Very rare liver issue.

Keizer · Regular Joined: 23 Jul 2007 Posts: 12

Hi everyone, I am new to the forums, and want to share my story. About 3.5 years ago, my wife suddenly dropped to the floor with severe pain in her liver area. We didn't think much of it, but these episodes would return every once in awhile. Finally she saw a naturopathic doctor who discovered that my wifes liver functions were not right. An ultrasound showed a small mass in her liver bile duct. Bile duct cancer was the likely prognosis. We were immediately sent to a major hospital up north from us that is considered one of the leading liver specialists on the west coast. They did a CT scan, and a procedure where they went down my wifes throat with a camera, and actually fished this camera into her bile ducts of her liver to explore. Sure enough, they found a tumor, and took samples. All samples came back negative for cancer. The problem was though, that this tumor had grown large enough to plug up the flow of bile in her liver, and she was getting really sick. Anyway, two years ago, they did a resection, where they removed the lobe of the liver where the tumor was located. The other lobe of her liver was totally fine. She recovered from the surgery, and was getting scanned every six months. Her last six month scan showed that there is a cyst/polyp on the outside of the liver down by her pancreas. They did a procedure where they took samples of fluid, and tissue from this cyst, and again there were no signs of cancer. They then did the same procedure where they went down her throat with a camera to explore the bile ducts of her liver. Once again they found a blockage in her bile ducts. since she only has one lobe of her liver left, a similar operation is out of the question. They set up a meeting for us this week at another hospital where liver transplants are performed. However her doctor is telling us that she most likely won't be a candidate because of the cyst that is now on the outside of her liver. He said about the only other option is radiation treatments. We feel like things are becoming hopeless. Her doctor said that they are used to dealing with cancer, and that there is just not that much information on what my wife is experiencing. He told us that they can only find nine documented cases in the world of what my wife is dealing with.

I am really looking for information/opinions on what to do. Does anyone have any experience with benign bile duct tumors? Although they are not proving themselves as cancer, they certainly are doing the damage of cancerous tumors. I feel like the doctors are giving us death sentence. We are becoming hopeless. I found information in another thread about live liver transplants. Here is the thread.
http://cancerforums.net/about3117.html

My wife has a sister that is willing to donate if she proves to be a candidate. They do not do live doner transplants here in our area.

I appreciate any information that anyone can provide.

Thanks!!

Keizer · Regular Joined: 23 Jul 2007 Posts: 12

Well, I assume the lack of responses proves what the doctors are saying about how rare this is.

I was hoping someone would know something about this issue. The large tumor that was removed two years ago via resection, was really fragile and fluffy. It was not aggressively trying to embed itself into the blood vessels. It was just sitting in the bile duct, and the doctors think that pieces were actually breaking off occasionally which was partly the reason for the pain.

brainman · Posted: Tue Jul 24, 2007 2:03 pm Post subject: Re: Very rare liver issue.

Keizer, I have to admit a little confusion in why I did not respond. All the biopsies have shown no signs of cancer yet your wife's doctor still thinks it is cancer? My questions are:

1. What makes him think it is cancer?
2. Has he told you what type of cancer he suspects?
3. If it is not a cancer, will radiation really help?
4. Is he actually calling it a "benign bile duct tumor"?

Benign tumors (non-cancerous) can do a lot of damage... just depending on where they are located. Hopefully, her medical team can identify a solution. Keep us informed. I will be keeping your wife in my thoughts and my prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Keizer · Regular Joined: 23 Jul 2007 Posts: 12

[quote="brainman"]Keizer, I have to admit a little confusion in why I did not respond. All the biopsies have shown no signs of cancer yet your wife's doctor still thinks it is cancer?
[/quote]

No, they do not think it is cancer. But they certainly want to test to make sure, which they have done numerous times. They have mentioned that they think it is something "pre-cancerous". During our last visit with the hospital last week, her doctor said that it is a really rare situation, and he could only find nine documented cases in the world. He said because of that, there is not alot of info on treating it.

[quote="brainman"]
My questions are:

1. What makes him think it is cancer?
[/quote]

They don't think is is cancer. Sorry if I made it sound that way. They said they feel it may be something pre-cancerous, like mentioned above.

[quote="brainman"]
2. Has he told you what type of cancer he suspects?
[/quote]

No. After her very first CT scan, they said it was most likely bile duct cancer. However, biopsy results showed no cancer. Even after her liver resection, they were actually able to test the entire tumor now that it was out of her body. Those tests all came back negative for cancer.

[quote="brainman"]
3. If it is not a cancer, will radiation really help?
[/quote]

I have no idea. I kinda feel like they would be using radiation as a last ditch effort to try to slow it down.

[quote="brainman"]
4. Is he actually calling it a "benign bile duct tumor"?
[/quote]

You know whats funny, the word tumor hasn't really even been used all that much by her doctor. They keep calling this new growth a cyst. It's actually on the large side, and is filled with fluid. They have takin tissue samples of this cyst, as well as drained the fluid and tested that. Both came back negative for cancer. This cyst is actually on the outside of the liver, but the Endoscopy procedure that she had done last week shows a new blockage in her bile duct of her liver.

[quote="brainman"]
Benign tumors (non-cancerous) can do a lot of damage... just depending on where they are located. Hopefully, her medical team can identify a solution. Keep us informed. I will be keeping your wife in my thoughts and my prayers.[/quote]

Yes they can do alot of damage. Because of the damage done so far, they are telling us that the best solution for a cure, is a liver transplant. We have a meeting up north tomorrow at another hospital to talk about this very thing.

My wifes regular doctor told her yesterday, that we really need to be transferred the the Mayo clinic down in Arizona. She said that they specialize in cases like this, and do live doner liver transplants. My wife has a sister that is willing to donate if she is a proper match.

Keizer · Regular Joined: 23 Jul 2007 Posts: 12

I am sorry. I did not format my above replies properly. It makes it kind of hard to read through it all. I hope you can see what I did there.

Another thing I forgot to mention, is that her doctor wanted to make sure that this issue was not going on somewhere else in her body. Because it was found in her liver, they were afraid it may have spread from somewhere else, since your liver is a filter. My wife has been checked from head to toe, and all her other organs were fine. They told us that all her organs, including her liver look perfect. Except of course for the growths on the liver. They said this is nothing that she did to herself. She has always taken such good care of her body.

swenson96825 · New User Joined: 24 Jul 2007 Posts: 5 Location: Honolulu

I so sorry to hear about your wifes situation. I wish I had some information for you. I can just relate to having a sick loved one and not a lot of medical knowledge on the horizon.

My mothers been fighting some mysterious cancer in the liver for the past 2 years. The doctors initially said she had a "cyst" and a "growth" in/around her bile duct and on her liver. She too was checked from head to toe and found no other evidence of cancer any where in the body. She had a liver resection and in my mothers situation these "growths" returned and ended up to be malignant. The docs could not identify (and still can't) what type of cancer. The doctors are telling us that her situation uncommon and there us just not enough information out there.

I'm only sharing my story because I understand your sense of hopelessness. I wish I could offer more than a few words of understanding. I think we just have to try and have faith, hope and continue to ask questions and seek out experts in the field. I know it's difficult, but never give up hope. You never know what tomorrow may bring.

Keizer · Regular Joined: 23 Jul 2007 Posts: 12

Thanks for sharing all that. When my wifes tumor returned after her resection, they still came back negative for cancer after testing.

Today we had an appointment with a hospital up north that does liver transplants. They had all of my wifes reports, and DVD's with all the photos taken during her many procedures. This guy said that my wife has Cholangiocarcinoma (Cancer). We told him that none of the biopsy reports came back with any malignant cells......even the latest tests from last week. He told us that he still tghinks it is Cholangiocarcinoma. He told us that my wife is not a candidate for a liver transplant because past experience shows poor results with what my wife has.

Heres the puzzling part. My wifes regular doctor called today. He is the one that did all of the diagnostic endoscopy work, where he got photos and all the samples for testing. We told him that the other doctor said he thinks what my wife has is Cholangiocarcinoma. He said no way. He said he does not care what this other doctor said, there is no way it can be Cholangiocarcinoma. He went on to say that if that was the case, my wife would be dead already. She has been dealing with this since 2003, and it is now 2007. Her regular doctor said that the tumors are musinage (SP) creating tumors, and do not resemble Cholangiocarcinoma. He said that what my wife has is so rare that he has only seen one other case come through their hospital. That case was cured with a resection.

We are being referred to the Mayo clinic now, so we will see where that goes. If they don't have good news, I am not sure what else to do.

Thanks for listening.

Keizer · Regular Joined: 23 Jul 2007 Posts: 12

By the way, does anyone have any links on information about talking to children about this? We have a ten year old, and we haven't told him much about what is going on. I am sure he knows something is up, but he isn't asking any questions.

Thanks!

brainman · Posted: Wed Jul 25, 2007 10:08 pm Post subject: Re: Very rare liver issue.

Keizer, no apologies necessary. The way you replied to my questions was, in fact, very easy to follow and understand. Thank you for your clarifications. I am sorry that the two doctors disagreed so significantly Sad

It leave you and your wife in a very difficult position to make treatment decisions. I am glad that she is going to see the doctors at the Mayo Clinic. Dr. Leo (the owner of this forum) was trained there. You might want to email him and ask for his input on the doctors at the Mayo Clinic. Hopefully, they will have some clear answers for you and your wife. Not knowing who the two doctors your wife has seen, I would trust whatever the doctors at the Mayo Clinic say above what anyone else says.

I will continue to keep you and her in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

brainman · Posted: Wed Jul 25, 2007 10:14 pm Post subject: Re: Very rare liver issue.

I think the American Cancer Society has some literature oriented towards children who have loved ones with cancer. You might want to check their website or go by their local office.

You might also check with pediatric oncologists or go to a children's hospital. I know that what they will have is directed to children who have cancer themselves, but that might also have some literature to help the dialog between you and your children.

Finally, children are very resilient. They know more than you might expect and can handle more than we often assume. Open the conversation with "You know that your mother is very sick" and let your child direct the conversation from there.

God bless you and your family.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Keizer · Regular Joined: 23 Jul 2007 Posts: 12

The Mayo clinic received all of my wifes data on her issue with her liver. They said there is nothing they can do for her as far as a liver transplant. Everything is way too generic in the procedures for all of this. First of all my wife has two sisters willing to donate part of their liver. Of course the Mayo clinic does not know this fact. We relied on our doctor from the other hospital to do the referral, and I did not see that info in the paperwork. I presume their answer was based on a liver transplant that would involve having to find a liver. She has a tumor on the outside of her liver, as well as inside her bile duct. The surgeon at the hospital that we have been attending is suggesting surgery in stages. First to remove the tumor on the outside, and then later a liver transplant. We are going to talk to him next week about a procedure that involves a small incision, that will allow him to look around at this tumor.

I just find it confusing how some people with full blown colon cancer, that has spread to the liver and lungs can be treated, yet they act like what my wife has is untreatable. Not one tissue sample has come back with malignant cells.

Anyway, just giving an update.

brainman · Posted: Tue Jul 31, 2007 7:29 am Post subject: Re: Very rare liver issue.

Thank you Keiser for the update. Having worked in hospitals as a chaplain for most of my adult life, 2 of which I had assignments with transplant teams, I do not believe that knowledge of your wife's sisters' willingness to give part of their livers would not make any difference in the transplant team's decision. Most likely, the decision was totally based on the fact that your wife has a tumor growing inside and outside of her liver/bile duct.

I certainly can sympathize with your confusion about the untreatable status of your wife's tumors. It does sound like her doctors do have a treatment plan: two surgeries. Chemotherapy and/or radiation therapy are not options because non-malignant tumors are not easily treatable with either. Chemotherapy and radiation work best on rapidly growing cancers. Surgery on the liver is particularly difficult because of the large number of blood vessels traversing it. If the tumor envelops any of these or the bile duct, it just increases the level of potential surgical complications.

I am sorry that my feedback sounds so negative and/or defensive of the medical teams and their decisions. I am not trying to defend them. I am just trying to examine their decisions and, like you, trying to understand. God be with you and with your wife.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Keizer · Regular Joined: 23 Jul 2007 Posts: 12

The part that is really disturbing, is how long the hospital took in researching this latest tumor. It was found back in February, and tested negative for malignant cells. It was about the size of a quarter back then. Both the doctor that did all the diagnostic endoscopy procedures, and the surgeon that did the liver resection two years ago, told us we had time. They both said that my wife was not having any symptoms of any kind, and so they did not schedule the next diagnostic endoscopy procedure until July. The problem is, that the tumor increased in size between the time they first discovered it, and NOW. Because of this size increase, she is being denied a liver transplant, and possibly any surgery to remove it. I really feel that this was negligence on their part. I would think that if a tumor was discovered, they would have some protocol in place that would require them to act aggressively. Instead we were put off for months, with the assurance that time was on our side.

Sorry for the rant.

Keizer · Regular Joined: 23 Jul 2007 Posts: 12

Well, so much has happened since I last posted here. I almost don't want to post about it and jinx it somehow. I am hoping that what I post will give others some hope. Last summer my wife did have an exploratory procedure done to confirm diseased tissue that showed on her CT scan. As mentioned earlier, she did have a tumor that had slowly increased in size from February to July of last year. They wanted to confirm that this disease had spread to these other areas that a CT scan revealed. They made three tiny incisions and filler her abdomen with some kind of gas. They then could view the actual suspect tissue with tiny cameras. I was really trying to prepare myself for the worse, but after the procedure, the surgeon returned to tell us that all the suspect tissue was perfectly healthy. He really had no idea what it was that showed up on the CT scan. Anyway, the fact that it hadn't spread gave them the green light to remove the tumor on the outside of the liver and pressing against her pancreas. The surgeon said her pancreas was perfectly healthy, yet an innocent bystander of the tumor. In September of last year they did a Whipple procedure to remove the tumor. The surgeon said there were no surprises, and that the tumor was exactly what they had figured it was. They are a mucinous (SP) creating tumor, kinda fluffy etc. Not really an aggressive type of tumor. Anyway, she was hospitalized for around ten days and went home. She did end up with an infection, and spent more time in the hospital to open the wound, and let it heal from the inside out. After her recovery, she did chemo and radiation. The radiation was concentrated on her liver. The surgeon said there was nothing aggressive going on in her remaining lobe of her liver, but though radiation was a good idea. I'm sorry for not knowing the exact details of everything. Anyway, we drove the 4 hours round trip five days a week for her treatment. I'm trying to remember how long we did that for. I want to say five months or there abouts. Anyway, after that, she got to take a break, and go to Disneyland. Then she got back on a follow up treatment that consists of two weeks on, and two weeks off. She will be done with that sometime in August. Her last CT scan was a few weeks ago, and everything looks good. This has been an extremely stressful ride, but really makes you appreciate life. My wife and I are very grateful for how this has played out, but we are also not ignorant to the fact that it could return again. The hospital where she has been getting treatment claims that she is one of three people that they have seen with this type of disease. She is the first that is being treated with chemo and radiation afterward. The other two people from what I have heard both had a recurrence too. One was not operable the second time around.

Anyway, I just wanted to share what has happened.

idobelieveinfairies · Posted: Thu Jul 17, 2008 8:44 am Post subject: Re: Very rare liver issue.

Thank you for sharing your wifes story.

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