Topic: Sister newly diagnosed

Hi, I am Jeff from Memphis Tennessee.  My 46 y/o sister was first diagnosed with CC a little over 3 weeks ago.  She is currently hospitalized and just had biliary drains put in a couple of days ago.  I am not a clinician, but over the last 3 weeks I have absorbed every bit of information I can find related to this disease.  My search led me to this site which has been a great source of information.

Unfortunately, my sister has the deck stacked against her.  She had multiple heart attacks about 1.5 years ago while she was in the recovery room from a simple GI procedure related to chronic acid reflux.  As a result she now has mitral valve damage in her heart, along with 4 stented heart vessels.  Also, based on the information we have so far it appears her CC has presented at a very advanced stage.  Some additional diagnostic imaging is planned for later this week, but based on the first round the results are that she has a tumor larger than 8 cm at the point of bifurcation (Klatskin tumor) and it has numerous satelite outgrowths.  The doctors on her team told us this week that removal by surgery is not possible.  So now we are at a major decision point.  Based on her condition it is very doubtful that any transplant programs would include her in their protocols for liver transplant.

We very much believe in the power of prayer, so we are of course praying for healing.  But we are also praying for knowledge to make the right decisions and strength and grace to cope with what lies ahead.

thanks...
Jeff

Re: Sister newly diagnosed

Dear Jeff, welcome to our remarkable family but sorry you had to find us. I am so sorry about your Sister. Is she at a major Cancer Center and it can be very important to get a second opinion. Most Doctors understand that reasoning. What have they suggested for treatment? You may have to let the word surgery go for now but that doesn't mean other treatments won't help and bring that word back. We have seen it happen many times. Please keep us updated as we truly care.

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: Sister newly diagnosed

Dear Jeff,

I would like to welcome you to this site. So sorry you had to join. There are many treatment options out there. Chemo has helped my daughter feel so much better. She has just had a radioembolization treatment and is recovering from that, but it hasn't been that bad for her. She was inoperable when she started her treatments. The tumor board is split on their decision for surgery now, but after they see the results of this treatment, they may change their minds. They have many more options. What your sister chooses to do is up to her. I hope you are at a major Cancer Center. It is so important to have a group of doctors that are very knowledgeable about CC. I wish you and your sister all the best. Please ask a lot of questions. We are all here to help each other.

Love, -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: Sister newly diagnosed

Hi Jeff,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your sister. But I am glad that you have joined us all as you have come to the best place for support and help, and I know that you will get tons of both from everyone here.

Can you please give us some more info on your sisters CC and where was she diagnosed at and where is she being treated at? Also, have you looked at getting a second or third opinion for her? There are other treatments out there besides surgwery or a transplant. What have her current doctors talked about with regards to treatments?

We know that this is such a tough situation to be in and we so know what you are going through right now.Please know that we are here for you and will help as best we can. Please keep coming back and let us know how things go for yourt sister. We care.

Best wishes to you and your sister,

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.

5 (edited by PCL1029 Sat, 26 May 2012 19:37:53)

Re: Sister newly diagnosed

Hi,
Radiation and /or chemo therapy may be the standard treatment at this point.
But thru interventional radiologist using radioembolization for that 8cm tumor that may grow into the liver  and IMRT or SBRT for the bifurcation part of the tumor may NOT be  out of the question and if it can be done ,it may give your sister a few more good years.
The question here since I do not know the exact growth and extend of the Klastin tumor , the exact location ( ie: is it grew 100% out side the liver) ;please also consult a radiology oncologist for the combination use of radiation and/or chemo agents.
Even if your sister is young at 46. I think she may have already suffered enough.
So to consider " quality vs quantity of live" may not be an impossible idea.
Just a thought,send CT scan report to Dr.Keto or Dr. chapman to settle once and for all about the possibility of surgery is also a good way to let you know you had try your best for your sister with regard to top opinion on this field.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Sister newly diagnosed

I wanted to provide an update, especially since some have already taken the time to respond.  My sister was scheduled to have the drains removed and replaced by stents the past Wednesday.  Unfortunately she had a setback Tuesday night and that did not happen.  She had a couple of episodes with blood pressure, heart rate, fever and shallow breathing.  After the 2nd episode they ran some tests and confirmed she was in early stages of septic shock.  She is currently in ICU and has responded well to treatment so far. 

As of right now she is scheduled to have an endoscopic procedure next Tuesday to block nerves causing severe back pain (the back pain was actually the first symptom she had related to her CC).  Due to the sepsis the MDs think it will be a minimum of 2 weeks before drains can be removed and stents put in.

Honestly, we are just focused on the sepsis and pain management right now.  Thanks for the responses and I will try to provide future updates.

Re: Sister newly diagnosed

Jeff, I am so very sorry to hear of this set back but your are right, one thing at a time. This is the roller coaster ride related to CC and no wonder no one wants a ticket for this kind of ride! I am hoping the Sepsis clears up quickly and your Sister can get on with her stenting. Be strong, we are kind of used to these bumps in the road. The best news is that she is responding already to treatmet!

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: Sister newly diagnosed

Dear Jeff,
I am so sorry to hear your sister is now fighting sepsis. Please know you and your sister are in our thoughts and our prayers.
Hugs,
Roni

9 (edited by marions Thu, 31 May 2012 00:05:41)

Re: Sister newly diagnosed

Jeff....fingers are crossed for her to continue to improve  and that your sister can receive the so much needed nerve block.
A tidal wave of good wishes are heading your way. Thanks so much for keeping us informed.
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