Topic: Hi y'all....from the South.

Yes, I am new to the site.  My mother  was newly diagnosed a week ago.  She is 79 but looks 70 and pretty healthy overall.  She is oriental.

It was an incidental finding as she had an elevated ALT which lead to a gall bladder U/S which they thought showed a kidney stone, and then performed a CAT scan and then ultimately CAT scan with contrast.  She had a referral to the Medical University of SC in Charleston.  That was when we heard it was "cc".  Her tumor (5 mm)  is at the portal vein so they did a MRI with contrast and we just heard that was fine and she, hopefully, is a surgical candidate.  I am assuming she it is just localized to the bile duct/liver so I guess that is Stage I? She will have an ERCP on Tuesday. I'm not quite sure why though? 

I am all she has and it DEFINITELY is hard.   I love her with all my heart.  Your site has helped give me encouragement.

Re: Hi y'all....from the South.

Dear Debbie, welcome to our elite family but sorry you had to join us. The ERCP is another test that can help diagnose what is going on with the CC. After that test the Doctors will probably tell you at what Stage she is at. Try to do some reading up on CC as knowledge is the best way to fight this. Attitude is so important so please try to be very strong, it is a long journey. And I promise once everything is put in to place and you have a game plan the fright turns to fight. Your Mother is very lucky to have such a caring and loving daughter. Please keep us posted 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.

3 (edited by PCL1029 Sun, 01 Jul 2012 08:08:45)

Re: Hi y'all....from the South.

Hi,
First of all, I am not a doctor, I'm just a patient like your mother. I am 63, but I have 2 resections in 2 years.
If your  mother is healthy and no other comorbidity, age is not an risk factor for surgery. But  I think you should get a 2nd opinion from radiation oncology to see whether IMRT or microwave ablation can be of value first. The reasoning is that if radiation intervention can be done, your mother can avoid surgery , and there will be less adverse reaction overall for your mother to endure.
The key word is location of the tumor in your mother'situation. The word you use is "AT" the portal vein. As compare to near or close by. Is this the exact word they use in the cat scan report? If not, then there can be more option in radiation treatment.
5 mm( 0.5cm) is small in size. A 2nd opinion from hepatologist like Mayo or John Hopkins may be a good start to see what should be done; some times "wait and see" in 3 month and re scan may not be a bad idea.
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: Hi y'all....from the South.

Hi Debbie,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I am glad that you've joined us here as you will get a ton of support and help from everyone. I came here after my dad was diagnosed and it was the best thing that i could have done. Everyone helped me loads and I know that the same will happen for you too.

I do hope that your mum is a candidate for surgery and I will keep my fingers crossed for this, and you should find out more news after they do the ERCP. Please keep us updated on how things go for your mum and also please know that we are all here for you and know what you are going through right now. 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.

5 (edited by marions Mon, 02 Jul 2012 21:51:03)

Re: Hi y'all....from the South.

Hi Debbie....ERCP aids in the diagnoses of conditions of the pancreas or bile ducts; it clarifies abnormal blood test results or, as it is in your Mom’s case images from the CT scan.  Most likely there will also be a brushing of the bile ducts. This is pretty much routine.  Good luck and
all my best wishes,
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: Hi y'all....from the South.

Mom had ERCP which was "great".  Went for surgery on Monday and they opened her up and closed her back.  It has spread to her lymph nodes.  This was NOT what we expected.  The surgeon mentioned "clinical trials".  He said she probably would not be here this time next year.  I read and read and read and I get myself so confused I can't think straight.  My heart aches for her.  Mom is sort of in denial which I think may be par for the course.  She thinks everything will be fine because she has no symptoms.  She says she does not want any chemo and does not want to travel for "clinical trials".  Will chemo help her at this point anyway?   I am so at a loss!!!  I am not ready to lose my mother.

Re: Hi y'all....from the South.

Hi,
If you mom choose "quality of life" at this point in time after the doctors assessments, it may not be  an unacceptable idea; just make sure your mom understand what  quality vs quantity means in making the decision.
I am not a doctor and I do not have all the info about your mom's prognosis by your doctors. But your mother's wish should be the final choice.
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: Hi y'all....from the South.

Debbie,

I am also struggling with the same dilemma. My mom (79, looks like 65) was diagnosed a couple of months ago.  It is inoperable due to vein and artery involvement.  I am wrestling with the idea of palliative care vs. treatment.  I watched my dad die of lung cancer and I swore I would never let my mom do  chemo.  The fact is, it is her choice.  I know she will suffer either way, but I do believe that hospice is wonderful and I also believe in quality vs quantity.  My mom wants to fight and is hopeful that the tumor will shrink so they can do surgery.  I cannot take this hope away. 

I think your mom needs to be counseled of all her options and in the end, it is her choice.  My mom is my best friend and the thought of losing her is devastating.  I feel your pain.

Best,
Lauren

Re: Hi y'all....from the South.

Hi Debbie,
   I'm so sorry that your Mom was unable to have the resection.  She may change her mind in the future regarding chemo.  It can actually improve a person's quality of life.  It sure helped my husband (for a few months anyway). Now he's going to try a new regimen to hopefully get it beaten back some so he can feel better again.  He is not a surgical candidate.  This disease makes him feel so lousy.  Anyway, we also live in Columbia.  He's getting treatment at SCOA (off Greystone Blvd.) and we've had nothing but excellent care there.  You might want to go check it out, it's a beautiful facility and the people there are wonderful.  Waiting is almost non-existent, they're so efficient.  Anyway, I wish you both the best and would love to meet you and your Mom if you are interested.
                                  Dianne

Re: Hi y'all....from the South.

Thank you all for responding.  Mom still does not fully understand what is going on.   It is sort of like she is going through denial (which I guess is par for the course.)  I feel like time is of the essence.  I finally have gotten her to agree to at least speak with an oncologist but she does not even want me to make the appointment until she is feeling better.  Thanks again smile

Re: Hi y'all....from the South.

Hi Debbie,

I am very sorry to hear about your mother. Please understand that I am only speaking from my own experience here, and don't want to give false hope, but I wonder about a second surgical opinion. Lymph node involvement does reduce the longer term "cure rate" of a resection, so some just won't do it. However, it does not make a resection technically impossible, so unless there were other reasons a resection is not possible -- like vein or artery involvement, etc. -- you might get a second opinion.

I had a similar experience. One medical center would not even consider surgery because I had multiple regional lymphatic tumors. A more aggressive surgeon at another medical center believed that surgery would still provide longer and better quality of life than other treatment options, and agreed to do the resection (and lymphadenectomy). Happily, he was able to provide us with a good outcome.

I do hope your mother finds new strength and determination. I know how hard it is. My best wishes to you both as you go through this confusing and complicated time.

Mark

Re: Hi y'all....from the South.

Mark, Congratulations to you, this is a wonderful post! I wish for you to keep up the good work and you are a true hero and survivor! There is always HOPE!

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: Hi y'all....from the South.

Well, it has been almost a year and mom is doing pretty good.  She has had chemo (po) and radiation (26 treatments).    Her tumor is stable and her CA 19-9 is only slightly elevated.  She still has no physical symptoms, thank God!  She is so lucky.  She thinks positive, stays active, eats healthy and has a lot of people praying for her.  God is good!

Re: Hi y'all....from the South.

So glad to hear this update on your mother!!  Sounds like she is a trooper and is enjoying life on it's terms.  Hope things stay stable for her for years to come.

Thank you for the update.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Hi y'all....from the South.

Hello, Debbie 1 and what a wonderful post this is as we love the word stable. Thank you so very much for the update and we hope Mom's progress continues! Please pop in now and then and let us know how the Southern Belle is doing!

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: Hi y'all....from the South.

Debbie...We love the kind of news you have brought to us in fact, we thrive on it.  I wish for continued success and for your Mom to enjoy life in spite of having dealt the Cholangiocarcinoma card.  May all good things continue.
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