would like to know what birth control pill you were all on, and if anyone has got pregnant after having the tumours removed. All the info says avoid subsequent pregnancy..is this only when you have currently got adenomas? Are you safe to conceive after they have been removed? Email lynne@brws.fsnet.co.uk Thanks!PS I have endometriosis too which I read is an oestrogen sensitive disease. Do any of you have this and previous adenomas?

I found out two years ago that I had a hepatic adenoma. They took me off birth control, and then a year later, I found out I was pregnant. I have had my baby, and everything went well. I went for a follow up, and my doctor did a sonogram, and said that it is still there. Two years ago, it was 3 cm, and now I have an MRI Friday. I guess I would just like some input on surgery and experiences. Thanks.

I am SO glad to have found this board! I have NON-hormone or birth control related hepatic adenomas throughout my liver, which were discovered in 94' during an unrelated CT scan. I did have exploratory liver surgery as an infant for an enlarged liver and a fever(found nothing), but they now believe I must've had a blocked portal vein. Mine is much smaller than normal, and I have many other veins near it which developed to maintain the blood flow (the med report calls these collaterals a spontaneous shunt). I was hospitalized at age 4 and 6 for esophogeal bleeding, which they now realize was probably caused by portal hypertension.

A year after the 94' scan, I was hospitalized with severe pain (bled into a lesion). Have had several episodes since. and a resection for a bad one in 99' by a major NY transplant surgeon (the new liver tissue is clear of adenomas), who I adore, but he decided to take a GOOD look at my liver while in there and gave me the full mercedes-logo incision. Not pretty, but who the heck cares? I've had 2 small bleeds since, unfortunately, but I've recovered well each time.

I've recently seen a different doctor (tumor specialist )for a consultation, who wants to do some heavy research on my case. Says he think I may still have portal hypertension, also. He may propose embolization, but I really don't know if I want to do any more procedures when on the whole, day to day, I'm just a normal healthy gal. I just wonder as I get older if I may become more suceptible....

Hello - I have hepatic adenomas as well. I was just released from the hospital recently. I am very curious to find out the course of treatment.
I also have an adenoma and a cyst of 15 cm. Most of the doctors told me to leave it alone because it is abenign cyst. The las doctor told me i need surgery and period. I read on the internet that adenoma is abenign cyst and that there is not any danger to leave it alone. We need to chek them out yes. I do not what to do. If you visit a gastroenterologist he tells you do not touch it if visit a surgeon he says have surgery. It is a mayor surgery and my life could be at risk why do I need to go to surgery then. What do you think. connieic@hotmail.com

I am SO glad to have found this board! I have NON-hormone or birth control related hepatic adenomas throughout my liver, which were discovered in 94' during an unrelated CT scan. I did have exploratory liver surgery as an infant for an enlarged liver and a fever(found nothing), but they now believe I must've had a blocked portal vein. Mine is much smaller than normal, and I have many other veins near it which developed to maintain the blood flow (the med report calls these collaterals a spontaneous shunt). I was hospitalized at age 4 and 6 for esophogeal bleeding, which they now realize was probably caused by portal hypertension.

A year after the 94' scan, I was hospitalized with severe pain (bled into a lesion). Have had several episodes since. and a resection for a bad one in 99' by a major NY transplant surgeon (the new liver tissue is clear of adenomas), who I adore, but he decided to take a GOOD look at my liver while in there and gave me the full mercedes-logo incision. Not pretty, but who the heck cares? I've had 2 small bleeds since, unfortunately, but I've recovered well each time.

I've recently seen a different doctor (tumor specialist )for a consultation, who wants to do some heavy research on my case. Says he think I may still have portal hypertension, also. He may propose embolization, but I really don't know if I want to do any more procedures when on the whole, day to day, I'm just a normal healthy gal. I just wonder as I get older if I may become more suceptible....

Your story sounds familiar - I also have been diagnosed with benign adenomas(currently have 14 of them). They were found in 1997 during a sonogram for pain in lower left quadrant - ovarian cyst - not sure how they were looking the the liver area. They said there were 5 lesions which since have been called adenomas. I've done the entire test route - sonogram, CT, Liver Scan, MRI's and 2 biopsies. Have gotten scanned every 6 mos. with numbers gradually increasing from 5 to 14. Went to see surgeon at Strong Memorial in Rochester NY in May 03 - he says there are too many and they are all over the liver, so he is not sure resecting would prove beneficial. So - here I am - going for another 6 month CT scan and the normal wait to find out the results. Does anyone know anything about the breast cancer drug tamoxifen being used for liver adenomas? How about vitamin E therapy? Would appreciate any info you have.

Nice to be able to read about someone with similiar issues.

DLewis, did you get any feedback regarding embolization? I went to see a liver "tumor" specialist who is recommending that for me. I have multiple adenomas throughout my liver (they think since infancy, not hormone related), and he wants to try it on a few of them.

Hi wgeer

Never heard of either of those treatments for adenomas. Was the vit E therapy recommended by an MD or a holistic health person? I'd be very wary of taking anything in the way of herbal, vitamin, or holistic treatment for a liver condition.

Do they have any idea why the numbers of adenomas have increased? Never heard of that other than with people on hormone therapy.

I have now been diagnosed with an adenoma on my liver as well. It was found after I had acute pain on my right side 4 weeks after the birth of my second child ( I am 38 years old). They did emobilize the blood supply to this through an angiogram and I was out of the hospital in 5 days. The specialist was to do surgery within 8 weeks of this but is now waiting for another three months and will do a repeat CT scan. The size was 9.9 cm and has reduced to about 6cm. The specialist does not believe it will shrink much more. He is concerned of another rupture and did note it should come out due to the possibility of it becoming cancerous in the future. I would like to get this over with at this time but would like some response on how recovery from surgery went and any other possible treatment. He will need to remove 2/3 of the liver but indicates that I will fully recover. Waiting in Canada........thanks

I have now been diagnosed with an adenoma on my liver as well. It was found after I had acute pain on my right side 4 weeks after the birth of my second child ( I am 38 years old). They did emobilize the blood supply to this through an angiogram and I was out of the hospital in 5 days. The specialist was to do surgery within 8 weeks of this but is now waiting for another three months and will do a repeat CT scan. The size was 9.9 cm and has reduced to about 6cm. The specialist does not believe it will shrink much more. He is concerned of another rupture and did note it should come out due to the possibility of it becoming cancerous in the future. I would like to get this over with at this time but would like some response on how recovery from surgery went and any other possible treatment. He will need to remove 2/3 of the liver but indicates that I will fully recover. Waiting in Canada........thanks

Hi Everyone- I am also in the process of contemplating liver surgery. I am 32 yrs old and have lived with an adenoma for the last 10 years. When discovered I had only been on birth control pills for 4 years, and the tumor was 4.0 cm. Currently today it is 7.2 cm due to one pregnancy. Unfortunately, mine never decreased after stopping the pills or after my pregnancy and I have had it monitored yearly. Now they say it is growing for some reason and is currently 7.2. I feel so much better reading these posts where some of you have gone through liver surgery and seem to have made it out OK. It scares me to death just the thought of it, but I would rather have a planned surgery than an emergent one. I had my hopes up because I thought it could be done laparoscopically, but then found out just today that laparoscopic was not an option. Any other info on surgery would be greatly appreciated. Has anyone gotten pregnant after having liver resection or read any information on this? Thanks.

I am so glad to have found this site. June 2004, after having a gallbladder attack, I was diagnosed with 5.1cm tumor on my liver. The specialist that I have been seeing believes that it may have been there for nearly 10 years. During that time I have had three children. The last two pregnancies caused great pain on my right side and I had to leave work at my 30th week. My ob/gyn thought nothing of it. Surgery is my biggest fear, so it is good to hear from people that have gone through it. The adenoma is now 5.7cm and my dr has taken the wait and see method until July. By reading some of the stories here I am not so worried about what will happen.
Thanks

tlcanada

Read some of the post on the focal nodular hyperplasia thread. Dana99 and SilverB along with all the others have really helped me out in comparing notes with me. We all have a tumor that may be and adenoma or fnh. I totally understand your fear of waiting until July.

Fannylou

undefinedso far the options I'v heard are 1. stop ocp's and wait for shrinkage
2. "shave" the tumor with a laser type treatment (not recomended near blood flow, the blood carries the heat away from treatment area so it isn't as effective. The heat can also cause blood clots.) This kills the tissue, but it is still in place.
3. remove tumor
I'm going in to hospital on Nov 13th for removal, hopefully a resection, although they told me I could lose 1/2 to 2/3 of the liver.
what treatment options were you given? apparently there's no drugs or radiation types for this.

Regarding #2 "shave" the tumor...and blood clots...is this common?

I have recently been going back and forth with CT-Scans, MRI's b/c they found a 2cm mass on the right lobe of my liver. I have had severe abdominal pains(comes and goes)for about two years...that is why they did a CT Scan, then found the mass and began MRI's and more CT Scans. This has been going on since Feb. I have seen a really good liver specialist who sent me to a liver surgeon at Vanderbilt Medical in TN. He is now going to do a series of very detailed CT Scans and he mentioned the three types of masses(hemangioma, adenoma, and I forgot the last one). Anyway, he said if it turns out to be one of the three(other than the hemangioma) he wanted to go in and "burn" it, instead of removing it. I wonder if that is what you are talking about in #2. I am 33 and my husband and I are wanting to try to get pregnant...but want to resolve this first. Sorry, this is so long...blood clots just really scare me b/c my mom had one at 52 from surgery and is no paralyzed.

CCR- I have never heard of this "shave" method. Is this something new. You are right they do have to be very careful of your veins and arteries and where they are located in reference to your mass. A 2 cm mass is still very small and most doctors prefer to just leave them alone at this stage. It is surprising though that it is also causing you pain with this small size. Do you take any Ibuprofen or aspirin containing products for headaches, etc? If so, you need to stop and just take Tylenol or Acetaminophen products, as I was told when mine adenoma was diagnosed, that Ibuprofen can cause the adenoma to bleed which may cause pain. If it is an adenoma though, speaking from experience, if you get pregnant it will more than likely grow. What about laparoscopic surgery with yours being so small? Has this been brought up as an option? Just get different opinions on this. I would not try this "shave method" just yet.

When you talk about "shaving" the tumor is that what they call the RFA procedure? Thats where they go in and basically cook it. I am having that done on the 14th of July. I have already had 4 adenomas removed (2 different resection surgeries). And I had a baby after my first resection and after they found 2 more growths that they removed after she was born and all went fine my ob/gyn had me of off work my entire pregnancy to be safe but it was fine and I have a beautifull 4yr old daughter ( I also have 2 teenagers)so don't give up on a baby its still possible to have 1, I did.

I have just been dx w/ HA, and it is 10cm in diam. I got brinchitus (sp?) during my last trimester of my 3rd pg when it was found. I just found out what it is today. I also found that I will have surgery to remove it.
I was just wondering what kind of recovery time you all had, if you breastfed, how soon you could return to it. My son it only 3 mo old and I am not ready to give ti up yet.
Please let me know anything you can to help me cope w/ this news. I still don't have any dates or anything from a surgon yet, so all I have is the internet.
TYIA
Krystin:wave:

Hi everyone,

I'm so glad that I found this site. I had a gallstone attack last year and during the ultrasound, some cysts were found in my abdomen (surgically removed last Christmas along with the gallbladder) and the first indications of lesions on my liver were detected. We waited 8 months to do some follow-up tests and most recently (August 2006) we've found out that the first lesion (on segment 2) is about 2 cm and the second (on segment 5) is about 2.3 cm. That's larger than they were in December 2005. I've been on the Pill for almost 10 years on and off for medical reasons.

After two CTs, two MRIs and a nuclear scan, FNH has been pretty much ruled out but nothing is certain re: the diagnosis. This is so frustrating! :mad:

I'm finally going to see a hepatologist in November 2006 and will probably have a biopsy scheduled. I don't want the surgeons to lose their chance to do laproscopic surgery, which I understand could happen if the lesions get too big.

I'm sure the hepatologist will take me off the Pill right away, but I'm on it for medical reasons (I also have polycystic ovarian syndrome, which pretty much stops me from having a period unless it's induced by BCP). This is why I think they're just going to go ahead and do a resection. But again, we don't have a diagnosis yet.

This is really bad timing because I'm getting married in May 2007 and we just bought a new house...but that's okay, we just have to roll with the punches! :jester:

It's nice to know that somehow, the 4 in every 100,000 people who get these types of things have found each other on this board. Let's keep supporting each other. Looking forward to your messages!

Welcome to the board Catseyes. It is nice to meet up here with that small percentage of people with these types of issues. I recently had a liver resection in July 06. They took 60% of my liver and my gallbladder, full open surgery of course. I had 2 FNH's (5cm and 4cm). They had originally thought ademnom, but found out differently once they were in there. Recovery was rough, but I was back to work full time in 10 weeks. It could have been worse. I know there are others here on the board with great advice (fannylou) to be one. And maybe you don't need advice, but if you have any questions, let me know....having just had the surgery, everything is still pretty fresh in my mind. :)

I too have PCOS, and all the pill does is cover up symptoms, you need to be seen about that by someone who KNOWS!!! it really p!$$es me off when doc's don't take the time to think about other treatment options!!!:mad:
Glucophage is a good one to start thinking about.
Good luck.
I see my liver surgon on tuesday to set my surgery to have it taken out. (again, mine is over 10cm's, found during pg #3 --so you can have babies, should you choose, w/PCOS)

Question for you Coreday, how were you feeling after surgery? I see 10 wks full recovery? Is that right? I am a SAHM and looking to know how long before i am "up and running" so to speak...How did you feel? how long were you hospitalized? I am suffering a bit from depression (in waves) about this thing, I just want it over with.. I am so freaking nervous!!:(
Thanks

Hi KrystinR! I had surgery on July7th to remove my hepatic adenoma (which actually turned out to be an FNH) and with it 60% of my liver and gallbladder. Once inside, they found more damage to veins and arteries than they had anticipated. Four hour surgery turned into a 10 hour surgery. They even stopped part way through to test the tumor and make sure it was not malignant. Anyways, I felt pretty beat up afterwards. The hardest part was trying to get out of bed and stand up. My muscles were mush and the incision hurt. The pain got better as the days went by...by day 6, I still hurt but it was bearable. After that the hardest part was getting my stamina back. I was really tired, could barely walk to the nurses station and back or even to the restroom for that matter. I was released after 10 days in the hospital. I was hurting (but they sent me home with good meds) and had absolutely NO energy and was having trouble catching my breath (but I have asthma and they found out later I also had a partially collapsed lung)...but I tried to do things...make myself something to eat, try to walk around my apartment building...etc. Showering was tiring...my dad put a bench and a hand held showerhead to make it easier...it was just so tiring standing trying to wash my hair, shave, etc. Its was 10 weeks until I went back to work. It was fine...I could have probably gone back in 8 weeks. I know you have kids and are looking to see when you will be ready to go. I can't give you an answer (as I think our cases are different) but I would say, don't push it. It is a hard, but do-able surgery. Let yourself rest and you will be better before you know it. I am so glad I had the surgery. No more worries, is it growing, is it shriking, no more CT scans etc. I had the depression thing going to before the surgery, but it is gone now...such a relief to have it hanging over my head anymore.

If they found another tumor and wanted to take it out, I would do it. That is how good I feel about it now. It was hard but the benefits outweigh it. Do you have a good doctor/surgeon to do this? I live in CA and had a GREAT surgeon. I hope this helps. :) Let me know if you have any other questions....I would be glad to answer.

I would like to jump in with a couple of questions.I have posted about my acid reflux and gallbadder issues but after reading here,I am very curious.Over a year ago I started having pain in my right side and problems with heartburn and reflux.After trying different meds throughout the year and having ultrasounds to rule out gallstones my gi sent me for a hida scan on gallbladder.Ended up that gallbladder ef was 29%.Gi didnt think it would warrant surgery said to keep on meds.A few months ago went to a new primary doc and she said she thought i needed my gallbladder out and wanted me to have a ct scan to rule out stones.Anyway the results were that gallbladder looked o.k. but in an incidental finding they found a cyst on my liver and a kidney stone in my right kidney.I questioned her about the cyst and she more or less saod it was nothing and that if she took 100 people off the street 25 of them would have one.So I just let it go.I havent had surgery on my gallbladder and I have been trying some natural ways to help with the reflux.Question is, is a cyst the same as some of you write about?Should I be more concerned about it?My bloodwork came back fine on my liver function.Sorry so long winded.I would appreciate any feedback. Heather

I am new to the board but have been dealing with what I have been told is an FNH and it's 8.3 cm x 6.8 cm. It's been anything but easy to get to this point. I have now been scheduled to have a resection on the 20th of this month. I have read many of your stories and can't tell you what a help you have been. I have at points thought I was just losing my mind but after reading your stories I believe that I may have others that would understand the issues I have been going thru. It's been a tough decision to have the surgery but now all (doctors, family and myself) have conculded that the pain has gotten to a point of no return. I have had many other surgeries to this point in my life and am hopeful that this one will not keep me down as long as some are saying it will. From those of you that have had this surgery can you give me an est. of how long it takes to really be back to work and to feel normal. D

Figgy...keeping in mind that my surgery was more complicated than they had anticipated, I developed an infection, and that this was my first surgery EVER....I would have been ready to go back to work in 8 weeks...but because I still had the drain, they kept me out for 10.

My surgery was July 7th. I feel pretty normal now...3 months out...but I still do have some little things happening...I still get tired easily (at work I am pretty much beat by about 3:00), I find myself doing things (ie sweeping) becasue I feel okay, but end up hurting later. I have to remember to rest and take it easy becasue I am not entirely healed yet. My doctors said to give it a good year to feel perfect again (but of course, they might be exagerrating it just to be safe).

But nothing is better than knowing that it is gone and I don't have to worry about it again (other than periodic scans).

I am so sorry to hear about that... my grandpa died of liver cancer about a year ago... it was very tramatic and in the same essence not very many treatment options were offered. first of all because of his age and second because of the advanced aggressiveness of the tumor. but i have a question... im on oral contraceptive, what are my chances of getting this same condition... how did you know you got it and what kind of contraceptive were you on??? i have so many questions... i have had quite a few problems with my ovaries and contraceptive pills are the only way to regulate it but my question is am i putting myself at more risk by taking these pills than good??? i dont mean to bombard you with questions you might not be able to answer but i didnt know that this could be a possibilitiy? what can i do?
thanks,
Leslie

have some questions is anyone still here ??, I have two suspected adenomas 3.6cm and 2.1cm, we were just about to try for child #2 when they were discouvered by chance. Both are in the left lobe, would be willing to under go left lobectomy if it would mean a safer pregnancy, help anyone .... I live in a small town and am not finding much info.
thanks trish 33yrs british columbia

I'm new to posting messages on the web. I've asked this question elsewhere on this board, but I'm afraid my message may be burried as a response to an old message so I'd like to ask it again here.

I'm hoping to find out if anyone has 5 cm adenoma that's being watched by their doctor rather than removed. If so, is your doctor a gastroenterologist? Are you and your doctor comfortable with this as a long-term approach? My gastroenterologist is sending me to a university hospital for possible resection. I'm concerned that the specialists there, liver surgeons, are going to be quick to recommend surgery. I'd like to be sure that monitoring isn't a reasonable strategy.

My adenoma hasn't grown since it was detected a year and a half ago. I've had a biopsy that indicates it's benign. Also, I'm about to go through menopause so I wonder if it's less likely to grow or even rupture.

Any comments will be greatly appreciated. Thanks for your posts.

I'm new to posting messages on the web. I've asked this question elsewhere on this board, but I'm afraid my message may be burried as a response to an old message so I'd like to ask it again here.

I'm hoping to find out if anyone has 5 cm adenoma that's being watched by their doctor rather than removed. If so, is your doctor a gastroenterologist? Are you and your doctor comfortable with this as a long-term approach? My gastroenterologist is sending me to a university hospital for possible resection. I'm concerned that the specialists there, liver surgeons, are going to be quick to recommend surgery. I'd like to be sure that monitoring isn't a reasonable strategy.

My adenoma hasn't grown since it was detected a year and a half ago. I've had a biopsy that indicates it's benign. Also, I'm about to go through menopause so I wonder if it's less likely to grow or even rupture.

Any comments will be greatly appreciated. Thanks for your posts.

Hello again,

I just answered you on another post, but I would like to add that getting another opionion from a Hepatologist (liver doc) would be the route I would go. They deal with this stuff all day long and are up-to-date with new procedures and what-nots.

What about your blood test? Are they showing that your liver is function correctly? Did this come back as Adenoma for sure? Adenoma's can turn into cancer &/or rupture ( I believe). Forget the supplements when you go through the change unless you are watched very, very closely.

Good luck! Zetah

Hi,

Welcome. Thanks for your reply. There is another section of the Health Boards (if you search HealthBoards.com for "liver adenomas or focal nodule hyperplasia" you'll get to it) which is much more current and active. You might want to post future communications on this topic there.

Aud,

Please let us know how your resection went and how you're doing now. Well, I hope. Any information you can provide about the process and/or your feelings will be so helpful to many others. Glad to hear you feel positive about your decision. Again, I suggest you post to the active thread. Hope to hear more from you.

i have 4 adenoma's and i am being watched. mri with gad annually, if they grow or cause me pain then i would do something. there are so many risks with surgery- it truly is a last resort.

search dr. richard schulick at hopkins he is an awesome surgeon, also you can have full blood work- cbc with diff. cbp, and afp tumor marker screening.

follow your heart, if you talk to a surgeon remember they are surgeons and they do surgery...

keep me posted.

usually 12-16 weeks to get back on your feet.

can they do ablation therapy?

Hi redcdg,

I just posted a message to "hepatic adenoma or focal nodular hyperplasia" which seems to be a more active thread. I've learned I have a FNH and not an adenoma after a nuclear scan at Georgetown. I was interested to hear that you've seen Dr. Schulick at Hopkins and that you like him. I was thinking about getting a second opinion on surgery from him. Hopefully, I won't need to talk to him, but if I do, it's nice to know you thought highly of him. Good luck with the monitoring.

you can live with FNH, you do not need to resect unless you are having symptoms......

I was told in April that my adenomas would shrink once I stopped OC. On July 5th I collapsed from the worst pain I've ever experienced (even childbirth) when we were out of state. Adenomas (5)are now very large, (3 over 7 cm) and hemorraging. I'm scheduled for surgery in the next two weeks. I'm very angry at first doctors who basically shushed my questions. Now I'm told that if they had acted earlier they might have done this laproscopically. Now I'm facing loss of 60% of my liver, a huge surgery and recovery time and I am very very angry. Thanks for letting me vent.

Hi Sandriciad,

Sorry to hear about the complications from your adenomas. I'll be thinking about you as you prepare for surgery. It would be great to hear from you afterwards and know that you're recovering well. If I remember correctly from my readings, it's not likely that a 7 cm adenoma could be removed laparoscopically. Also, removal of sixty percent of the liver doesn't seem to be uncommon in the case of adenomas. A surgeon told me that often the removal of more liver is safer than an attempt to remove less. I have only one 5 cm lesion which has lately been diagnosed as probably a FNH, but should it need to be removed, could require surgery extensive as yours. Hang in there. Read through the postings here and know that you're not alone.

Thanks dlynnel. I'm just really frustrated. Not even scared anymore, I'm to busy to really think about it now, trying to get the next 4 months (I own my own music school, and trying to plan ahead) squared away so I can actually take the time off to recup. My surgery date isn't even definate yet, it's tentatively scheduled. I plan on teaching untl the 15th of the month. I will be really upset if they postpone this surgery again, I want these things out of me!

Hi! :wave: My name is Domenica, I’m 23 from NJ.

I too was just diagnosed with Hepatic Adenoma (Focal Nodular Hyperplasia) which is 7cm. How they found out: I went to my primarily doctor complaining of bad cramps he sent for a CT to rule out a cyst on my ovaries. I went and had the CT, I had a check up appointment with my OBGYN who was the one to break the news to me. And probably since I have been on the pill since I was 13 the tumor was a side effect from OC. I had never heard any thing like this before, I was in complete shock! The only symptoms I have been having are being nausea all the time and getting really bad headaches. I went for a few additional tests such as a MRI, a liver panel and a full blood work up. I am still awaiting the results of my blood work. The radiologist that read the MRI recommends another MRI in six months, but I am concerned of it rupturing and also this isn’t something I was born with so shouldn’t it just me removed? I have two appointments coming up in the 2 ½ weeks with Liver Surgeons. I am curious to find out more information if any one has had a resection, how long was recovery, and any additional information would help. Any information regarding sizes, and who is still waiting to find out about surgery. Pretty much any information would help!! Thanks!! :confused:

HI all. I am 3 weeks postop. 5 bleeding adenomas were removed ranging in size from 5 - 8 cm each. They removed 61% of my liver. I can honestly say that the post op pain was NEVER as bad as the pain which originally brought me to seek medical care. Since 2 major veins were also removed, my body did have some stress in learning how to repump all my blood/fluids, but I'm finally seeing my own legs again (I felt like a sausage from the waist down) I was discharged 6 days earlier than planned from hospital, and I think i'm healing better at home. I did have to go back in 4 days after discharge to have part of the incision reopened, and felt that I was setback for a few days. I am able to walk a block now, eat small meals, and did a flight of stairs today with some help. I actually plan on returning to my studio to start private lessons again in 10 days. I can teach from a chair. I am tired, and I did have horrible back pain for the first 12 days, but am feeling much better now. I thank heaven that I went for that second opinion..........as the first opinions idea of see you in 3 months i'm sure they will shrink was wrong. I advise everyone to be on top of their medical care, you are your best advocate! I don't check the board much, but would love to give encouragement to others that are anticipating this surgery. Sandie

I had this surgery, and I want you to know I was with less pain post op than before. 61 percent of liver removed, including two main veins. But please please please get 2nd op.

Hi there...I've posted on another section of the board, so this may be a repeat post for some of you.

My hepatic adenoma was diagnosed after I went to the ER with severe pain in my right abdomen and shoulder back in May 07. The CT and Ultrasound showed internal bleeding, which at first the md's thought was a freak accident that happened while I was running with the dog. Follow-up tests in July 07 showed that the hematoma was gone, but that's when they were able to see the adenoma on the CT. I had another CT in early Aug 07, and have since been referred up to UC San Francisco to see a specialist and get a second opinion. My internist says that surgery is the only way to treat these, and that there's no way I can go back on oral contraceptives (I had been on them for about 20 years). It's a 4-6 week wait for an appointment at UCSF, but in the meantime, one of the physician's up there reviewed my CT and US tests and said there are several adenomas, but one large one(5cm) on my lower right lobe. I don't feel any pain, except when I exercise, so that has really affected how I workout now (pretty much just walking).

So, while I'm waiting for the next step in this process, my questions are:

1) Does anyone have any weight issues related to this? I know that weight loss is a bad sign, but my weight has stayed the same. I watch what I eat, don't drink a lot of alcohol (mostly just a glass of wine with dinner), and have always exercised. I just can't seem to lose any weight, no matter how hard I try (and I am trying...keeping track of intake, etc.).

2) I'm 41 and have not had any children (I haven't tried, I just haven't found the right guy yet!). Does this mean I pretty much have to accept the fact that pregnancy is not (should not) going to happen for me?

3) What are the contraceptive alternatives now that I can't be on the pill anymore?

4) Any suggestions on how to handle the pms symptoms (cramps, emotional) now that I'm not on the pill anymore?

These boards have been a big help so far in knowing what to expect from the surgery, as well as what others have gone through for their diagnosis. I just hope to get rid of these so that they don't rupture again, and so that I don't have to go through so many tests in a short amount of time (I do not like drinking the barium sulfate, nor the feeling of the dye injection that is used for CT's). My friends tell me that I seem very calm and matter-of-fact about the surgery, and don't sound like I'm afraid at all. I guess it's because of people like you who are on this board, sharing your experiences and letting us know what to expect. Thank you so much for all of your help!

Linda:cool:

Hi LindaG40,

We meet again. I can address from my experience your 4 questions.

1) I too could not loose weight (for about 2 years) no matter how hard I tried. In fact, I was putting it on at an alarming rate, once 5 pounds in one week. Since 1 of my growths was next to my main bile duct when it got big enough it started acting like gallstones and that was when I got sick every time I ate and I started loosing weight. But, I think that having these in the liver affects the metabolism rates overall (but no Dr. will agree to that) and after I had surgury I am back to the same weight I was for the majority of my life. It almost melted off. I can eat anything I want and my weight has held the same for 3 monts now. In 2 years I put on 30 pounds, in the 9 months I was sick and had surgury/recovery I dropped 35. 15 in the 5 months leading to surgury, 10 the week in the hospital, 10 the month after.

2) I am a few months shy of 40 and no kids, married for 8 years. 2 weeks before the onset of symptoms we started talking of family. It's on hold indefinitely. My OB says kids at 40 or later are realistic, we just need to be open and honest about the level of risk and what we want to test for in terms of genetic problems and are we willing to terminate a pregnancy before going into one? Hard choices to make before being confronted.

3) My only choices are a COPPER IUD (not the new drug coated ones) but my body wouldn't accept it, condoms, and a diaphragm. Of course abstinance but that wouldn't make my husband happy. ;)

4) I don't know about menopause - not there yet. But, the first place I am going to look for advice is a natural health resource. We've been following quite a bit of his advice for several years but are not fanatics by any means. It just make good sense.


Don't you get drinks flavored like orange creamscicles? Mine have even been done up like slushies. Very cool. The first time I had a CT with IV contrast they didn't warn me that you got the warm pee the pants feeling and I flipped. I was mortified and wouldn't get off the bed or let them take the covers. I knew better after that and had some great jokes with the techs.

A note to all, what Sandriciad says about being your own health advocate is all too true. If you are in the hospital and a pain med isn't working TELL SOMEONE!! And tell someone else if you don't get a satisfactory response. Have a friend or family member take notes about what is happening and comments that are made during room visits by doctors and nurses. When you are told things are OK Tuesday morning and then Wednesday afternoon things change you have a record of it and can ask intelligent questions! You are protecting yourself, the most important person.

Tabatha

Hello Tabatha!
I'm happy to see you responded to my post. I need to clarify one thing, I am not experiencing menopause symptoms yet (or, I don't want to think that I am), but since I went off the pill due to the injury, the PMS seems to have been quite noticeable. I've been more emotional, anxiety, and had extreme cravings just before my period. I've also experienced cramps, and a longer period. It's like I'm 12 all over again! I agree with you on looking into a more holistic treatment, and I'm thinking about acupuncture, so I'll post what the outcome of that one is.

I agree with you on the weight issue. Since liver function has an effect on metabolism, wouldn't that include weight? I had a year of unemployment, during which I worked out hard at the gym 5 days a week for 2 hours each time. I watched what I ate, got enough sleep, yet I did not lose any weight.

Now that I have this diagnosis, I am more in tune to my body and what may possibly be related to my liver issues. I am still waiting for an appointment with the specialists at UCSF, which has been a little frustrating. I just returned from a sales meeting in Mexico, and I was worried about having another rupture while there. My internist said I would be o.k. to travel and to not do anything crazy. He even said it would be o.k. for me to have a couple of drinks, but not to go overboard. I did get sick one day, possibly from a very rich dinner that included surf & turf. What concerned me is that another person ate the same meal, did have some "bowel" issues as well, but I also felt like I had the flu. I know that I may be more sensitive to what's going on with my body, but these things are now of more concern to me.

Hopefully I will get to see the specialists soon so that I can move forward on the next steps in taking care of my liver, and my health. If anyone has a list of recommended questions to ask, please be sure to post them.

Thanks!:cool:

Hi there,

I'm so happy I found all of you. I was diagnosed with a possible 1.4cm x 1.7cm hepatic adenoma or FNH in August 06 by my GI (who is also a good friend) I had severe pain in the middle right side of my torso under my ribs. I knew it wasn't my gallbladder since it was removed 6 years ago. I've had an MRI and 3 ct scans all 6 months apart. Todate, no change in the size. I still have occasional pain which is usually brought on when I'm under severe stress (my dad has cancer and now I run the family business). I've also gained 10 lbs in 1 year and I follow a strick exercise routine. Both my GI and OBGYN are convinced that 17 years of oral contraceptives have caused my problem. They both also feel that I should take the wait and see attitude for any changes. My GI does not recommend a biopsy but he does schedule a ct-scan every 6 months. I'm very nervous about the situation. I would like to get a 2nd opinion by a specialist but I'm not sure what kind of doctor to consult. Can anyone give me some guidence? Any advise would be helpful. Thanks - Mar

You asked about what type of doctor you need to be seeing? I would think that would be a hepatologist. I started off with my PCP who sent me to a Gastroenterologist who then sent me on to a Hepatologist (a liver specialist)

;)

I have what they think is an FNH. It is regularly monitored as well> My DR. also recommended wait and see approach, no biopsy. However, my Dr. recommended an ultrasound for monitoring because of all the radiation from CT's. I agree with that. After monitoring for a year with ultrasounds I am now just monitored with annual ultrasound. Good luck!

Thanks for your reply. Do you get any pain in the area? I have a hard time forgetting its there due to the pain. I haven't yet pinpointed anything that triggers the discomfort but I think stress is highly related. I have an appointment to see a specialist at the Univ. of Miami liver disease dept. on 10-12-07. I'm hoping he'll give me peace of mind. I'll post any new info that I get from him.

Hi,
Yes I did have pain on my right side, nausea too. That is why I initially sought help. It seems to be a frequent complaint of others on this board as well, although Drs. seem to say it has nothing to do with the liver problems....I don't know if I quite believe that. Mine comes and goes. Others seem to have it more consistently.
Goodluck at your appt and let us know how it goes.

Hi everyone,

Gmmjn5 - my surgeon said that my naseau would likely go away after surgery and it did. When I asked him why that happened he said he didn't know what the link was really, it just happens. To me, the liver is full of bile ducts and if thier production is messed up (as is the case in a bad gallbladder) you get sick to your stomach. He at least admitted there was some type of link, just didn't know what it was.

Keep pressing the fact that you are uncomfortable. Only you can decide what you can deal with for a quality of life. There are differences in FNH and HA, the big ones are risk of rupture as it gets larger and the slight risk (10-15%) of HA turning to cancer. The risk of rupture is why they hesitate to do biopsy. My GI was very ho-hum about every thing once it was determined I didn't have cancer and didn't need a transplant but that didn't solve my situation. I was still in pain (it wasn't excruciating but it wasn't there before) and I was still unable to eat. So I pushed back until I had hard answers. He also misdiagnosed me with 2 growths when I had 4.

I put on 30 pounds in 2 years and couldn't figure out why. My Dr finally said you're over 35, it happens. But I didn't feel right. I can't explain it, but I knew something wasn't right. Once I got sick 10 months ago and then had surgery I dropped 35 pounds in 8 months. I don't buy that after being on the pill for years it suddenly is the cause of weight gain now. As I said in my earlier post, the liver contributes a lot to metabolizm. If something in it is messed up who know how it affects other things even if all the 'tests' come back normal.

There is another board further down also labled 'hepatic adenoma' with more posts you may want to glance at before you go to the Dr. It might give you some ideas about questions to ask.

Good Morning Everyone!

I have a total of 5 FNH's right now ranging from 2 to 3 cm each. Two years ago I had a resection to remove one that was the size of a football. I was a lot bigger than they expected. I felt better for a long time but started having the same symptoms about 8 months ago with the nausea and pain. I have 4 new tumors since my resection. Nothing is being done at this time other than monitoring. I cannot get my PCP to understand that I am in pain and my surgeon only checks me once per year. Who should I turn to? I am at my wits ends. I don't want surgery again! It was horrible but I don't know what to do.

Suggestions Please!
Fannylou

HI Fannylou,

I am so sorry to hear you are having so many problems...you poor thing, it seems to be one thing after another!! Can't you be referred to a liver specialist of sorts. I think I see a gastroenterologist...all I know is it is not my PCP, she referred me out. Are you a candidate for RFA or cyberknife, atleast these are not invasive. I think Dr's tend to trivialize the pain and nausea and will even say it's not related, yet many come on the board with the same complaints......

I think that would be my best bet. I was in Emory for 9 days after my surgery and it was horrible. I don't think after the past three years I could do it again. It has taken a lot out of me. I also had to have my uterus removed last november due to large fibroid and then my ovaries two months later due to a large tumor on the right ovary. All of these things can't be unrelated. I am using an estrogen patch for the hormone replacement. My GYN of course wouldn't do the liver thing. My Liver Transplant Dr. only checks for growth and blood work. He didn't refer me to a hepatologist just said to keep coming to him. I think b/c he expects another surgery. And my PCP doesn't want to do the pain management b/c he has heard that they don't hurt and doesn't want the responsiblity. So where do you go to after all of that. No one want to do anything. I hate going to Doctors b/c I feel like I am trying to convince them that my symptoms are real. I hurt for 10 years and went through 3 PCP until one of them found the tumor. Then he moved his practice two weeks before I had the surgery. What luck huh!

Hi everyone. I have shared some of my experiences through onset, surgery and followup on this thread and another one labled the same father down. I thought I'd come back and share some good news, which seems to be lacking everywhere.

I had a CT this week, 6 months post surgical. I am happy to say that all 4 adenomas have been completely absorbed (they were burned during surgery using RFA). I have 4 holes of various sizes that are showing signs of healing and closing. My surgeon has released me from care until next year when I return for a MRI to check how well my liver has finished healing. This process will take an additional 6-12 months. I am free to eat and drink at will, carry on physical activity as tolerated (the muscles are still healing and tender) and approach my OB about trying to have kids. The only catch is I can not take any hormones of any kind which I am just fine with.

For those of you just starting this process hang in there. It's emotionally draining and physically challenging. But keep pressing your doctors and if need be, do what I did when you don't get answers you know aren't right or your doctor's personality doesn't work with yours - CHANGE! If I had listened to my first one and "reduced my stress" I'd still be loosing weight and throwing up among many other things NOT related to stress. I knew I had something wrong and there was a way to treat it. No, I wasn't eager for a surgical solution but when it became clear what the nature of the problem was then I was agreeable to my choices - wait and observe or surgery. I made MY choice.

I think that would be my best bet. I was in Emory for 9 days after my surgery and it was horrible. I don't think after the past three years I could do it again. It has taken a lot out of me. I also had to have my uterus removed last november due to large fibroid and then my ovaries two months later due to a large tumor on the right ovary. All of these things can't be unrelated. I am using an estrogen patch for the hormone replacement. My GYN of course wouldn't do the liver thing. My Liver Transplant Dr. only checks for growth and blood work. He didn't refer me to a hepatologist just said to keep coming to him. I think b/c he expects another surgery. And my PCP doesn't want to do the pain management b/c he has heard that they don't hurt and doesn't want the responsiblity. So where do you go to after all of that. No one want to do anything. I hate going to Doctors b/c I feel like I am trying to convince them that my symptoms are real. I hurt for 10 years and went through 3 PCP until one of them found the tumor. Then he moved his practice two weeks before I had the surgery. What luck huh!

I had a liver resection 3 weeks ago to have an adenoma removed. It weighed in at 7lbs. I am healing well and feeling good. I had an oncologist remove it once my GI suggested surgery. I brought it to my my PCPs attention and within a month of realizing that something was growing I had it removed. Take charge of your care and find a doctor who is willing to listen.
Good Luck

Wow!! I bet you were glad to get rid of that "baby"! It weighed just as much as a newborn. I am glad you took charge and are doing well. Sounds like you had some pretty good Dr's too.

Tabatha D...
Congratulations on your progress! I am still waiting to see the liver specialists at UCSF (appointment is finally scheduled for Nov. 13), but it gives me hope that this thing will be over and done with and I can look into the possibility of getting back to my regular workout routine. I've started working out again, but I do feel some pressure and pain in my right side. Lately it seems like I can feel it more often, so I don't know if that has to do with my exercise, or something else. I am struggling with trying to lose weight and want to be as strong as possible before going in to surgery (if that's what they will need to do). I'm wondering, did you experience any nausea as one of your symptoms? I've notice it in the past few days, but only in the morning. And there's absolutely NO WAY I could be pregnant, so I'm wondering if it's related to my liver.

Obadie...
Can you let us know what type of surgery they performed on you, how long you were in the hospital, how recovery has been? I know, a lot of questions, but I want to be prepared for whatever comes my way. And how did your diagnosis come about? Did you notice any weight issues at all before surgery?

Thanks!

I had a liver resection of the right lobe. The surgery itself lasted 5 hours followed by a 5 day stay in the hospital. My recovery has been good. I am back to most of my daily activities after 3 weeks post op. I have to be careful not to lift anything too heavy or do excercises that strain the abs. I did experience some nausea as well as a feeling of fullness after eating very little. I was diagnosed after I asked my PCP to feel the right side of my abdomen because it felt firmer than my left side. He sent me to a GI who ordered a CT scan. The scan showed a growth so I was referred to a surgical oncologist who felt the growth was large enough to warrant removal rather than risk rupture. As far as weight goes , I had been losing weight without trying and after all is said and done I have lost 28 pounds. I also felt fatigued a lot of the time. Good Luck

What type of surgery did you have? Laproscopic, or did they open you all the way up? And how big (cm) was your adenoma? If it was 7 pounds, it must have been pretty big in diameter, right?

I know, so many questions.:)

I had to be opened all the way up. It was too big for anything else. I don't have the size in cm's but I was told it was the size of my head. I am waiting for the pictures.

Hi everyone. I'm now almost 10 weeks postop. I can finally say I feel like myself, even though I still have an open incision that we pack with alginate each morning. 70% of the incision is closed. I go for my baseline MRI on November 21st. I'm still losing weight, but I feel I'm eating at a regular rate. I have returned to my regular workout routine and all seems well..

Hi all -

About 6 weeks ago I thought I had pulled a ab muscle. I had discomfort under my ribs and through my back - into my right shoulder. I stopped working out, took it easy and finally went to work out again on Oct 8...did the stairmaster and ended up being VERY short of breath and the pain got worse. Went to my dr. the next day and she ordered an ultrasound that afternoon...thinking along the lines of gallbladder. The u/s showed nothing...and neither did all the bloodwork. She ordered a CT scan that Friday (my 36th bday unfortunately - the joke was the barium lunch I was getting that day ;-)...found out that evening that there was a mass about the diameter of a 50 cent piece and that I need to see the GI specialist. My dr. said it was very very unlikely it was cancerous but the biopsy would tell that.

Went to him the following Wed. and his take was a non-cancerous growth caused by birth-control. He said it was about the size of a golfball and that I should go off the bc and that in time it would shrink. No biopsy needed and sent me on my way...I did express concern about the discomfort and pain and when it would go away? He said discontinue all aspirin etc. as it appeared it may have bled into itself. So - that evening - he called me and said the more he thought about it - he would like me to see a liver surgeon. Got into the liver surgeon/oncologist that Monday (last Monday)...and thank God I did.

He advised that it is about the size of a baseball and immediately ordered a biopsy as that is the only way you can tell 100% if it is noncancerous. He talked either adenoma or FNH...I had the biopsy on Friday and we have an appt. with him on Wed to find out the results and the plan of action. If it is the ademona - he has already talked surgery ASAP to get it out.

I have been on bc for 20 years. I have repeatedly asked my dr's should I be going off of it, cycling on/off, changing types, etc. This was never discussed with me...and yes - I know it says it on the package...but that is why I repeatedly asked. My husband and I already knew that I would go off it next year when he turns 40 - we do not want children so he would get a vasectomy. Now that has obviously been moved up but unfortunately now we don't have the protective overlap of me being on the pill while he goes through the process...oh well - my health is what matters.

I have found reading this forum to be a great help...some a little scary but anyone who ventures into the forum world knows that each person is different and to read with caution. I will keep you updated with my progress..right now - I just want to hear the word "BENIGN!"