Aa
what do I ask the surgical team?
I received a call from the hospital [medical college of Wisconsin Froedert] yesterday. The P.A. called, then the nurse, and then the head Doc, Dr. Saeian,[the boss] :>) They all took the time to talk to me and I’m very grateful for that. I am a 2 time non responder to hvc1a , and an MRI has disclosed a what appears to be a 2cm cancerous tumor on my liver. My enzymes, an enlarged spleen, early cirrhosis, are all consistent with liver cancer. The Dr. made the point that, the various surgeons, radiologists, and Drs, present thought there were a number of promising options. They seem to be leaning towards a transplant, burning the tumor to reduce risks of spreading?, and resolving the HVC at some later date.
I am vaguely aware that there are procedures to apply for transplant.
I have a conference with them on Thursday, april 1st. [no fooling]
I’ve checked my insurance and have some paperwork from them to take along. [insurance looks good]
My question is, what should I ask about? Is there some who have gone through this before that could give me some input? If you had the chance to do it again what would you do differently? Are there pitfalls or potential problems that I could be avoiding, by asking this excellent team of specialists?
I am vaguely aware that there are procedures to apply for transplant.
I have a conference with them on Thursday, april 1st. [no fooling]
I’ve checked my insurance and have some paperwork from them to take along. [insurance looks good]
My question is, what should I ask about? Is there some who have gone through this before that could give me some input? If you had the chance to do it again what would you do differently? Are there pitfalls or potential problems that I could be avoiding, by asking this excellent team of specialists?
Preparing for your appointment
By Mayo Clinic staff
If you suspect you have a liver problem, start by seeing your family doctor or a general practitioner. If it's determined that you may have liver problems, you may be referred to a doctor who specializes in the liver (hepatologist).
Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be well prepared. Here's some information to help you get ready, and what to expect from your doctor.
What you can do
* Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
* Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
* Write down key personal information, including any major stresses or recent life changes.
* Make a list of all medications, vitamins or supplements that you're taking.
Consider taking a family member or friend along. Sometimes it can be difficult to absorb all the information provided during an appointment.
* Someone who accompanies you may remember something that you missed or forgot.
^ Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For liver problems, some basic questions to ask your doctor include:
* What is likely causing my liver problems?
* What kinds of tests do I need?
* Are my liver problems temporary or chronic?
* Can my liver problems be treated?
* Are there treatments to relieve my signs and symptoms?
* Should I stop taking certain medications or supplements?
* Should I avoid alcohol?
* Should I see a specialist? What will that cost, and will my insurance cover it?
* Are there any brochures or other printed material that I can take with me? What websites do you recommend?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask other questions at any time during your appointment.
What to expect from your doctor -
Your doctor is likely to ask you a number of questions. Being ready to answer them may allow more time later to cover other points you want to address. Your doctor may ask:
When did you first begin experiencing symptoms?
Have your symptoms been continuous or occasional?
How severe are your symptoms?
What, if anything, seems to improve your symptoms?
What, if anything, appears to worsen your symptoms?
Good luck!
hector
By Mayo Clinic staff
If you suspect you have a liver problem, start by seeing your family doctor or a general practitioner. If it's determined that you may have liver problems, you may be referred to a doctor who specializes in the liver (hepatologist).
Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be well prepared. Here's some information to help you get ready, and what to expect from your doctor.
What you can do
* Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
* Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
* Write down key personal information, including any major stresses or recent life changes.
* Make a list of all medications, vitamins or supplements that you're taking.
Consider taking a family member or friend along. Sometimes it can be difficult to absorb all the information provided during an appointment.
* Someone who accompanies you may remember something that you missed or forgot.
^ Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For liver problems, some basic questions to ask your doctor include:
* What is likely causing my liver problems?
* What kinds of tests do I need?
* Are my liver problems temporary or chronic?
* Can my liver problems be treated?
* Are there treatments to relieve my signs and symptoms?
* Should I stop taking certain medications or supplements?
* Should I avoid alcohol?
* Should I see a specialist? What will that cost, and will my insurance cover it?
* Are there any brochures or other printed material that I can take with me? What websites do you recommend?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask other questions at any time during your appointment.
What to expect from your doctor -
Your doctor is likely to ask you a number of questions. Being ready to answer them may allow more time later to cover other points you want to address. Your doctor may ask:
When did you first begin experiencing symptoms?
Have your symptoms been continuous or occasional?
How severe are your symptoms?
What, if anything, seems to improve your symptoms?
What, if anything, appears to worsen your symptoms?
Good luck!
hector
Hector you rock!
It will take me a few hours to go through all your good comments, I do get the impression that the team will proceed with transplant preparation. I'll let you know about the RFA therapy, and I will put that on my question list, You have no idea how I value the time and the effort you take to answer me. I do declare
if I get through this I'll come out there and give you a hug!
It will take me a few hours to go through all your good comments, I do get the impression that the team will proceed with transplant preparation. I'll let you know about the RFA therapy, and I will put that on my question list, You have no idea how I value the time and the effort you take to answer me. I do declare
if I get through this I'll come out there and give you a hug!
Thankyou OH, I do have my wife who is incredibly supportive, the insurance only provides for necrosis a dead liver donation? I will mention the ammonia thing and bring up diet questions to the team, so thanks for that insight. thank you for the question list and the link.
larry
larry
Do you have someone helping you? It's really helpful if your spouse or a good friend can assist you with these things.
I dug this up, hope some of it is helpful.
http://www.medhelp.org/posts/Hepatitis-C/LIVER-TRANSPLANT/show/1563830
http://www.transplantliving.org/beforethetransplant/list/questions.aspx
Questions to ask your doctor about liver transplantation
Do you have a transplant support team?
How long will it be before a liver becomes available?
What should I do to prepare my family?
How long will the surgery last?
How long will I be in the hospital?
What should I expect after surgery?
How long is the recovery?
Will insurance cover the cost of a liver transplant?
Will I have a large scar?
Where will the incision be located?
Does a liver transplant cure liver cancer?
Will I be able to do all the same things after a transplant?
What are the long-term factors to consider with a liver transplant?
Should I make special accommodations for care after a transplant?
What is the success rate?
What are the risks?
Will I need to be on any special medications after the liver transplant?
How long could I be on these medications?
I dug this up, hope some of it is helpful.
http://www.medhelp.org/posts/Hepatitis-C/LIVER-TRANSPLANT/show/1563830
http://www.transplantliving.org/beforethetransplant/list/questions.aspx
Questions to ask your doctor about liver transplantation
Do you have a transplant support team?
How long will it be before a liver becomes available?
What should I do to prepare my family?
How long will the surgery last?
How long will I be in the hospital?
What should I expect after surgery?
How long is the recovery?
Will insurance cover the cost of a liver transplant?
Will I have a large scar?
Where will the incision be located?
Does a liver transplant cure liver cancer?
Will I be able to do all the same things after a transplant?
What are the long-term factors to consider with a liver transplant?
Should I make special accommodations for care after a transplant?
What is the success rate?
What are the risks?
Will I need to be on any special medications after the liver transplant?
How long could I be on these medications?
You need to have your ammonia levels tested. High ammonia levels are common with decompensated cirrhosis and cause something called encephalopathy, a kind of brain fog. You can easily deal with it with a medication called lactulose.
The other thing is you need to go on a no salt ( okay very very low salt) diet. Cut out all red meat. Red meat increases the ammonia. Salt contributes to fluid build up.
Read labels and watch for sodium content. Even bagged organic salad may have added salt.
If I think of anything else,I'll post it.
The other thing is you need to go on a no salt ( okay very very low salt) diet. Cut out all red meat. Red meat increases the ammonia. Salt contributes to fluid build up.
Read labels and watch for sodium content. Even bagged organic salad may have added salt.
If I think of anything else,I'll post it.
Oooops! My meeting is in 2 days sorry speaking of befuddled minds! Thanks for the reply
Here I am trying to dig through my muddled mind back to when my mind was even more muddled to recall what questions I asked prior to my transplant.
Whereas Hector is awaiting one himself, very up on the research and can give you a more thorough answer than I ever could.
Since your appointment isn't for over a month, I suggest you send Hector a private message asking your question just encase he misses this post.
Tell him you need the information before April 1.
I am certain he will reply.
Here are a few questions I remember asking.
How many transplants has the facility done?
What is their success rate ?
Do they do live liver ?
How long approximately will you have to wait for your transplant?
Whereas Hector is awaiting one himself, very up on the research and can give you a more thorough answer than I ever could.
Since your appointment isn't for over a month, I suggest you send Hector a private message asking your question just encase he misses this post.
Tell him you need the information before April 1.
I am certain he will reply.
Here are a few questions I remember asking.
How many transplants has the facility done?
What is their success rate ?
Do they do live liver ?
How long approximately will you have to wait for your transplant?
Hector is recovering. He told me last night he was exhausted from writing one reply and was going back to sleep.
No doubt he'll be back and responding when he can, more likely at night.
Unclear: I had a transplant though I never had cancer. Mine was a related live liver, my daughter was my donor.
You could ask if live liver is an option at that transplant center.
The main advantage of live liver is you aren't on a waiting list.The down side is you need to have someone to be your donor.
The way the waiting list works is they go by your MELD score. The patient with the highest MELD score gets first dibs at the liver ( hope you don't mind my wording it this way).
You and the donor have to be a match whether live or cadaveric.
Number one is blood type.
I'm on West Coast time, sipping my coffee while my brain slowly wakens. I'll send you more info later.
Hang in there. New livers make you feel better than you have in years and years. Its amazing.
OH
No doubt he'll be back and responding when he can, more likely at night.
Unclear: I had a transplant though I never had cancer. Mine was a related live liver, my daughter was my donor.
You could ask if live liver is an option at that transplant center.
The main advantage of live liver is you aren't on a waiting list.The down side is you need to have someone to be your donor.
The way the waiting list works is they go by your MELD score. The patient with the highest MELD score gets first dibs at the liver ( hope you don't mind my wording it this way).
You and the donor have to be a match whether live or cadaveric.
Number one is blood type.
I'm on West Coast time, sipping my coffee while my brain slowly wakens. I'll send you more info later.
Hang in there. New livers make you feel better than you have in years and years. Its amazing.
OH
I saw a post from HectorSF last night, I think he's back, and am sure he will find you. While I'm sure you're frightened, it sounds as though you're in excellent hands. Sending hope you way...
One of our forum members, Hector, knows quite a lot about this. He is not around this week, hope he will be back soon. In the meantime, I'll share a link he sent me about treating HCC (hepatocellular carcinoma).
He said:
The best paper on liver cancer is "Management of Hepatocellular Carcinoma: An Update" AASLD Practice Guidelines.
http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20practice%20Guidelines/Hccupdate2010.pdf
For information about TACE see page 22. "Transarterial Embolization and Chemoembolization" section.
----------------------------------------------------------------------------------------------------------
When your doctors talk about "burning the tumor, " is TACE what they're speaking of? This is one way that HCC can be treated. If this is not the procedure they are referencing, then you would want to know the name of the procedure so that you can read about it.
I hope the link is helpful, so sorry you're having to go through all this, and hoping for your smooth passage through these waters.
Lapis
He said:
The best paper on liver cancer is "Management of Hepatocellular Carcinoma: An Update" AASLD Practice Guidelines.
http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20practice%20Guidelines/Hccupdate2010.pdf
For information about TACE see page 22. "Transarterial Embolization and Chemoembolization" section.
----------------------------------------------------------------------------------------------------------
When your doctors talk about "burning the tumor, " is TACE what they're speaking of? This is one way that HCC can be treated. If this is not the procedure they are referencing, then you would want to know the name of the procedure so that you can read about it.
I hope the link is helpful, so sorry you're having to go through all this, and hoping for your smooth passage through these waters.
Lapis
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First, the transplant center needs to confirm 100% to the best of their ability that it is liver cancer. This is something they should be doing on a regular basis as liver cancer has been increasing common over the past 15 years. Only 2 methods are used to confirm liver disease, a special type of CT - Scan with and without contrast or a special contrast-non-contrast MRI Scan. (See the AASLD HCC Guideline for details). They also need to note your AFP level. Liver enzymes, enlarged spleen, etc. have nothing to do with liver cancer except you must have stage 4, cirrhosis caused by hepatitis C to be prone to having a higher risk of liver cancer.
You need to get a full workup to be listed for a liver transplant. This involves many days of tests of you entire health including cadio health, mental health (you will meet with a physiatrist) you will meet the surgeon, and many others that will be part of you transplant team.
You have a unique advantage if you have liver cancer. The transplant center can apply for special exception points that will get you a liver transplant sooner than you normally would. They must submit your tumor data and AFP levels so you can get these points. It is very important to get this points BEFORE being treated for your liver cancer. You can only get these points if you have a tumor 2 cm or larger. Ask about getting these HCC exception points when you meet with them. This is very important!!!
You will get 22 MELD points to start with and 3 point every 3 months afterwards. You will need to be monitored with a scan and AFP level every 3 months to maintain your points. Depending on the MELD score the TP center transplants at within a year you will have a MELD in the 30s which at most TP center will get you near the top of the transplant list.
The “burning treatment” is one form of treating liver cancer.
Radiofrequency Abolation – (RFA) therapy
In the U.S., RFA therapy has become the ablation (tissue destruction) therapy of choice among surgeons. The surgeon can perform this procedure laparoscopically (through small holes in the abdomen) or during open exploration of the abdomen. More commonly, the procedure is done without opening the abdomen by just using ultrasound or CT scan for visual guidance.
In RFA, heat is generated locally by high frequency radio waves that are channeled into metal electrodes. A probe is inserted into the center of the tumor and the non-insulated electrodes, which are shaped like prongs, are projected into the tumor. The local heat that is generated melts the tissue (coagulative necrosis) that is adjacent to the probe. The probe is left in place for about 10-15 minutes. The whole procedure is monitored visually by ultrasound scanning. The ideal size of a liver cancer tumor for RFA is less than 5 cm. Larger tumors may require more than one session. This treatment should be viewed as palliative (providing some relief), not curative.
Once a person has liver cancer, there is no cure except for liver transplant. Your liver will continue to develop tumors over time. This treatment is only used to give you more time to survive until transplant.
It is scary. I am in the same boat as yourself and I am still alive so there is always hope. You must get the best treatment you can as liver cancer is a very complex disease that only a few medical centers are equipped to manage and control until transplant.
A Patients Guide to Liver Transplant
http://www.universitytransplantcenter.com/files/Liver_Guide.pdf
Hector