Topic: Finding the right surgeon

I would like to share a bit of good news in the fight against cholangiocarcinoma.

In May 2012 my 58 yr. old husband was diagnosed with Cholangiocarcinoma/Klatskin Tumor.

One of his doctors at our local hospital tried twice to place stents into his bile ducts, both times were unsuccessful.   We were referred to Dr. Alexander Rosemurgy who at the time was at Tampa General Hospital but is now at Florida Hospital in Tampa.

Once at Tampa General Hospital my husband went through many tests and had stents with two external drains to help the liver drain. On our first meeting with Dr Rosemurgy he swiftly described my husband’s Bile Duct cancer as terminal and surgery was not an option. He estimated survival time to be 9 to 18 months and guessed that he may have had this cancer for as long as 5 to 10 years or more. As he went to leave my husband’s hospital room he stated that he wanted to take home my husband’s scans and file and look at one possible option and discuss the next day.
The next day Dr. Rosemurgy explained that there is a procedure that basically blocks off one side of the liver therefore allowing the other side to hopefully grow and hopefully allowing surgery to be an option.
In my husband’s case they would block off the right side of the liver (embolization) with hopes his left would grow.  We knew there was nothing to think about, it was the only option. The very next day his embolization was done along with cardiac testing to ensure his heart was in good health for such a detailed surgery.

After six weeks we were told the left side of the liver had grown, just not quite enough to where Dr. Rosemurgy felt that surgery would be an option. So we were sent home for another six week period at which time the c-scan showed no further growth. With surgery not an option still Dr. Rosemurgy didn’t give up he scheduled the very next morning a re-embolization of my husband’s right side of his liver. He had noticed the right side showed signs of trying to regenerate so that is the reason for repeating the embolization. After another 6 week period sadly the s-scan showed very little growth but Dr. Rosemurgy who never gave up on my husband left the decision to proceed with surgery to us.

So on Tuesday Oct. 16th 2012 my husband had 5 hours of surgery and when Dr. Rosemurgy came out to meet with me his exact words were “I could not have asked for any part of his surgery to go better”, “all margins are clear”.  He explained that he himself could not even sleep the night before because he had never done this surgery with leaving a patient with so little liver left. My husband’s liver prior to surgery was estimated to be 2400 cc’s and after surgery to be 400 cc’s….It  would just be a matter of finding out if the liver is able to perform over the next few days or week after surgery.  They did not have to do a complete Whipple procedure; they removed the right side of the liver, most of the bile ducts and some of the left side of his liver. He basically rebuilt his bile ducts to make a new path for the liver to flow.

Well after 5 days in ICU and about 6 days on a regular ward we were told that even the testing on microscopic margins were clear, the cancer never moved from his bile ducts and he was given a complete clear on all margins and lymph nodes.

Today being a little over 6 weeks since surgery my husband improves more each day......He will have chemo just before or after Christmas to ensure nothing was missed…..So please make sure to get the second or third opinion and make sure it is with a specialist in the field for Cholangiocarcinoma. I can tell you we owe everything to Dr. Alexander Rosemurgy who never gave up…….

Re: Finding the right surgeon

Dearest Carol, first I want to welcome you to our remarkable family and then CONGRATULATIONS on your Husband's successful surgery. Talk about a story filled with hope and miracles. Perfect example of why we suggest 2nd and 3rd opinions. I would say your family has received the best Christmas gift it could ever hope for. Wishing hubby a speedy and successful recovery and please keep us posted on his progress. I am over the moon with your post!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Finding the right surgeon

Hi Carol,

Your husband's story has to be one of the best I have heard in a very long time! How wonderful and I hope your husband is feeling great for the holidays. I think he truly has been blessed with a miracle. Take care.

Love and hugs, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Finding the right surgeon

That's a wonderful story!! Thanks for sharing.. It's very inspiring of hope!

Willow

Re: Finding the right surgeon

How wonderful!  Thank you for sharing your story.  As is said on this site often, that second (or third or fourth) opinion is well worth getting.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Finding the right surgeon

Carol, welcome to the forum. Your husband's story is remarkable!! Thanks for sharing.

Re: Finding the right surgeon

Carol...I would like to echo everything said so far and wish for continued success in the recuperation process. Congratulations.
Hugs
Marion

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: Finding the right surgeon

Carol...I would like to echo everything said so far and wish for continued success in the recuperation process. Congratulations.
Hugs
Marion

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: Finding the right surgeon

Carol...What a great story with a wonderful outcome! I to was able to have surgery only because I did seek  a second opinion....this cancer needs to...has to be treated by someone with much experience.....wishing you and your husband nothing but the best!! Keep posting here we love it!
Nancy

Re: Finding the right surgeon

Congratulations--what a wonderful success story. I wish all the outcomes were as positive. Maybe one day...