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1913232 tn?1361457689

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?
12 Responses
446474 tn?1446351282
If it is HCC, liver cancer, cancer should be your primary focus. It will be the doctor's primary focus.Liver cancer is the most life-threatening thing you have to worry about. Not hep C, not you cirrhosis. If not treated properly, liver cancer, will be deadly in a short period of time. Months rather then years.

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


Avatar universal
Hang in there Un...you need to speak to one of the pros.  Bump
683664 tn?1330969924
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
Avatar universal
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...
163305 tn?1333672171
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

163305 tn?1333672171
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?
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