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

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

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.

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