There Is Help To Be Found

I know how awful this decease is - so just wish to pass on some positive experiences.  

My mother in law, aged 62, was diagnosed with Klatskins tumor in beginning of December 07. At that time I posted a question on this message board asking for help.

Leonard from Alamo replied and recommended contacting a surgeon by the name of Dr. Ryotaro Hirose at UCSF - which we did. The doctors in Denmark - where we live - had at that time given up curative treatment for my mother in law. But after having seen her medical records and CT-scans Dr. Hirose had a different opinion and he offered her surgery at UCSF in beginning of January. At the same time though he also recommended us to contact a clinic in Berlin - because treatment there would be more convenient for my mother in law.

We contacted this clinic on December 23rd and my mother in law was within a few hours after their receipt of her medical records offered treatment from January 2nd. The leading doctor there is named Dr. Peter Neuhaus - at the clinic is the "Clinic For General, Visceral And Transplantation Surgery" - at Campus Charité.

My message is that - from a situation where we felt things were looking hopeless - the advices and responses we received from first Dr. Hirose and later from Dr. Neuhaus have been just fantastic. We are very, very grateful for all the help we have received from first Leonard and later from Dr. Hirose and Dr. Neuhaus. There is help to be found!

My mother in law had surgery this Monday in Berlin. Dr. Neuhaus and his team performed a liver resection of nearly 80% of her liver and "reconstructed" her bile ducts. Before this the doctors had prepared the operation by making an embolisation of the right hand side of her liver - initiated from beginning of January.

The surgery went well - as far as the liver resection and removal of the primary tumor is concerned. She is now in recovery. But - and it seems sadly that there is often a but with this decease - cancer was also found in 4 and possibly more lymph nodes. This spread is not good news!! However still we believe that the surgery will benefit her and we hope that something can be done to the possible further spread of the cancer. In case she had had no spread - her chances of full recovery would have been very good. And this the important message we can pass on - if surgery is a possibility it is vital that this is performed as quickly as possible and by the most qualified surgeons.

Now we prepare to help our mother in law/mother to fight the next battle. Should any one have some good experience with chemotherapy or other treatments in this situation - we will be very happy to hear this.

For your information Dr. Hirose can be contacted at phone 001-415-353-1061 and Dr. Neuhaus at phone 0049 (030) 450-552 001.

All the best.

Ken

Dear Ken,

This is Leonard from Alamo, California.  I want to thank you for all the kind words directed towards me and especially towards Doctor Ryotaro Hirose.

Needless to say Dr. Hirose is a very special person in my wife's life as are all the doctor's at UCSF Medical Center that currently care for her when needed.

I am very plesed to hear the surgery was successful as far as removing the Klatskin Tumor.  As you know, my wife went through the same surgical procedure.

At the time of surgery, Dr Hirose saw 2 lymph node infected and removed them. Three years later, after many CTscan's they found a small 3cm mass in one more lymph node.  This scared the hell out of us. At the time of surgery, the mass was micro size and was not detected by the standard CTscan.  When the CTscan did see the mass it was 3cm...not that big, but cancer in any size is big.  My wife's Oncologist Dr. Andrew Ko at UCSF (also an excellent doctor) arranged a PET scan for Karen. They wanted to make sure there were no other lymph nodes infected, and thank God, there wasn't.

Now regarding your question about Chemotheraphy and maybe Radiation Treatments.

Dr. Ko, my wife's Oncologist met with the UCSF Tumor Board to discuss all the options for Karen.  Surgery was not an option. Because one lymph node was infected they made the decision to go with oral chemotherphy (Xeloda) and radiation theraphy.  The radiation theraphy was 25 sessions of 3D/Conformal Radiation Treatments with a special 5 treatments of CyberKnife Radiation Treatments.  The IR department at UCSF inserted a gold seed into or next to the infected lymph node.  The reason for this procedure was so that the CyberKnife Radiation procedure had a target to go for.  This is a very sophisticated radiation treatment...I undersatnd the guidance system is very similar to the Cruz Missile Guidance System.

Bottom line...my wife is doing very well. She has a combo PET/CTscan every 90 days for 1 year and if all is good they will move this procedure out to every 6 months.  The PET scan is also a very sophisticated scan...Cancer can not hide from a PET scan.  It will see a mass less than 1cm.

So saying all this...I believe your mother-in-law has a very good chance to have a good quality of life in her future.

Hey Ken, your mother-in-law is very fortunate to have a son-in-law like you...I'm sure she know this already.

Take Care....wishing you and your entire famly all the best. If you wish additional information, just leave a message

Leonard