Liver disease

I am 67 yrs olds, just started going to doctor two years ago because I could get Medicare. I am reasonalby healthy, do cardio and heavy weights 5 times week, eat healthy as much as possible. Two years ago blood tests showed high counts pertaining to liver disease. Rather going on medications doctor wanted, I researched and found Milk Thistle was good for liver. Doctor disagreed; however began taking 1000mg daily. To date, the blood tests are now showing "normal levels". He did a imaging year and half ago and found scarring and small masses on the liver. He since has had blood tests to detemine cancer which came back normal, did another imaging which look the same as before, recently had a CT which came back inconclusive other than noting the same scarring, and now he want to do a MRI. I feel like he is all into expensive testing regardless if all the tests have not pointed to cancer. I am now at a point where he wants to schedule a MRI which is very expensive, and from what i am reading, not anyome conclusive than a CT in most circumstances. I should mention i will not let him do a LIver Biopsy because of the previous results and am apprehensive to having one done which i feel is not called for. With everything looking negative for cancer, should i proceed. Each tests has created huge anxieties and stress waiting for the results.

[HectorSF]

What I will tell you might seem frightening at first but I am telling this so you realize how serious liver disease or cancer of the liver can be. Diagnosing illness on your own based on what you have read on the Internet may be fine if someone has minor non-life-threatening health issues but if you have “scarring of the liver” and your doctor is worried about liver cancer, this is something that you should take very seriously. As both scarring of the liver, which is called "cirrhosis" or liver cancer can be fatal if not diagnosed and treated properly.

“Two years ago blood tests showed high counts pertaining to liver disease.”
What blood tests were done and what were the numbers of the results?
What is your platelet count?
Are there any other abnormal blood test results?

“Milk Thistle was good for liver.”
Studies have been done that show that milk thistle has no effect on liver disease. Because it is on the Internet doesn't make it true.

“To date, the blood tests are now showing "normal levels".
What tests are now normal that weren't before?

“found scarring and small masses on the liver. “
Scarring? Do you mean fibrosis or cirrhosis?
What type of masses on the liver?
Do you have the CT scan report?

“He since has had blood tests to determine cancer which came back normal”
There is no blood test that can detect liver cancer. There is a test, AFP that is used ONLY in combination with imaging studies to detect liver cancer. By it self is only 60% accurate. That means the 40% of people with liver cancer will have an abnormal AFP level.

“recently had a CT which came back inconclusive other than noting the same scarring”
If a CT scan saw scarring than it mean you have cirrhosis of the liver. You may feel well but don’t be deceived, cirrhosis can be a fatal disease if not managed properly. Also only patients with cirrhosis of the liver are prone to liver cancer. Liver cancer is a very serious and many times deadly disease. It is one the worse cancers you can have if not caught early.

An MRI with contrast is the best test for determining if a growth in the liver is benign or cancer. You should have a MRI perform assuming whoever is doing the testing is experienced in diagnosing liver cancer. Most radiologists are not experts in liver tumors so they can miss cancer. Which is why for the best results you should have the MRI done at a liver transplant center.

Not doing a liver biopsy is a poor choice. If you have cirrhosis it means you can be prone to cancer depending on the cause of your liver disease. Both diseases can be fatal if not treated. Have you been tested for hepatitis B and C? You are in the age group that has the most people infected with hepatitis C. Most people with hepatitis C have no symptoms until their liver fails.

Diagnosing cirrhosis and liver cancer is not that difficult if you go to a liver transplant center. A local doctor, a gastroenterologist can only go so far become they don’t have the resources to do it properly. The technicians that know how to setup the imaging equipment, the doctor to interrupt the results etc.

I would get a referral to go to the University of Oklahoma City. They can diagnose any liver related issue. Then you will know if you have anything to worry about. I had a friend that went to OU who has cirrhosis and they helped her a lot.

I have both cirrhosis of the liver and liver cancer. I have been being treated for five years at my transplant center so I am very familiar with your possible liver conditions. I am currently waiting for a liver transplant in the next 6 months or less because I don’t have much more time to live. You don’t want this to happen to you. Untreated liver cancer that gets unmanageable because it has advanced to far leads to death in 4-6 months and it is a very painful way to die.

Refusing to have medical tests done is your choice of course. But you should be aware of the risk you are taking by not being tested. Ignoring illness won’t make it go away.

Oklahoma Transplant Center
940 NE 13th Street
405-271-7498, 1-888-777-7081

Cirrhosis:
Cirrhosis is scarring of the liver and poor liver function. It is the final phase of chronic liver disease. Symptoms may develop gradually, or there may be no symptoms.

Expectations (prognosis)

Cirrhosis is caused by irreversible scarring of the liver. Once cirrhosis develops, it is not possible to heal the liver or return its function to normal. It is a serious condition that can lead to many complications.

A gastroenterologist or liver specialist (hepatologist) should help evaluate and manage complications. Cirrhosis may result in the need for a liver transplant.

Liver Cancer:
Hepatocellular carcinoma (HCC) is cancer of the liver. Hepatocellular carcinoma accounts for most liver cancers. This type of cancer occurs more often in men than women. It is usually seen in people age 50 or older.

Treatment:
Aggressive surgery or a liver transplant can successfully treat small or slow-growing tumors if they are diagnosed early. However, few patients are diagnosed early.

Expectations (Prognosis):
The usual outcome is poor, because only 10 - 20% of hepatocellular carcinomas can be removed completely using surgery. If the cancer cannot be completely removed, the disease is usually fatal within 3 - 6 months. However, survival can vary, and occasionally people will survive much longer than 6 months.

I wish you all the best!
Hector

[Chuck2892]

Thank you for your message. I was ready to cancel the MRI as all he other tests have been inconclusive; however the blood tests continue to get back to normal. I amy going to take your advise and ask the doctor for a referral to Okalhoma to get this figured out once and for all.I have not been to a doctor since I took a physical with Los Angeles PD 1967. Have never been sick and if I hadn't got insured with Medicare, probably would never have gone to a doctor as I feel healthy and have never had any concerns until having these damn tests. I will keep you in my prayers and hope you get the liver transplant you are waiting for. Curious, how easy it to get a donor and how long is the lists to receive one?

[HectorSF]

Hi Chuck.

An MRI can differentiate between different types of liver masses (benign or cancer) that are greater than 1 cm in size as long as they have experienced people that diagnose liver cancer on a daily basis. It it is cancer it will grow over time. Transplant centers have radiologist that specialize in diagnosing these masses. Since liver cancer in most cases can only be cured with a liver transplant it is important to know if you do or do not have it.

I can assure that OU can do full assessment of any liver disease you may have. The doctors their work with people with cirrhosis and liver cancer on a daily basis. They are THE experts in diagnosing, treating and monitoring liver disease. They will perform all the tests needed to know if these masses are something you need to do something about or if they are benign. It will give you piece of mind knowing what your health status truly is.

I am 60 years old. When I was young I never had any serious health issues. Except I was infected with hepatitis C which the medical profession had no idea in the 70 and 80 could cause cirrhosis and liver cancer. As we age things start to breakdown. I started having medical issues that weren't life-threatening but still something I had ever experienced before.
Many illnesses are silent until they become very dangerous. Obviously you have heard of people who everyone thought was healthy die of a heart-attack or develop cancer and only have a short time to live. We always think it can happen to others but not us. I can tell you it was quite a shock when I was diagnosed in 2007 with cirrhosis and in 2009 with cancer in my foot and in 2011 with liver cancer. Luckily I have been seeing doctors over the years and my cancers were caught early. I would hate to think of what could have happened if I hadn't been seeing my docs on a regular basis for my cirrhosis.

Hopefully this is all a false alarm but just in cause it isn't, I would hate to see you diagnosed when you don't have many options remaining like myself.

If you have any question feel free to ask. I am listed for transplant at two transplant centers and have had countless tests, treatments, preventative measures over the last 5 years. The first time you have anything done can be scary because it is something new so that is only natural. I have been through some dark times and some painful times but I can tell you that suffering temporarily is well worth living another day in my opinion.

"how easy it to get a donor and how long is the lists to receive one?"

Livers and all organs are in short supply because there are not enough people donating their organs upon their death. That is the main reason it can take a long time. Sometimes years to get a transplant.

Livers are are a limited national resource; thus, it is only right that donor livers be allocated in a fair manner.  It is the policy of UNOS (United Network for Organ Sharing) that all potential recipients of organ transplants must be listed on the national UNOS waiting list, with the priority for a donor organ determined by factors discussed below.

In general, a donor is matched to a potential recipient on the basis of several factors: ABO blood type, body size, degree of medical urgency and MELD score (Model for End-Stage Liver Disease). UNOS uses a computerized point system to distribute organs in a fair manner. Recipients are chosen primarily on the basis of medical urgency within each ABO blood group. Waiting time is only a factor when patients have the same MELD score.

In summary, the priority of an individual patient on the UNOS waiting list for a donor liver depends on the following factors:

* Degree of medical urgency as determined by the MELD score (highest priority given to Status 1 patients)

* Blood type (priority is identical > compatible > incompatible ABO blood type) People that have type O blood have the longest wait times.

* Body size (the acceptable body range is determined by the transplant surgeon)

* Local versus distant

So OU has a shorter wait list then here in San Francisco were we have the most people in the country waiting for a transplant. You would have to ask OU what MELD score they are transplanting at. Here it is in the mid- 30s.

What is MELD? How will it be used?

The Model for End-Stage Liver Disease (MELD) system was implemented February 27, 2002 to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.
(My current MELD score is 30.)

Where do the livers for transplants come from?

Most livers come from people who have just died. This type of donor is called a deceased donor. Sometimes a healthy living person will donate part of his or her liver to a patient, usually a family member. This type of donor is called a living donor. Both types of transplants usually have good results.

All donated livers and living donors are tested before transplant surgery. The testing makes sure the donor liver works as it should, matches your blood type, and is the right size, so it has the best chance of working in your body. Adults usually receive the entire liver from a deceased donor.

Hope this helps!
Hector

[Chuck2892]

I pulled my tests with following:
ALT 78
AST67
ALBUMIN 4.0
BILIR .3
TOTAL BIL .08
PLATLETS 87
Asked my doctor of the MRI tech would be an expert in liver tumors and he stated "he had no control" who did the MRI. He did say he would refer me to OK or University of Arkansas Medical Sciences Campus, or Barnes Jewish Hospital St Louis. Obviously for me living in Arkansas the UAMSC would be close. Do you have any info on these. He also said he would refer a Liver Specialist or Hepatologist. Being new to this any idea which one? or do they decide?

[HectorSF]

Your platelet count is low. Not very low but lower than normal which is usually about 150-450. It could be an indication of early cirrhosis. ALT and AST indicate something is injuring your liver.

When your doctor gives a referral he should mention liver disease and liver masses. The hospital will set you up to see a hepatologist (a liver specialist). The hepatologist will assess your condition and have you do the required tests.

"University of Arkansas Medical Sciences" has a Gastroenterology department AND a Liver Transplant department. UAMS liver transplant program is Arkansas' only liver transplant program. They would have experienced and trained people to diagnose liver cancer. (HCC).

"With highly skilled and trained specialists and the latest technology, UAMS' gastroenterology service is the most complete in the state. Our gastroenterology specialists include nationally known experts in the treatment of stomach ulcers, hepatitis, inflammatory bowel diseases, colitis, Crohn's disease, cirrhosis and conditions affecting the bile duct cells.

Using the latest in diagnostic tools, we can identify and develop a treatment plan for problems in the stomach, colon, esophagus, liver, pancreas, intestines and other digestive organs.

Our hepatologists, or liver specialists, diagnose and treat hepatitis, fatty liver and non-alcoholic fatty liver disease, along with other conditions. These specialists are part of the multi-disciplinary UAMS liver transplant program, Arkansas' only liver transplant program.

Gastroenterology program highlights include:

Our 10,000-square-foot endoscopy center, which includes a gastrointestinal (GI) motility procedure room and dedicated Endoscopic Retrograde Cholangiopancreatography suite.

Endoscopic Ultrasound, which allows detailed visualization of the GI tract. The system, the only one of its kind in Arkansas, is located at UAMS.

A Liver Disease Referral Center with a toll-free phone number (1-866-91-LIVER or 1-866-915-4837) for comprehensive care of the most serious liver conditions.

Appointments

The Gastroenterology Clinic is by referral only. Please contact your primary care doctor or visit one of our doctors in the Center for Primary Care to obtain a referral.

What should I bring to the appointment?

For your first appointment, please bring a photo ID and your insurance card along with a list of any medications you're taking, including over-the-counter medications. You should also bring any medical records you can provide, including slides or test results from other clinics.

For future appointments, please provide updated medical and insurance information.

http://www.uamshealth.com/gastroenterology

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Here is a link to Barnes Jewish Hospital St Louis where they also have the services you need.

http://www.barnesjewish.org/digestive-diseases

Hepatology services (Liver) -- Diagnosing and treating liver diseases; evaluation of treatment options for hepatitis C, evaluation for suitability for liver transplants.

Gastro-intestinal Cancer services -- Diagnosing and treating esophageal, gastric, intestinal, colorectal, liver and pancreatic cancers.

Hope this helps.
Hector

[Chuck2892]

Thanks for you response. It appears you have had an abundance of information passed your way do to your illness. I guess I have been somewhat in denial as I have never been to a doctor in years until I got coverage thru medicare, have been healthy I thought with absolutely no problems until this was found. Now I have something potentially serious to deal with, almost wish I had never gone to a doctor and not found out. This  obviously is not an option.

[HectorSF]

In time you will see that finding out now instead of a year or years from now is much better. You would have the most options when you know early. You don't want to end up with liver cancer that is too late to treat. I will spare you the details but I assure you don't want to have waited to long to find out about cancer of the liver. At that point you will only have 4-5 months to live. That could really ruin your whole day!!!

I hope this all turns out to be not as bad as you might fear.

Take care!
Hector