Please Help! How Do I Find The Best Treatment For My Dad???

I have posted previously regarding my Dad (age 64), who was recently diagnosed with cholangiocarcinoma. His main tumor is 10 cm and it was deemed inoperable. Although I was not at his appointment, the oncologist told him that any treatment would just "buy him time". He is scheduled to have radiofrequency ablation (on the 11th) and radioactive sphere treatment soon after. We are trying to get him into a local cancer center for a 2nd opinion (Moffitt in Tampa, FL), but so far they can't get him in before his scheduled surgery. My Dad and stepmother are insistent that their surgeon is experienced (he is supposedly the 1st to perform the radioactive sphere treatment in FL), but I'm still very nervous. I guess I'm wondering if there is anywhere I can go to find a list of experienced surgeons - specifically for cholangiocarcinoma treatment. Have any of you had treatment in Florida? Also, I would like to contact Sloan-Ketterling and some other well known institutions, however I'm wondering if we can send films, etc. or does he need to travel to the different hospitals to get opinions? All of this is so overwhelming. I am trying to do my best to help him, but I'm not sure where to go from here. Like I said, he's already scheduled for the 11th. One other person from this board contacted me and said that she strongly opposed RFA, since it caused her Dad's tumor to grow. Do any of you have any experience with RFA or radioactive spheres?

Please help! Thank you.

The only cure for this cancer is surgery. Its true that anything else is just buying time. Given that, I would at least try and see if another surgeon felt the same way. Moffitt is a great hospital. Surgeons are different and opinions vary. It sounds like you would have to convince your father of this since you are not in charge of his care.

Mayo has a hospital in Jacksonville, FL. I would go see them for a second opinion - Mayo is great about getting people in to see a doctor. I am pretty certain, however, that you can have your dad's doctor send your dad's records and slides to places like Sloan Kettering/MD Anderson, etc for additional opinions. I imagine your dad's doctor knows how to do this. You need to do everything in your power to convince your dad to seek several opinions regarding his treatment. I'm not doubting the doctor's abilities. However, this is a rare cancer, and you really want an opinion from a doctor who sees many of these cases. There is no doubt in my mind that the doctors at the top cancer institutes in this country treat many more cases of cholangiocarcinoma than your dad's doctor.

Prayers are being said for your dad.

i agree with the other people who are advising you to seek further opinions - this is such a rare type of cancer - it only affects 1 in about 100,000 people. It is vital, therefore, that you find someone who is really experienced. In the States I contacted (on my Dad's behalf) Mayo Clinic and Sloan K. We sent my Dad's films on CD rom to them. (There is usually no need for your Dad to travel). The only surgeon we found willing to operate was Prof Lodge in the UK, we were referred to him after having consulted Prof Roger Williams (who treated George Best). It is true that surgery is the only curative option, chemotherapy, ablation etc can only prolong life, however some people have had a good response to chemo with shrinkage of the tumor which can then be removed surgically. This disease can be beaten - you must get second opinions. All the best, take care

Jules

I totally agree. I wish that he could get several other opinions prior to his surgery (RFA and radioactive spheres), however that's not an option at this point. He is set on having the procedures done on Wednesday, however he wants to go on to other centers for their input afterwards.

Thank you to all who have helped answer some of my questions. I hope that your prayers are answered for your loved ones.

I tried e-mailing you for Dr. Lodge's address, but it didn't go through. I'll try again.

I called Sloan-Kettering and they told me that he had to come in. The person I spoke with said that they don't do record consultations.

I was talking to mayo clinic and they said they don't do record consultations. Does anyone know any names of specific doctors at mayo who would look at records or other doctors they reccomend. My dad's current doctor said they couldn't do anything for him but i want a second opinion to make sure. Please help me !!!!!!

Hi,

My best friend, who is 39, got diagnosed in June of 2005. We live in the Seattle area. The news for her was quite grim. We refused to accept the Dr.'s view of " inoperable." By the grace of God and an angel of-a-man named, Dr. Wallis Marsh, at the University of Pittsburg, he agreed to perform this "inoperable" surgery. April, my dear friend, is alive today because of Dr. Marsh. The surgery was very long, scary and definately took it's toll on her. He removed 3/4 of her liver, her gall bladder and many other areas that the cancer had spread to. He was able to get all of the cancer removed. He wanted her to undergo further chemo and radiation but the surgery had knocked the wind out of her sails so much that she didn't feel she had the strength to endure anymore. The surgery was in July. The caner has been relentless and has reared it's ugly head yet again in Dec. It's hard to stay strong, hopeful, when most everything you hear is not good. BUTTTTTTTTTT I will not give up! Thanks to that angel, Dr. Marsh, April got to celebrate her 39th birthday. She got to enjoy Thanksgiving in Mexico with her husband and 4 year old son. She was blessed at Christmas with time spent enjoying family and friends. We went to see the Nutcracker, it was WONDERFUL. She was able to join me at my 40th birthday party. She is now in Hawaii with her husband. Without Dr. Marsh and his willingness to not give up, April would have been gone within about a month of her diagnosis. She was stage 4 by the time her cancer was discovered. There is also a Dr. with Cancer Centers of America, not sure of his name, in I think, Illinois, who deals with this beast. Anyway, time, has been our greatest gift that Dr. Marsh has given us. He has allowed us time with our precious April. Somehow, some way, all of our prayers for a miracle will be answered. The key is to remove any doubt in order that room be made available for the miracle to be let in. Good luck, hope this helps you. If you call Dr. Marsh, he will know who April is. Guaranteed. He is AMAZING!

God Bless you and your family,
Suzanne

I have not heard of Dr. Kelley. Where is he located? Any additional information would be greatly appreciated.

Thanks!

Andrea