Liver Cancer when a Transplant is no longer an option

marriedblnde

I'm not sure what I am asking for, all I know is that my husband an I are at a loss. My husband was diagnosed Mar '05 with Stage II primary liver cancer. We sought opinions from a number of doctors including UCSF regarding cutting it out. Due to the location, on the top of the dome and down through the center looking like a carrot, and with some scaring from HEP C, surgery to remove was not an option. He was however a candidate for a transplant.
In May '05, my husband AFP (alpha feto protien test) was at 3400. So he underwent Chemo embylization. He responded very well to the chemo. By July his AFP was at 16. We went through all of the required hoops to complete all the tests and he was placed on the list with a meld score of 22 as of Nov '05. Gradually, that AFP was climbing, 900 in Nov and 3000 in Jan '06. They scheduled a Quad scan which they said showed nothing new. They suggested a MRI for more detail. My husband had that MRI last week. We were called in an informed that there are now 9 new tumores surrounding the original tumor. With this being the case, he is no longer a successful candidate for a transplant.
We are beside ourselves. We feel that they are tossing him to the side. They have not seen any sign of spreading. So how can they just seal his fate??
We are in search of options.

We know that the chemo, radiation, are not cures.
We are searching for information on transplants in other areas of the country an even other countries. I am a potential live donor for my husband.
Is there a place that doesn't look at the Babe Ruth senario ?

Any information or suggestions would be appreciated.

MarriedBlnde

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

I am very sorry to hear about your situation. UCSF is an excellent medical center and has an active liver transplant team with experience. Without knowing the details of the imaging nor current stage of the cancer, it is difficult to determine your options. Liver transplant, as I'm sure you know, is a high risk procedure and is limited due to resources especially viable livers. All transplants in the US are under the control of a national organ transplant network. This network sets rules as to who is considered a transplant candidate and generally the same rules apply all over the country. Yes, a few exceptions occur, but for the most part it is the same. Because there are so few livers, the feeling is to transplant conditions with the highest likelihood of long term success.

Early types of liver cancer can be transplanted, however once a cancer advances and begins to spread so does the risk of recurrence. Therefore, advance cancers are unlikely to be transplanted because the chance of the cancer spreading to the new liver or to other organs is high. Thus it now becomes a question of allocation of resources - Do you put a liver in a patient with a high likelihood of cancer recurrence ie likely to pass in a few years versus in a early cancer likely to survive 20+ years.

2nd point is that a liver transplant and all transplants require immunosuppresive therapy so the patient does not reject the liver. If you suppress the immune system in a patient with cancer that exists in the body, the cancer will grow even faster. This has been documented and people on long term immunosuppresive treatment have higher risks of cancer for this reason. So, I assuming her husband's cancer has advanced to a point that the likelihood of cancer beyond just the liver is high. A liver transplant would help remove the cancer in the liver, but the cancer outside the liver would grow even faster.

I hope this type of information helps you understand the complex decision making behind an organ transplant. However, there are treatment options that can help people live longer and with a better quality of life and I would discuss this with your medical team.

RLee, MD
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RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

marriedblnde

Thank you, for the information..I did not think about the after treatment for the transplant..It 's just very difficult t accept this descision thet was made. We just can not allow this to occur. Yes, there is a fine line drawn that UNOS does not cross regarding their criteria. However, we can not dismiss the the fact that there is a grey area that is there. No one person is the same and not every case of cancer follows the exact course or time line. Therefore, I can not, and will not believe that the current decision is the right decision.

I was a potential live donor for my husband. So the fact that there is a demand for livers verses success rate, is a mute point.

My husband has stage IIIA liver cancer...with no current sign of spread

He is not beyond saving!!
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Thank you
MarriedBlnde

brainman

The only other option (within standard medicine) is to seak a 2nd opinion. I hear that you don't want to give up to soon and my heart reaches out to you. I do hope that your husband can find a successful treatment.

My prayers and thoughts are with you and your husband.
_________________
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/

marriedblnde

Thank you for the heart felt comment...We did receive some possible answers to a transplant..The transplant coordinator that we have been working with at our HMO..gave us some information regarding a gentleman with the same condition as my husband. Apparently this gentleman was dealing with liver cancer for 4 years and UCSF finally told him his condition no longer met the criteria for a transplant candidate. He resorted to China where he has had a sucessful transplant in October of 2005..yes, 4 months ago. The coordinator put us intouch with him. We just got off the phone feeling a bit rejuvinated..He had nothing but good to say about his expierence. He said if you can over come any moral issues you might have about China's current organ harvesting practices, an if you are pro life (who wouldn't be.) Then it is a great thing. Your expenses are around $100k which includes your surgery and your recovery. We are planning to sit down with he and his wife and discuss this in more detail. This is definately something worth considering
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Thank you
MarriedBlnde

marriedblnde · Posted: Thu Mar 16, 2006 11:51 am Post subject: Liver Transplant abroad

Well after being in Shanghai for 2 weeks. I am proud to say my husband was able to do what American doctors told him he couldn't. He has had a successful liver transplant.

With still no sign of spread, prior to the transplant. We will return to the states in about 3 weeks, and my husband will undergo preventative Chemo.

I am glad that neither my husband nor myself were narrow minded, to the point of dismissing all possible options. I now have a husband still with me, whom I love dearly. My 5 year old son and my 3 year old daughter still have a father's lap to sit in.

Americans are clueless when is comes other coutries' capabilities. Either that, or we choose to be ignorant, and would rather believe that the US is only the best. Well we are all quite mistaken. Everyday life here is very simple here in China, an in many ways they are more advance than us.

If there is one thing that I have realized. Is that the medical in the states, spends more time consulting each other on treatments than, treating the patient.

I hope this helps those people that have been told, your tumor is to large and we have to yank you off the transplant list. That is not the end. It never is. Doctors can not take away your life. You make that decision!!

The criteria for a transplant whether set by UNOS or by the various Transplant Centers accross the states. Is not set to be favorable or designed for Cancer infected patients. So if you think for one minute that the odds of being successful in waiting for a cadavor organ, think again.

My husband was in the race against time due to his cancer. We reallized that cancer has a head start in this race. So rather than continuing down the same path, where cancer was so far in front it was not in sight. We were able to find a shortcut, on our own. So at least now, we are leading the race!!

If anyone would like information or has questions. I would be happy to share our journey with you
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Thank you
MarriedBlnde

Diane12 · Posted: Thu Mar 16, 2006 2:22 pm Post subject: Re: Liver Transplant abroad

Marriedblnde,

Thanks for sharing your story - your's and your husband's fight and determination to never give up is such an encouragement to those of us here and our loved ones, who are battling cancer.

All the best wishes for a happy and healthy future...

Thanks again - you inspired me with your attitude!

missumom · Experienced user Joined: 05 Jan 2006 Posts: 65

Hi Marriedblnde,

Your husband's journey to fight the cancer battle is very inspiring to me. I totally agree with you that doctors here in North America waste precious time consulting with each other rather than actually treating the problem. A lot of time is wasted waiting for tests to be scheduled, results to come and doctor's prognosis. I also think that doctors here are not aggressive in their treatment plan and if you're just an average Joe, they give up on you much faster than if you were a doctor/politician/actor whatever. It is also my opinion that doctors are relunctant to operate because of healthcare costs. I only wish that I knew this information when my mom was diagnosed. I have so many questions that I'm sure others are also curious about and I hope you will find the time to reply.

1) How did you start your research in liver transplant outside the States? Was it through internet?

2) Why Shanghai? Do they have a good reputation in liver transplant?

3) How did you know which hospital to choose?

4) What was the process in this journey? Meaning, you had your husband released from the hospital. Did the doctors have to give him an okay to travel? Did you need any doctor's referral? Who did you contact in the Shanghai hospital?

You have opened up a whole lot of hope for cancer patients and I know that this option is not for everyone, but at least, it's an option. A lot of times, cancer patients and their families are left hopeless, but with your story, you've given them another option to fight.

If all ends well, you might want to share your story with the media. More people should really know about this. Very Happy

God bless,

snower06 · New User Joined: 25 Mar 2006 Posts: 3

Hi missumom:

My husband had been waiting for liver transplant in Canada for about one year. Finally he got liver transplant in Tianjin in Jan 18, 2006. It is very successful. The Transplantation Center in Tianjin is the first hospital to perform liver transplantation in China. They had performed transplant 1400+ by June, 2005. I recommend you to discuss patient's medical condition with doctor first. If possible and time allowed, visit hospital and meet other patients. Most of hospitals in China have website but they are written in Chinese.

If you would like to know more about it, please email me your questions to sherry2shuang@yahoo.com

marriedblnde · Posted: Mon Apr 03, 2006 2:41 am Post subject: transplant sucsess so far

hello all,

I am married blnd's husband, and just got out of the hospital today, I feel great.

I have a cancer free liver now and a second chance, I am blessed!
I wanted to write to let all of you know there is hope, I am not out of the water yet but I feel I have a much better chance, I wrote a jornal evrey day of my experiance's. And will publish it when I return to the bay area, I hope it will help other's.

Also please read my blog page and reply, http://newfilter.blogspot.com

I have all the contct info you may need, you can also e-mail me at e_g_deleon@sbcglobal.net I would be happy to help anyone who need's It,alway's keep a posative attitude,if we all work together we can make a differance.

God bless you all

My prayer's are with you
Eric De Leon
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Thank you
MarriedBlnde

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