Topic: My husband was diagnosed CC on his 32 years' birthday.

3 months ago, my husband was diagnosed CC on his 32 years' birthday.

At first, the docs of UCDMC told us that the Mayo Clinic is our only choice. We waited for a month to get the approval from our insurance.

Then we went to the Mayo Clinic for liver transplant evaluation. Since Mayo is not a contracted hospital of our insurance, every step needs to get an approval from insurance. We stayed there for 3 weeks, my husband was finally accepted to their protocol. But our insurance didn't give the approval for that. According to them, the protocol (liver transplant after chemo and radio therapy) is not a standard treatment for CC.

So we came back to UCDMC. I tried to persuade the oncologists here to follow Mayo's protocol. But they don't think the liver transplant is effective for CC. Anyway, they will give my husband chemo and radio therapy on Jan 23rd, and they'll schdule us to see the doc of liver tranplant team here. Hopefully everything goes well.

Re: My husband was diagnosed CC on his 32 years' birthday.

Dear Bobojie,
I am so very sorry to hear about your husbands news. This web site will be invaluable to you. Have you asked about surgical resection? Seems as if pt with ccc have a better chance with surgical resection.
Lana

Re: My husband was diagnosed CC on his 32 years' birthday.

Dear bobojie,
I am following Lana in welcoming you to the site.

I would encourage you to collect all medical records, physician diagnoses, scans, blood test results, etc.  You will want to make sure that all of this information is handed to those physicians involved with your husband

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My husband was diagnosed CC on his 32 years' birthday.

marions wrote:

Dear bobojie,   
As far as I know, at this time, the Mayo Clinic is the only place in the US who will perform liver transplants on CC patients if those patients meet specific criteria.

I was transplanted in August at University of Colorado Hospital, and I know of someone else with CC who is currently waiting to be transplanted at the Univ. of Utah.  The University of Chicago also does transplants for CC.  All of these programs follow the Mayo protocol initiated in 1993 (small tumors only, no metastases, chemoirradiation, brachytherapy, then transplant).  With Mayo's 5-year 82% survival rate, I don't see how the original poster's insuror could defend its position not to cover orthotopic transplantation for her husband because it isn't "standard," or how UCDMC could decline to follow Mayo's program because it isn't "effective."  Hopefully, UCDMC will change its position when they meet with the TP surgeon later this month.

Re: My husband was diagnosed CC on his 32 years' birthday.

Dear Lana, Marions and Gene,

Thank you for your kind words and suggestions.

My husband has a 3 cm tumor at the bifurcation, and it extends along the ducts into the liver both the right and left directions to about 6 cm. So surgical resection is not available for him.

According to my husband's oncologists, Mayo's data is the only data reported so far. They seem not to believe that and they wouldn't give my husband brachytherapy. It's so difficult for me to "push" the docs here to follow Mayo's protocol. All of them are experts, and English is not my native language, how can I persuade them?

Since our insurance is HMO, and UCDMC is my husband's assigned medical group, we can go nowhere without UCDMC's authorization. I don't know why they gave us authorization last time, but this time they want to keep my husband here. It's so frustrating, not only my husband's disease, but also all these medical and insurance issues. I only hope God will bless us.

Re: My husband was diagnosed CC on his 32 years' birthday.

Dear Bobojie,
I too am one of the youngins here. Like your husband I was diagnosed at 32 and I will not lie, it has been a difficult journey. I had a liver resection in Jan 2007. I was diagnosed really early and the tumor was about the size of a pea. I am meeting with a transplant team in Sweden (wheren I live now) next week.

I am completely terrrified of transplatation. There are so many mixed reviews. My best friend who is an oncologist was adamant I did not want one. A doctor I saw in NC was also very negative about the process. She said that the results are so good because they cherry  pick who gets to have them. That liver resection would be just as effective if there were compared like for like-tumor size, no metastises, etc. I am not so sure, the statistics on transplantation are so good. I want that for me, but now after talking to so many people I am confused. My doctor here in Sweden really wants me to have one, but the transplant team what to evaluate me more. It is so hard to make the right decision-I cant imagine what it must be like to have to involove insurance companies as well!

Best of luck.
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My husband was diagnosed CC on his 32 years' birthday.

Dear Kris,

Thank you for your reply.

I'm in a bad mood today. Because I just found that my husband's CA 19-9 has rised very much. It was 505 two months ago, was 6100 one month ago, now is 45121!

I can't help regretting that I made a wrong decision. If I didn't waste so much time on the option of transplant, he should have had the therapy three months ago.

Re: My husband was diagnosed CC on his 32 years' birthday.

YOU CANNOT BLAME YOURSELF!! My god, we all struggle to find the best solution. CC is not breast cancer or lymphoma. There is NO set regime. No A,B,C steps to follow. Most cancers have a protocol, a best regime tried and tested. We are the unlucky few. A group too small to get good scientific research statistics and with an aggressive cancer that hides until diagnosis is often too late for any treatments to work. So doctors, patients and carers wander around trying different things based on various factors. I begged for chemo after surgery, but was denied it in Sweden because "there is no scientific evidence it is beneficial" Well, guess what. There will never be scientific evidence for a patient in there 30s with Stage 1/early 2 diagnosis. Well, it looks like my cancer has returned (though not yet positive) and I wonder what it might have been if I would have had chemo. But that is not what happened. I need to stop thinking about it, like you need to stop worrying about your decision. Both were made with the best of information and the best of intentions.

You and your husband are doing the best you two can. HAVE FAITH. If he is being considered for the transplant, than it shows the cancer has not yet spread. That is a wonderful thing-a very positive mark. Your husband will fight this and you will be at his side. It is ok to be angry. I cry and I sometimes cannot believe the potty mouth I have when the frustration reaches a high point. But, there is NO TIME for regrets. You sometimes need anger for the fight, but regret is an energy zapper that cannot be allowed. We are all human and we will make mistakes, and who says that transplant is a mistake?

You are in my thoughts.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My husband was diagnosed CC on his 32 years' birthday.

Dear Kris,

Thank you for your comforting words. I've contacted my husband's oncologist. His chemo-radiation therapy will start from tomorrow. Hopefully it will work. God bless us all.