Topic: If your told your unresctable....

I've never poster before and I have not gone through the formal introduction of myself or my husband David that has cholangiocarcinoma. I'm sitting in the waiting room of New York Presbyterian Hospital as Dr. Kato finishes his ex vivi resection attempt.  It can't be done because the cancer has grown into his abdominal wall. 

I write this today to simply state that if you or your loved one has been told that they are not resectable in the traditional surgical way please seek out an ex vivo surgeon like Dr. Kato who agreed he could do the surgery but only via ex vivo because it could not be done any other way.  Today it could not be done because the cancer advanced more than the diagnostic imaging showed. My husband was diadnosed in September 2011 at The University of Chicago where we had been informed it was not resectable, we then went to Mayo and told the same.  We then saw Dr. Brems who attempted a resection and could not do it but did plan on attempting again after chemo and radiation.  We did the chemo and radiation. Later he decided against it. We went to Northwestern, Johns Hopkins and then my husband gave up on wanting to seek any other appointments.  He agreed to have me send the records to Dr. Kato who's name I obtained from this site from Jim and Kim.  It took too long doing it that way even though the result was positive in that he agreed and felt he could do it.  We lost valuable time sending records by mail, then waiting for the agreement that he thought he could do the surgery.  Then more lost tme for the consult and eventally the wait to get on the surgery schedule. 

My advice, don't take no for an answer but once an expperienced center tells you no seek out an ex vivo surgeon.

Kathllen

Re: If your told your unresctable....

Dear Kathllen, welcome to our remarkable family but sorry you had to find us. While I am happy you found and used Dr. Kato I am truly sorry about the outcome. Has Dr. Kato talked to you about what may be done next? It proves once gain that knowledge is powerful as are other opinions although we don't always know the outcome. Katie, be strong and please let us know how you are going to proceed.

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: If your told your unresctable....

Kathllen.... I want to thank you from the bottom of my heart for sharing your experience with us.  Please know that I am sending all my love your way.
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: If your told your unresctable....

Hi Kathllen,

Welcome to the site. So sorry that you had to find us all and I am sorry to hear about your husband David. I so wish that Dr Kato had been able to give you much better news today, but as Lainy asked, what has he said to you about other treatments. This is such tough news to hear, but please do not give up all hope. We are all here for you and will help as best we can. We know what you are going through and we care.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: If your told your unresctable....

Kathllen,

I am sorry we have to welcome you to the forum under these circumstances, and I am so deeply sorry that Dr.Kato could not proceed with the ex vivo surgery. Thank you so much for gathering your strength to share your experience with us.

Hugs,
Eli

P.S. To our members who don't know what ex vivo surgery is, here's an article in NY Times that explains what Dr. Kato does.

http://www.nytimes.com/2009/12/15/healt … wanted=all