Topic: My Mum

Hi all my name is Marc and I am from Australia

My mum has just been diagnosed with cholangiocarcinoma

Mum awoke one morning with jaundice so she went to the local GP where bloods were taken, and it was a one week wait to get an ultra sound done and get the blood results. From there, 2 days later, she was sent to a specialist.  He sent her for a CT scan and at the end of that week mum & dad went back to him and were told that she had a tumour. She was sent to a professor at the local hospital and he had seen her within a matter of days.
From there she was put into hospital and a stent (10/12/08) was put in place to get rid of the itch and jaundice and a biopsy was taken of the tumour, mum was sent home the next day. (11/12/2008) The Dr/ professor told her that it was a tumour and was not a good one. He ordered for her to have another CT scan on the Friday (12/12/2008) and we went back to the specialist on the Wednesday (17/12/2008),  were he said that the scan was not clear enough to see if the tumour was attached to the vein behind the bile duct. He was unable to tell if it was attached to the main vein leading to the liver and so he wouldn

Re: My Mum

Marc:  I did have a liver resection last year.  My tumor was 9 cm. and it did invade the Infererior Vena Cava.  I was a good health.  No jaundice though.  I have recovered from the surgery.  It was a hard road.  I was very tired.  It took a year to get back to work full time.  I'm glad I did have surgery.  You didn't say how old your Mum is.  I was 57 last year.  My vote is for surgery.  The liver regenerates.  I had about 3 inches of my vein removed and replaced with synthetic material.  I'm on an asperin per day to keep the blood flowing.  This website is full of great information.  You will be in my thoughts.  I'll check back later.  Gale

Re: My Mum

Marc, Welcome to the best little club in the world that no one wishes to join. It sounds like your mom's tumor is in her bile duct rather than the liver.  My husband, who is now 76, had a "Whipple" surgery 3 1/2 years ago as his was in his bile duct valve. You can pull up my past posts. It returned last April and he just finished Cyber Knife radiation but should be cancer free again next month. I don't wish to panic you but I believe your mom should be seen right away and to get another opinion. I would not wait over a month. I know there is somewhere in Australia she can go, I just cannot remember who wrote us from there. Perhaps if you use our search engine at the top of the page and type in Australia. I do know you will get some other good responses from our
Board. Good Luck and keep us posted.

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: My Mum

Marc-

Oh my gosh my heart goes out to you! This is such a blow. My grandmother was diagnosed in October. That shock is something that is so hard.

This is a GREAT place for support and help. Its the best I found.

My grandmother was jaundice and 83 years old. She was diabetic and had a heart stent put in a few months prior. Her health was already not the greatest. She opted for surgery ( I think it was a whipple but I'm not 100%) they took out her gallbladder, bile duct and part of her small intestine. The advantage of the surgery was not having to replace a stent every few weeks. While they were in there they were able to see the cancer had in fact spread. My grandmother opted for no further treatment. They didn't give us a "timeline" to speak of either. Everyone is soooo different.

It sounds like you have some good doctors. Second opinions are always suggested. My brother and sister in law live in Sydney but I don't know much about the health care system. Wish I could help more.

If you need anything let me know.

Love
T

Re: My Mum

Marc,

I too want to welcome you to our little world. As you have probably already figured out, this cancer does not play fair & affects everyone differently. What works for one may not work for another. Just know that here you will find a lot of good information, help & support. I will be thinking of you & hoping for the best for you & your family.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Mum

Dear Marc

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: My Mum

Firstly I would like to thank the members who replied to my post.

Gale918: my mother is 64yrs of age and the tumour is located on the Bile duct, encasing either the: Common Bile Duct, the portal vein or the hepatic vein or artery. I have written it this way as I am unsure exactly what it is attached to or effecting. If my mother chooses to have the operation, then there will be about one month

Re: My Mum

I found days when I was eager to search for information and then there was days I just took a break and had a "normal" day.  Don't let this research exhaust you.  Your Mum needs someone to cook her dinner, clean the bathroom or play a game of scrabble with her.  Chat later.

Re: My Mum

Marc,

I'm in N.Ireland but I lived for a few years in Oz (great times). When my mum was diagnosed a month ago I contacted a mate at the Mater hospital, Brisbane and got him to ask several senior oncologists there what first-line chemo they go with for CC. Answer came back 'Gemcitabine+Carboplatin and try to get on a clinical trial involving Tarceva'. So, if chemo is being considered they definately use these drugs there.

Also, I'd like to echo advice given to me on this board very recently: If surgery is being discussed, and if it doesn't interfere with her work-up, it's a good idea push for your mum to be started on something else in the meantime. My mum's due a chemo infusion on Chrismas Eve of all bloody days, but with this yuletide unpleasantness comes the anxiety-reducing fact that the disease is being hit (hopefully really damn hard).

Very best wishes to you, your mum, and your family,
Alex

10 (edited by ljg Fri, 26 Dec 2008 10:10:32)

Re: My Mum

Marc-

Hang in there with the roller coaster that is cholangiocarcinoma.  I have been there (we all have) and I am sorry that this disease is occuring in your family. 

Take good care of you first, and know that stinting the bile duct will provide some time.  It is a good first step to allow more "normal" function of the digestive system and liver, no matter where the tumor resides.  Your Mom will be weak and decisions may have to be made with her blessings, but more aggressively than the family may be comfortable with.  In our case, my Mom, a true fighter, did not have much strength at that time and she was in pain, the medications for which really did change her perception of the situation.  I am of similar age to you and we had to step-in in ways we were not quite ready for yet. 

My suggestion to anyone in this situation is to let the patient sort their issues AFTER some intervention that allows for that time (such as bile duct stinting), but do not be patient with this disease.  Get everyone, both in the family and on the medical team, to agree to work for your Mom quickly and assign a family medical advocate for the day/hours. 

When you are not solving the medical issues, enjoy each day as much as possible and live in the moments with her, Marc. 

Cancer or not, today is what we have, so find ways to stay present.  All my best, -ljg

Re: My Mum

Marc,
Welcome and I am sorry you had to find us. I understand how this can devastate and confuse a family. I had surgery and it was a hard road, but I would encourage anyone who has it as a possiblity to take it. The other thing I will strongly suggest is getting a professional therapist for your mother and family to talk too. I spoke to someone for about 4 months after I was first diagnosed and I really benefitted from it, as did my husband.

I am sending you big hugs.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My Mum

Hi how are things going
                     Janet from the south coast

Re: My Mum

Hi Marc,

Where are you located in Oz, we are in Kyneton (North of Melbourne).  My partner was diagnosed in August 08 and she is inoperable.  From the sound of your treatment approach by the Prof you may be having treatment at Peter Mac in Melbourne.

Hope everything is going OK.

Regards

Ralf

Re: My Mum

welcome marc
i would get a second opinion and not wait a month, you have to be aggressive and learn everything you can about this monster....surgery is the best option.....good luck and remember never give up and never ever take no for an answer.....ron