Topic: Survival

Hello, my name is Sandie,  I am English but live in France.  Last November I experienced a dull pain in my right side.  The following day I visited by Doctor who organised a blood test for the next day.  My Gamma GT was extremely high and following an ultrasound I was admitted to hospital for further tests.  During a CT they found I had a large tumor on the right of my liver.  I saw a liver specialist and was told that unless the tumor was removed I would not live longer than 2 months.  I had a portal vein embolisation that cut the blood supply to the right side of my liver and forced the left side to  grow.  In January I had a resection and the tumor removed.  I was released from hospital after 10 days but 10 days later was readmitted as an emergency following chronic pain.  I had an emergency operation where 4 litres of bile were removed from my inside and my organs flushed clean.  Four days later I had a stent inserted and then started a course of radio and chemo therapy which I am still on.  The stent was removed and I will have an MRI in a few weeks.   This entire process has been complicated by the fact that my French is limited and the French have limited English.  However, I have been strong throughout and have had many laughs with the wonderful French staff at the various hospitals.  I really have one question - having got this far, what are the chances of the cancer recurring?

.... because I can ....

Re: Survival

Hello Sandie and welcome to our extraordinary family but sorry you had to join us. We never know survival rate which is why we don't listen to numbers. We have some Stage IV who have survived and we have some lower stages who have not. The general rule of thought is that surgery is the only way to stamp CC out. Attitude plays a great part in this and if you can laugh through all you have been through, you have a great attitude. Wishing you the very best and please keep us posted on your progress.

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: Survival

Hi Sandie,

Welcome to the site. I am sorry that you had to find us all but I'm glad that you've joined us all here as you will get tons of support and help from everyone here. You sure have been through so much in the last 6 months and thanks so much for sharing your story with us all. I can imagine that it must have been made so much harder for you with your French being limited, but from what you have said, it sounds like your sense of humour is good and you do indeed sound very strong still. Your strength and a positive attitude will do you much good throughout.

As Lainy syas, we can't know an individuals chance of recurrance. Please continue to stay strong and be positive and know that we are all here for you. I'm sure that you will have other questions over time and feel free to ask them here and we will do what we can to help in answering them. And I hope that you will keep coming back here and please let us know how everything goes for you. We know what you are going through right now and we care.

My best wishes to you,

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.

Re: Survival

Hi,
To answer your one question;
The answer is :The chance of recurrence is high even after resection(>65%).
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: Survival

During my husband Tom's journey, the stats go something like this.

1 in 200,00 present with Cholangiocarcinoma
of those 5% are elibible for resection
of those 1% will experience a re-occurance

It is a rare cancer.  My Tom was a rare kind of guy and he hit all of those stats. Per the research that I did, a liver transplant for CC patients is very rare because this cancer can, will and does re-occur, even with a transplant.

Liver's are 'hard to come by' so they do not like to do transplants with a CC patient because studies have shown that even with a transplant the CC can re-occur.  And, even with a transplant, studies have shown that the life expectancy does not change with a transplant.  The studies that I read stated that transplanting a liver into a CC patient does not change the 5 year survival rate.

Sad, but oh so true.  My Tom fought the battle of his life and his battle ended after 3 years and 8 months.  My only hope is that the doctors and oncologists are learning more about this cancer and how to fight it and to increase the odds!

I think that one should not focus on the stats, just keep the faith.  Tom never gave up but eventually his body just started shutting down, he fought till the very end.  And the doctors can be wrong!  They gave him less than 6 months and he lived almost 2 more years to the day.  I was grateful for every day that we had for those 2 years.

Go with God and KEEP KICKIN' THAT cancer!

Love and Hugs,
Margaret

Re: Survival

Hi Sandie,
I had liver resection Jan. 2009 and am still cancer-free.   While recurrence statistics are discouraging, not all CC  patients have a recurrence...someone has to make up the small percentage number who do survive....may as well be us.



betsy

Re: Survival

Hi Betsy, AMEN to your post! You are a beautiful Miracle!

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: Survival

Dearest friends, thank you for your responses, all of which give me great hope for a long future.  I am with Betsy, we re going to make up that small percentage.  I believe my tough attitude and sense of fun has held me in good stead and will do in the future.  I persuaded the radiographers to put up a picture of Brad Pitt next to Shrek on the ceiling of the radiography room and I know this small thing has put a smile on the face of many adults having radiotherapy.   But I also know from my experiences that you cannot be tough all the time and it is during those times that I have strength in reading the amazing stories on the site.  God bless you all and thank you. Xx

.... because I can ....

Re: Survival

Bonjour Sandie!

Diagnosed with CC 11/2009, Whipple 12/2009, Chemo 2/2010 - 7/2010
Still kicking 4/2012

There is hope and no one should give that up.  Hang in there!

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: Survival

I believe that it has always been the motto of this board that someone has to be in the upper portion of the equation. There are many things we don't know, but we know for sure that not everyone will have a recurrence.
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: Survival

7.5 months post resection, just had a clean scan last Friday. Yeah, what Betsy said! I'm with her too!!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Survival

A big fat YYYYYYYYYYYaaaaaaaaaaaaaayyyyyyyyyyyyyyyyyyyy to all of you that are beating the odds. You are what give us hope!!!!!! Love to all of you.

-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: Survival

Congratulations, Derin.  This is a wonderful thread.
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: Survival

Hello Sandie,

My wife Dawn was diagnosed in November of 2005, resection done in January of 2006 and is cancer free. There is hope!

God Bless,
Richard

Re: Survival

Dearest friends, you are all so amazing and I have so much more hope now thanks to you all.  Due for a scan on May 11th following completion of radio and chemo, post scan I WILL be celebrating my future.  Love and thanks to yo all xx

.... because I can ....

Re: Survival

Sandie...we are celebrating right along with you.  Please keep us posted.
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: Survival

Sandie,

I hit my 5 year cancer free anniversary on January 29 of 2012 and I am still going strong!!!  Don't let those statistics get you down. There are survivors!!!!

hugs,
Sue

Today is a new day. Congratulations, you are already a survivor!

Re: Survival

My husband had small tumor in distal eng of gall duct.had whipple in sept. 2010 margins were clear, did radiation and xeloda . now has 2 to ours in liver. He did chemo here in grandrapids mii. And tumor still grew Went to mayo and they say he cannot have surg. Or ablation because he has severe fatty liver. We were not ever told that before. So tomorrow he will try new chemo. We are told even if tumors shrink they won't try anything else here or at mayo. Mayo said there's no point in try ing surg. Because this cancer WILL come somewhere else. We are praying for a miracle!

Re: Survival

Hi,
Mayo told me  that my cancer,which completely resected the second time,will most likely to come back after adjuvant  chemotherapy when I made that consultation to learn more about my cancer. I am still on the adjuvant chemotherapy . As you may know,the recurrence rate of this cancer is very high(50-75%) ,but it does not mean that we should not keep on trying our best to fight against this cancer; buying time as long as we can  by using current available medical treatment methods-- chemotherapy agent,targeted agents and radiation treatments ; and hoping the new drugs can be here in time for us.

In my opinion, Mayo Clinic is very conservative but truthful in their assessment .

So, as they said, try the chemotherapy tomorrow,take it one day at a time .
Try to get an opinion on radioembolization for your husband to see whether he qualify or not if there are no mets to other parts of the body except the liver.

Be strong and knowledgable in fighting against this cancer; be hopeful and practical in dealing with this disease knowing that you have try your best for your husband and there will be no regret when the time has come.
This is my way of looking at this disease and only God's grace will say otherwise.
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.

20 (edited by marions Tue, 08 May 2012 03:21:48)

Re: Survival

destraub... hello and welcome to our site.  You might take some comfort in knowing that on this site only recall a handful of people, who upon recurrence present with particular, favorable, circumstances to allow for a repeat surgery of this cancer.  Similar to your husband the majority of people move on to another chemotherapy regimen.  We have seen some excellent responses to the available treatment and there is no reason to believe that your husband won’t be equally as fortunate. 
In my family we used this analogy:  We compared this cancer to a fire – it was extinguished and we then treated the flair-ups via any means available to us.   So, stay hopeful, destraub.  This board is known to stay positive and supportive something you will experienc real soon, as others will chime in and share their thoughts with you also.
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: Survival

Finished radio and chemo and yesterday's MRI scan clear.  Doctors happy with blood tests.  Thank you to everyone for just being there.  xxx

.... because I can ....

Re: Survival

Great news Sandie!  Congrats!
Hugs
-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: Survival

Sandi....the doctors are happy, you are happy and so are we.  Congratulations. Enjoy.
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: Survival

Yea, Sandie! I love waking up to news like this. You go girl! Keep the good news coming.

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: Survival

Hi Sandie,

This is great news!! Thanks for letting us know and looking forward to hearing more good news from you.

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.