Topic: Seeking info about Prognosis

G'day, I'm a 73 bloke from Australia diagnosed just 4 weeks ago.
I presented with dark urine being the only symptom.
I was hospitalised for 3 weeks and underwent LFT bloods, Cat scan, Ultrasound and an MRI after which a stent was implanted. The time for resection surgery has passed.
My urine is, in general, a lighter colour and at times almost completely normal.
Has anybody been through, or had experience the same introduction to CC and if so, can you give me a 'ball-park' number for the period of time between this stage and death?
I'm in reasonable condition for my age and have felt no pain or discomfort in any way.
Thanks.

Re: Seeking info about Prognosis

hi,
please tell me  is the tumor in the liver or the bile duct? any CT or MRI  conclusion or impression statements you can copy and paste on this message board or you can send me a email if privacy is your concern.
I will try my best to give you a honest opinion or an opinion in general without upsetting statement.
At this point ,I think you should not concentrate your energy on the word" death".
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: Seeking info about Prognosis

Dear Currakid, welcome to our remarkable family but sorry you had to join us. My husband was 73 when he was diagnosed. He also started with the dark urine but he did Jaundice and had major itching. He was stented which relieved all of that and then had a successful Whipple surgery. Attitude does mean a lot here and we try to remain optimistically realistic because we have no way of knowing date frames. We have members who were told months and they proved that wrong and we even have one who is in his 15th year. Have your Doctors given you a treatment plan? Where is your CC located and have they given you a Stage of the CC? Looking forward to hearing more.

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: Seeking info about Prognosis

Thank you both for your welcome and wise words.

I have a consult with the Specialist booked for July 12 and will get some answers to the questions you raised.

Thank you for this site ~ I'm glad I found it.

Re: Seeking info about Prognosis

Hi,
Three pronged approach is the best way to handle this cancer,so besides the medical oncology consult, you should also ask them to refer you to a radiation oncologist for consult whether other treatment plans are available, the surgical consult form a liver specialist is the other arm of the treatment, but I guessed you had already done so.
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: Seeking info about Prognosis

Last week I had a consult with the Specialist (who has been doing some homework on my behalf too) and his findings were:

Surgery is definitely not an option since the cc is located in a position that simply prohibits resection and leaving a margin (it is around the biliary duct and has compressed it.)

Radio and Chemo therapy are not options ~ again the location, which he described as 'tiger country' ~ the cc is crowded in by assorted ducts, blood vessels and etc.

The stent is doing its job well and there has been no recurrence of jaundice or deeply coloured urine.

My almost total lack of appetite is 'par for the course' and I'm to continue on a food supplement, Ensure, and sort of force feed myself as best I can.

The current 3mm diameter plastic stent will be replaced by a more permanent 10mm metal job on 2 August so another MRI after that date will reveal more data.

On the plus side, I have had no pain or discomfort apart from the odd bout of mild nausea.

We discussed Photodynamic Therapy and he volunteered to find out whether it is available in Australia yet, and if so, whether I'm a likely candidate, and who does the procedure and where and when.

Thanks for your site, and those who care.

Re: Seeking info about Prognosis

Hi Currakid, not the news we wanted but the fact you have no pain is good. You might want to ask your ONC for something for Nausea if you have not. My husband's CC was contained in the bile duct valve at the head of the Pancreas and I am wondering if that is the same area. Teddy preferred Carnation Instant Breakfast if you need some change up it has all the nutrients that can take the place of a full meal. He liked the vanilla and I would blend in a banana. Another suggestion is not to eat full meals but to graze during the day on bits of things you like and oh yes, comfort foods like soups, pasta etc. Sending a ton of best wishes for August 2nd and 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.

8 (edited by PCL1029 Fri, 20 Jul 2012 18:05:05)

Re: Seeking info about Prognosis

Hi,
I have never heard that   "systemic chemotherapy"  is not an option  right at the open dialogue of treatment for bile duct cancer especially you indicated you may have the option for PDT. And your description about the Specialist raise the question whether he/or she is a doctor who specialized in the GI oncology field.
I may be dump,but base on your message, I cannot really know where your tumor exactly located;(my guest is the upper third of the common bile duct)  therefore I will restrain my comment until your next MRI scan and I would like ,if you can, copy the EXACT wording of the MRI report's findings and post on the board, or email to me thru this board;that way I can have a much clear picture of  your situation to make some  suggestion . Again I am only a patient travel the same road as you are now;it is a long and winding road for sure.
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: Seeking info about Prognosis

curakid....Our Janet is in Australia and I am hoping that she will chime in also.
Cholangiocarinoma is a rare cancer; I wonder how many cases your present physician has treated? 
Is your nausea constant?  Please continue to share with us; we care.

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: Seeking info about Prognosis

Hello currakid,

I'm new too and am also in Australia. Very nervous about posting. My husband is in hospital at present, having had his second resection for intrahepatic cholangiocarcinoma a few days ago. We've come to Sydney for this operation because his first surgeon is away at present.

I have no medical knowledge and you may be happy with your specialist, but just wanted to say that perhaps you might look for a specialist who is involved with one of the big liver units here as they would be presumably be most likely to have experience with recommendations for therapy. There are liver units at RPA in Sydney and Princess Alexandra in Brisbane; I would think there are others as well but haven't looked into it. I've seen research publications on CC by people from a number of other Australian hospitals though, for example the Austin in Melbourne has a clinical trial going; people from St George in Sydney published on surgical outcomes a couple of years ago; Sir Charles Gairdner in Perth recently published on chemoradiotherapy outcomes. 

Best wishes,

Genevieve

Re: Seeking info about Prognosis

Dear Genevieve, welcome to our remarkable family and don't be nervous, this is a site full of loving and caring people. I am sorry you had to find us and it sounds like you are doing all the right things and of course one of our favorite words is surgery around here. I hope your husband is doing well and p-lease don't be a stranger now, 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: Seeking info about Prognosis

Thanks for your kind words, Lainy. I'm going to post an introduction now.

Genevieve

Re: Seeking info about Prognosis

It's been a busy few months ~ and a special G'day Genevive and thanks for your information.
Following my diagnosis I was stented at Tamworth hospital where as fortune has it, there is a GI Specialist.
I had a follow-up consult with the GI Specialist at John Hunter (in Newcastle) who stated that neither chemo nor radio therapy was an option and early August I had a permanent metal stent replace the plastic. Since Photodynamic therapy is not available in Australia I would now be referred to Oncology and Palliative care.
It's now four months since the original stenting and I've got to admit that I feel remarkably well ~ no pain, no discomfort and no restrictions in mobility. My BP is stable and well within the 'good' area and my weight has stabilised at 80Kg (+/- 2Kg)....I feel a little more tired than usual and get knocked up a bit earlier ~ but whether that's down to the cc or being 73 I don't know.
Now that the merry-go-round has slowed, I'll look in more frequently and hopefully may even be able to bring a bit of cheer to my fellow travellers.
Thanks for being here.

Re: Seeking info about Prognosis

HELLO OVER THERE TO YOU, Currakid! Trust me some of the tiredness is age, I know I am 72! Glad you are feeling so good as that in itself is a blessing and helps to conserve your energy. My husband was on Vitamin B12 shots once a month and that helped his energy level. I love your attitude and your courage and of course we would love to hzve you on Board more often to cheer your fellow partners along this journey. Good to hear from you!

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: Seeking info about Prognosis

cureakid...(love your signature).  Sure is nice to know that some normality has returned to your life; that you are feeling well; your weight has stabilized and that minus some excess tiredness you are able to go about your way.  Great news!  You might also want to keep track of your temperature and report any fluctuation (should it occur) to the physician. 

Good luck and 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: Seeking info about Prognosis

Hi, my Dad was diagnosed with this cancer on Tuesday. He was to have a whipple but when the surgeon went in he found nodules and tumours in the small intestine too so the whipple was abandoned and the tumour blocking the bile duct was bypassed instead. Chemo has been suggested but I am reading that it doesn't work on this cancer. He too presented with jaundice and dark urine, pale stools. He has no pain other than surgery. It took nearly 3 months to get this diagnosis. Can anyone tell me more? Oh, and the surgeon said he can't be 100% sure but he thinks the liver is uninvolved at this time. The tumour in the small intestine is 1 cm and is advanced

Re: Seeking info about Prognosis

Hi,Sheedy76,
I believe that your Dad had extra hepatic bile duct cancer( ECCA) if the surgeon believed the liver is not involved this time.
The ECCA had metastasized to the intestine ,therefore systemic chemotherapy like FOLFOX 6 or FOLFOX7 ,GEMOX, GEM/CIS OR FOLFIRINOX  or GEM/5FU  regimens of chemotherapy are the choice of treatment as well as clinical trials if offer.
Chemotherapy result is different from patient to patient, in general , it works up to the point when drug resistance occur or the side effects are intolerable . Then they switch to other regimen and continue the fight. Chemotherapy works  but it is a long and winding road ahead for sure with no guarantee .
I am a patient like your father who have this disease for the past 39 months.
I hope the Grace of our Lord ,Jesus Christ, will extend His hand ,like He does to me, for your father.
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.