Topic: Savannah - Newly Diagnosed

Hello , My name is Susan and my Mom was diagnosed last Friday July27th. She went in for Gall Bladder surgery  on Saturday July 21st, and they noticed her liver enzymes were elevated and she had a narrowing of the bile duct. The surgeon told us of this narrowing and said that it can sometimes be caused by cancer but he also told us he saw no signs of cancer. Needless to say we were shocked by the pathology reports from her gall bladder. We were told that she has stage 2 but I don't know much more, they are scheduling a ERCP and PET scan once she heals from the gall bladder surgery, our first appt is on August the 13th. Her liver enzymes have gone back to normal and we were told her liver is fine.  I am not sure what questions I should be asking and if Memorial Hospital is the place for her to seek treatment. I live in Atlanta and we have Emory here, I really wish that she would come up here but she likes her doctors there. I just want what is best for her, she is 74 and other than high blood pressure pretty healthy. Our family is devastated, I want to make sure she gets the best care possible.

2 (edited by PCL1029 Fri, 03 Aug 2012 18:42:51)

Re: Savannah - Newly Diagnosed

Hi,
First and foremost,I am just a patient of this cancer for 38 months now; By God's grace, like your mother ,I discovered my cancer accidentally earlier enough to be still alive today through the good hands of my liver surgeon.
The point  I want to make here is that you have to seek the best liver specialist,liver surgeon and other medical professionals to handle this relatively rare cancer if your mom's cancer is only at the earlier stages of stage II.

Without skillful physicians who specialized in this cancer, prognosis is usually poor and time wasting with regret.

If you cannot go to Mayo Clinics  in Minnesota for 2nd opinions by a liver specialist (Dr. Gores-liver transplant specialist at Mayo) or at John Hopkins in the  East;along with medical oncology consult there, I think seeking  medical care provided by local hospitals(such as ERCP) may not be the best choices for this disease and may be time wasting and delay the earlier chances of appropriate treatments for your mom. If I were you, Call Mayo Clincis  or John Hopkins to schedule appointments(appointments usually required  MRI or Ct scan,ERCP,Lab tests etc.) as above should provide your mom the special care she will need especially if What you said  her cancer is only stage II.
Surgery provided the only possible cure for this cancer, and early accurate diagnosis provides  the best chance to take advantage of such possibility of being cure.
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: Savannah - Newly Diagnosed

Thank you, that is what they have told us is stage 2, may I ask how old you were at diagnoses? Will her age play any part of her not getting the liver surgery? She is 74 and will be 75 in November.

Re: Savannah - Newly Diagnosed

I have one more question, how can it be that her liver is fine and liver enzymes are normal if this cancer effects the liver? I'm sorry I'm just having a hard time understanding.

5 (edited by PCL1029 Fri, 03 Aug 2012 20:26:03)

Re: Savannah - Newly Diagnosed

Hi,
Base on your message,I assumes your mom have bile duct cancer in the common bile duct?( you indicated the narrowing of the bile duct)
If the cancer spreads upward along with the bile duct, it will affect the liver to become cancerous , if it spreads( metastasized ) down ward along the common bile duct, it may spreads to the abdomin and may cause to have cancer like peritoneal carcinomatosis or affects other organs.
For practical purposes, you should decide where to have the second opinion before August 13 . The learning curve for you now may seem to be very steep,but as the times goes by, you will do fine.
In theory, if your mom is relatively healthy,and does not have other health issues, age will not be a risk factor ,that is why you need a center which is familiar with this cancer to treat your mom.
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: Savannah - Newly Diagnosed

Dear speppers12, I wish to welcome you to our remarkable family but sorry you had to join us. Ditto to everything Percy said. We are strong believers in 2nd and 3rd opinions. Also like Percy said, you need to be at a hospital known and experienced for treating CC. Read up on CC as much as you can as knowledge is powerful in fighting this Cancer and be very strong. Please keep us updated as we all 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: Savannah - Newly Diagnosed

speppers.....I also would like to welcome you to our site and share with you that Winship Cancer Institute (Emory Hospital) has treated numerous Cholangiocarcinoma patients.  Although, your Mom likes her current physician, she might consider obtaining a second opinion in your area.
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: Savannah - Newly Diagnosed

Hi speppers12,

You are experiencing what we did 8 months ago.  There is a lot to learn in what seems like a very little amount of time.  Like the others, I'm sorry you have had to find our group, but I am glad you did.  These boards are a wonderful resource, and I'm still learning as we move into our second round with CC.

Misty

Re: Savannah - Newly Diagnosed

I'm going to do my best to talk her into coming back to  Atlanta with me this weekend. She's telling me she doesn't feel up to the ride and I understand, she just had major abdominal surgery and a 10 day hospital stay. But I don't want to waste time.  I would feel much better if she were up here with us.

Re: Savannah - Newly Diagnosed

Goodness, I just looked at the drive from Savannah to Atlanta.  4 hours probably does seem daunting.  Make lots of stops so she can stretch her legs.  Maybe keep a pillow handy, she might feel more secure having one to hold across her tummy.

I hope she'll agree, for your peace of mind.  My father-in-law just lives 1/2 hour from us.. in the same metroplex area, but that's plenty far when a late night call comes and he needs our help.

11 (edited by marions Sat, 08 Sep 2012 16:54:21)

Re: Savannah - Newly Diagnosed

Misty...this trip may be a big daunting for her so soon after surgery.  You might want to discuss it with the physician first.
This is not to say though that other things could not be handled in the mean time. (Request of her medical records including, surgery report, scan, etc.) Once received you can take the next step of contacting the physician in the Atlanta area.  Just a thought.  You are a wonderful daughter to your Mom.
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: Savannah - Newly Diagnosed

I think I will call her regular MD tomorrow to see if she could be cleared for the trip. My brother has a minivan she could lay back in. I just fear they are not moving fast enough. She still hasn't even had the PET scan yet.