1 (edited by marions Mon, 03 Jul 2006 13:29:50)

Topic: The liver resection not thought possible

My husband is recovering nicely from the resection.  He is eating normal, weight gain is slow but steady and his strengths has returned to almost normal. And we were told that none of this was possible.
The first surgeon   t h o u g h t   (so he said) that the tumor had wrapped itself around the hepatic artery.  Consequently, he was sure a resection was not possible.  He felt assured of his opinion since he as he says, sees many cc patients.  We were referred to an oncologist who gave my husband 6 months to live without chemo or 12 months with chemotherapy.  We then met with a local oncologist who was prepared to try a more aggressive approach however, before doing such referred us for another opinion to a surgeon who is well known in this country.  This doctor also felt that a recection was not in order since the tumor had spread too far, and that surgery was too invasive making a promising recovery unlikely.   In order to remove the cancer too much would have to be cut out not leaving enough liver for my husband to live with.  He also has seen and treated many cc patients.
Dr. Jenkins proved them wrong.  By looking at the scans Dr. Jenkins detected an abnormality with the hepatic artery which in turn worked in my husband's favor.  He also assured us that if needed  he would shorten the hepatic artery and portal vein however, it was his opinion that the tumor was one inch away from both.  He also told us that the left portion of my husband's liver had been atrophied for quite some time possibly two years, and that the right side of his liver had taken over the function quite nicely all along. 
The surgery lasted 5 hours.  Dr. Jenkins removed the left atrophied portion of the liver, basically re-plumbed my husband and cleared the area of all the lymph nodes of which one closest to the tumor contained some cancer cells.  We are well aware of the possiblity of this cancer returning however, we feel to be in a better position now. 
Unfortunately, I believe that the ego of some doctors can be deadly to patients.  Neither one of the previous surgeons gave us the slightest hint that there may be someone out there who may see things differently, someone with the qualifications of Dr. Jenkins who has performed 200 bile duct cancer surgeries so far.  Both of them felt that their opinion was the absolute.  Yes, we don't know as to what the future will hold but at least we have a  chance now.  I will gladly pass on more information if requested.

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Re: The liver resection not thought possible

Marion,

What does your oncologist suggest after recovery from the surgery?  Will you try chemotherapy, or something else or will you wait to see if there is any growth before deciding?

Re: The liver resection not thought possible

That of course is something we are still battling with.  My husband will have a CT scan every three months in addition to the blood test.

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: The liver resection not thought possible

marion,

we had an identical experience to you.  My dad had 1 failed 'attempted' liver resection in august 05.  we were told that there was no way the tumor could be removed as it was too close to a major artery.  We sought a second opinion and we were referred to prof peter lodge here in the UK who removed the tumor - "tumor peeled away easily from artery" - the tumor should have been removed first time round, the first surgeon told us he had the expertise.

Unfortuantly my dad has suffered a recurrance 6 months post op and is now on chemo, however he is doing well.  It was the tumor in the liver that was causing all the horrible symptoms - now that that is gone he is able to lead a almost normal life.

We also have noticed that there is alot of professional rivalry between drs - often surfacing in ways which is detrimental for the patient.  (one oncologist we saw was perticulary scathing of the effectiveness of the surgery).

we admire peter lodge so much and we are so grateful to him.  Out of all the oncs/surgeons we have met along the way he has been the only one who has been willing to put himself out and work hard to help us.

As for the recurrance - we live a long way from where peter lodge is based so a dr down here diagnosed the recurrance.  we felt as though he was smug about it - (one of the pessimists).  My dad is gaining weight and doing well..i am starting to wonder if a recurrance has been misdiagnosed (we are looking into it now).

I can understand how you feel about dr jenkins, hopefully you can get him to do the follow up with your husband.  (beware of the professional rivalry).

As for my dad - if it is a recurrance i am trying to line up some alternatives to chemo - we are going to meet with someone concerning cancer vaccines next wk.  the tools are available now to manage cancer as a chronic illness - something that people can live with for yrs.  We just have to convince the people researching and about to start the trials that cholangio patients deserve a look in too.

wishing your husband all the best with his recovery,

jules

5 (edited by marions Sat, 08 Jul 2006 18:12:01)

Re: The liver resection not thought possible

Jules,
Dr. Jenkins is doing follow up for my husband.  CT scan every three months in addition to a blood test every six weeks.  Though the detection of recurrence of this cancer is difficult to diagnose, he is truly the one we trust.   My husband will be under care here locally also. 

I wonder often about physichians linking to this web site since so much valuable information shows up.  Some of our doc friends are doing it already.  Though I have poured over tons of studies in re: to cc, I find the info here invaluable.

Wishing the best for your Dad
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: The liver resection not thought possible

I've heard of Dr. Jenkins before from this board, but I can't remember where he is.  Would someone be so kind to tell me where he is and how to get in touch with him?  My friend has been told that she is not a candidate for resection, but after hearing these stories, I would like for her to consult with him.  Thanks!

7 (edited by marions Tue, 18 Jul 2006 11:54:59)

Re: The liver resection not thought possible

Dr. Roger Jenkins
Lahey Clinic
Burlington, Mass
781     744-2500
Julie Doyle
Administrator

There is a web site for the Lahey clinic on which you will find more info on Dr. Jenkins and other phone numbers.
Good Luck
MarionS

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: The liver resection not thought possible

Thank you so much for your response, Marion.  My friend Pat is at MD Anderson today having a CT scan after 4 rounds of chemo.  Depending on what they are told, I will certainly have them contact Dr. Lahey if there is any chance that the tumor has shrunk and she could have the surgery.  I find this website invaluable - thanks to everyone for sharing their experiences.

Kap

Re: The liver resection not thought possible

Hi my name is April, even though we know nothing about one another, I am so happy for your husband. Did your husband have bile duct and liver cancer? That is what my mother has. She was also told she was not a candidate for a resection.  your help would be greatly appreciated

10 (edited by marions Sat, 05 Jul 2008 19:08:29)

Re: The liver resection not thought possible

April,
yes, my husband had bile duct cancer.  In his case the constriction of the tumor (Klatskin) caused one portion of the liver to atrophy.  Although, the resection was successful my husband passed away 6 months post-surgery.  Many times I have been asked as to whether I had any regrets in re: to his resection as ultimately my husband did succumb to this cancer.  My answer is such:  It was my husband's choice to undergo the procedure and I supported all of his decisions when it came to fighting this cancer. I do believe however, that due to the resection my husband was spared the excrutiating pain so many patients are experiencing although, he had severe nausea and vomiting until the end.  April, each and every case is different therefore, staying hopeful and optimistic is the key when dealing with any illness and of course, informing yourself to the utmost. That will help your Mom make informed decisions. in re: to how she would like to continue to address it.  You are a great support to your Mom.  She is fortunate to have a daughter such as you who is searching for answers.
Wishing for the best,
Marions

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