Where to Find The Best Care/surgeons For Bile Duct Cancer

Maria, we also live in the DC area. My 40 year old husband was diagnosed with cholangiocarcinoma (Bile Duct Cancer) in Sept 2004 and had surgery in October which removed part of his bile ducts and 60% of his liver. They did a combination of radiation and chemo in Jan and Feb 2005. They had hoped that combined with the surgery would take care of it all. Unfortunately another tumor showed up in March 2005. He will start another round of a combination of chemos (FOLFOX 6) next week. He is being treated at Bethesda National Naval Medical Center which is connected to NCI and NIH. I believe they have a couple of trials that we might try if this round of chemo doesn't shrink the tumor. We also went for a second opinion at Georgetown Hospital. We were told that Dr. John Marshall there is one of the best GI cancer doctors in the mid Atlantic. He recommended the treatment we start next week and also said he has options if Bethesda runs out of things to try. There are several ongoing clinical trials there. I have a friend whose Dad was treated by Dr. Cameron at John Hopkins in Baltimore. My understanding is that he is a surgeon (and one of the best around) but I'm not sure if he can provide treatment beyond surgery. Does anyone know if he does? Also, does anyone have any suggestions for treatments and treatment centers or doctors? We want to try everything possible since the diagnosis for this disease is so bleak. Thank you.

Thank you Susan

I have forwarded your important info to my brother in helping to find the best place for treatment...

It sounds as if your husband was a soldier, the first Iraq conflict? My Brother was also in Iraq, just wondering if this is a result of some sort of chemical exposure.

Stay Strong
Maria

Maria,
I hope the information helps your brother. My husband was also healthy - something like this is such a shock. My husband is still on active duty in the Army (18 years). He did not serve in either war in Iraq but served in Just Cause in Panama. There is another message board at this site that addresses the question of soldiers getting this cancer. I believe the subject is Viet Nam. It might be helpful to look at that message board also. It seems very odd that so many young military guys are getting this disease. Maybe it is just coincidence but who knows. Good luck with your fight. I hope your brother gets the care he needs. Susan

I understand your feelings and am sorry that you both have to go through this. My husband is 45 and diagnosed November 2004. What a roller coaster ride it has been. By posting a message to this site, you are already headed in the right direction. Start searching and researching everything you can. It's overwhelming and frightening but knowledge is power. Talk to people, post messages, email specialists - do what ever you can. Find your local support groups.

My husband went to UCLA. They are great but his liver resection surgery deemed unresectable. His stage has advanced. He is receiving radiation but can not have chemo because his bilirubin count is too high. He was accepted as a transplant patient but he won't live long enough to get to the top of the organ list. We must find a living donor.

I am buried in information but email me if you want to share any of it.

PS. Ask a lot of questions - I have found that there are many different aspects of this cancer & no two people have the same ordeal.

Hi Susan

I wanted to thank you for the info on Dr. Marshall we are trying to get in to see him now, I wanted to know how your husband was doing, and where the second tumor appeared.

My brothers tumor started in the bile duct and spread to the outside of the liver ..but does not appear on any scans since the spots are very small, the cancer is extrahepatic.

Was it the same for your husband.

Thanks
Maria

Hi baldnblonde

The info is truly overwhelming we are searching and researching...

My brothers cancer started in his bile duct and has traveled to the outside of the liver, he had a first surgery which left the tumor and took out the gallbladder.

We are trying to get info but some hospitals we have contacted are telling us the only treatment is chemo..we of course do not want to start and end at this point...any reccomendation of doctors would be a great help we are trying to get some cross referance of names, since it takes forever to get an appointment...I feel like I am on a deadline here and can not get the info we need...

We are head strong girls and not about to take no for an answer...
Thanks so much for any inf and I hope your husband can find a donor..do not give up...

Maria

Hi Tina

The info is truly overwhelming we are searching and researching...

My brothers cancer started in his bile duct and has traveled to the outside of the liver, he had a first surgery which left the tumor and took out the gallbladder.

We are trying to get info but some hospitals we have contacted are telling us the only treatment is chemo..we of course do not want to start and end at this point...any reccomendation of doctors would be a great help we are trying to get some cross referance of names, since it takes forever to get an appointment...I feel like I am on a deadline here and can not get the info we need...

We are head strong girls and not about to take no for an answer...
Thanks so much for any inf and I hope your husband can find a donor..do not give up...

Maria

Thank you Susan

I think that this website is fantastic and the more info we get the better. We are at trying to understand this type of cancer and how it is treated, which at this point seems many different directions...

Please keep us updated with your husbands progress ...and again the type of chemo you mentioned I found was also used on another patient..

Good Luck
Maria

Mary, my husband has this rare type of cancer. Unfortunaly his is not operable. We have been attending MD Anderson in Houston, Texas for the past three years. They are supposed to be "the best in the world" Good Luck to you and your family.

My wife was diagnosed with this disease 2 months ago. I can relate totally to your fear. It gripped me for about a month. You get used to it if you direct your energy positively to beating the disease - very hard to do, but not impossible. There are people out there who have survived 4 years and more with it - and with decent quality of life. Two that I know of are still going. You need to look at the combination therapies involving multiple chemo drugs administered at lower doses. I have a collection of internet research that I have compiled over the last 30 days, from reputable peer-reviewed sources. It would save you hours and give you a lot of ideas. Do not give up. Your husband's youth is a plus and the fight is not over. It is just beginning. Regards,

Jeff