Topic: Hello everyone I am Pat a very blessed cc survivor

I am new to this site and I have just recently found this site.In september of 05' my doctor discovered a tumor in my left hepatic duct with a ultrasound of my gallbladder and it was the first time I heard the name cholangiocarcinoma, he said "there is a chance, a very small chance, a fraction of one percent, but we must make sure this is not something very bad....Cholangiocarcinoma. Well as fate would have it this was, after five months of waiting for tests and appointments with multiple specialists I was operated on at the cleveland clinic. My liver was resected, my gallbladder was removed and a portion of the bile duct was removed.Sixty percent of my liver was removed and biopsy tests showed this to be cholangiocarcinoma in my liver and the tumor in the bile duct. I had no chemo as my oncologist said at that time there was no effective chemo for the genetic profile of my cancer.I went home on day five after surgery and was back to work in 10 weeks. I was 49 at that time and fortunately I had no complications or infection and I finished my career and retired in 2010 and I am grateful for every day. I have volunteered for numerous cancer support groups and have mentored a few people, sadly all who have done poorly against this awful demon of a disease making me more aware of how very blessed I am ...I lost eighty pounds during my battle and fortunately I was able to keep my weight on with cannibis and a new diet. lack of appetite was my only side effect from the surgery besides not being able to lift heavy objects. I just celebrated my seventh anniversary of my surgery in january and I will be glad to share the details of my success with this awful cancer. I was lucky to have a tumor that caused a pain when I ate greasy food and drank a beer. My doctor said textbook gallbladder problem and ordered a ultrasound of my GB. I am pretty much able to do anything I could before and that is my story I hope I can help someone with my success...Pat

Re: Hello everyone I am Pat a very blessed cc survivor

Dear Pat, welcome to our family and you have already helped by posting the story of your journey. You have given others hope by celebrating your 7th Anniversary. When you were diagnosed is exactly when my husband, Teddy was DX and he had a Whipple. 5 Docs said no to chemo/radiation as they said it would not help. Even though he had clean margins. We have already come a long way in these 7 years. I wish for you continued success and please keep us updated. May I ask how often you see the ONC and are you still having scans? You are a new SUper Hero and we are glad you found us!

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: Hello everyone I am Pat a very blessed cc survivor

Congratulations. Your story gives us all hope.
Would you be so kind as to mention the size of the tumor and the grade of differentiation when it was discovered?
Thank you and enjoy your new life.

Re: Hello everyone I am Pat a very blessed cc survivor

Pat....Congratulations on being a long term survivor of this disease.  We know that many others are out there showing long term positive results with this cancer; but too cancer survivors join our site therefore, huge thanks to you.
Our Bruce (2000miler) has been collecting data from our site and has provided us with some internal statistics hence, your posting will allow for an upward curve in the long term survival rate. 
Pat, please know that the Cholangiocarcinoma Foundation provides an array of opportunities in various areas of advocacy.  If you are up to it and would like to become part of our community please, contact me at marion.schwartz@cholangiocarcinoma.org.
More than anything though, I am thrilled to know that you are doing well and that life is good for you.
Again, thanks for joining this fantastic group of members; you are a welcome addition.
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: Hello everyone I am Pat a very blessed cc survivor

Hi Pat,

Your story is just lovely to read - thank you for sharing it.

Clare

Clare

In the stars now . . . .

Re: Hello everyone I am Pat a very blessed cc survivor

Thanks you so mush for sharing your story!  We don't hear from many long term survivors. 

Take care!

Susie

7 (edited by PCL1029 Sun, 31 Mar 2013 20:53:48)

Re: Hello everyone I am Pat a very blessed cc survivor

Hi,
It is only by the Grace of God that I am still alive today. Most of the people on this board have known me for a while already, but for those who newly joined us, I am a patient for 46 months and still on chemotherapy; and with relative good health and energy that can let me choose as an advocate for this disease on this forum as well as other organizations like the FDA.
The point I want to make is that, each additional day that we can have beyond the burden of this horrible disease,we should not forget thousands of the others who are  having this disease and  still waiting for their term to be set free from this disease, or at lease to have same the opportunity like us who are relatively well and  in remission.
I think this is the strongest motivation for all of us , who are able to contribute to this cause, to be an advocate for this disease by joining or seeking  the  various  areas of advocacy like Marion suggested to help ourself to learn more about this disease(as the recurrence rate is awfully high) and at the same time helping others who are in need  and  less fortunate than us. I sincerely believe that if more of us taking on as advocacy voices in our communities, the more people will aware of this disease and more research will be done on this disease and the sooner we(including me and those who are in remission) all will be free at last of this disease .
I always wander if #34 of the Chicago Bear spoke out as an advocate of his disease at the time of his diagnosis , what will be the  benefits that he can give to all of us by now because of  his fame and love by all of the sport fans at that time? But  instead, he kept it quietly till the end of his life..
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: Hello everyone I am Pat a very blessed cc survivor

It has been a few years (at least six) since I saw my surgical report and biopsy..the intrahepatic tumor was contained inside the bile duct obstructing flow of bile in my left hepatic duct...1.5cm if I remember correctly no involvement with nearby lymph nodes the left lobe of my liver was sickened by the backup of bile according to the surgeon..however on the suggestion of my doctor who initially ordered the ultrasound, I avoided greasy food and alchohol from then on...I never had another symptom or pain until my surgery...without a little greasy food (deep fried chicken wings) and draft beer I might not have known about the chaos going on in my belly until it was further along...going by your websites system of staging I would be stage one...as I said I am blessed or plain lucky over and over...so I try to do something for someone else every day.That is how I am attempting to give back to whatever angels have done their work for me and it seems this site is a great place for me to be for now.Thank you all..Pat

Re: Hello everyone I am Pat a very blessed cc survivor

forgot to mention...I now see my oncologist once a year...my last scan was two years ago and upon discussing it with my oncologist I decided to forgo further scans as each is quite a dose of radiation..livers dont like radiation according to my doctor so we just do blood scans...even if this does return I am not sure of what options there are after you've been resected and your liver is regenerated  I do have primary sclerosing cholangitis so a return is possible but not so likely after 7 years. I have studied much about diet and exersize and I am my own advocate...if something doesnt sound right question it..doctors like to see you are very concerned about every detail...I must be doing something right to have  come this far,avoid stress, eat healthy, (bananas are the perfect food) learn to sleep correctly, get a dog to keep yourself moving and to make you laugh...and oh yes laughter is the best medicine you can prescribe yourself to forget your problems so seek it often...bless you all who read this and I hope something here helps you, Pat

Re: Hello everyone I am Pat a very blessed cc survivor

Hi Pat
Welcome and thank you for sharing hope. I am also a Cleveland Clinic patient, who was your surgeon ? Dr. John Fung is mine and I love him...he is a wonderful man and brilliant surgeon
Lisa

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: Hello everyone I am Pat a very blessed cc survivor

Thank you, Pat!!! Great story and advice!!
Willow

Willow

12 (edited by PCL1029 Mon, 01 Apr 2013 21:16:14)

Re: Hello everyone I am Pat a very blessed cc survivor

Hi,
I tend to be different with regard to recurrence. I believe that once you have CCA, even after you resected ,the chance to recur again is between 50-75%, depending on what type of CCA you had , with the best survival rate for distal CCA. I would not comment on your case,but please keep on searching and reading the messages on this board until you will find the most appropriate answer to you that is  related to your case the most. Seven years out of the wood is a major victory over this disease, but I will not let my guard down for one bit.

Re- resection, Adjuvant chemotherapy and targeted therapy,long term maintenance chemotherapy, RFA, microwave ablation,chemoembo , radioembo, IBRT,SBRT,( cyber knife ,nano knife), PDT ,proton therapy, immunotherapy such as adoptive cell therapy(TIL treatment). All of these are potential treatment for recurrence . As you know ,the liver can regenerate itself, that means, even if there is only one cancer cell left in the liver or the bile duct area after surgery, that onecancer  cell can also regenerate with the heathy cells and multiply into  millions over time and become cancer again.Therefore I don't think in the same way that you think about this cancer.But I am not a doctor, so I can be wrong and you can be right.
One more thing, to monitor cancer thru only blood work every year may not be enough,CT scan once a year after survival for five years may be the best way to monitor the recurrence. Your oncologist should give you clear instruction on that.I personally will not be bothered by the radiation from the CT scan since I do believe " the benefit outweighs the risk).
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: Hello everyone I am Pat a very blessed cc survivor

Great story Pat. Some sound words of advice as well. Thanks for sharing.

bob

Re: Hello everyone I am Pat a very blessed cc survivor

please dont think I have I stopped watching...you are correct about not letting my guard down and I am considering taking a look...news stories can be decieving as I have read about older models of ct machines that put out 20 times the radiation as newer ones I  looked at the machines  I was being imaged on and there is quite a variety of manufacturers and models.I ended up going where the newest looking machine was...this was just another thing and I have seen how this disease doesnt stop with mos t and I dont feel my situation is all sunshine and lollypops by any means news stories can mess you up as much as they can educate you.

15 (edited by PCL1029 Mon, 01 Apr 2013 11:55:25)

Re: Hello everyone I am Pat a very blessed cc survivor

Hi,
You are correct, and so does the messages on this forum; no one should trust the internet information completely; You have to educate yourself to make the correct judgement and decision for helping your self.The same can be apply to reading and researching medical article on the web. Not all of them about our disease are of useful info for us. but it is also important for us,at least me in this situation as a moderator to provide as many and as fast as I can read the original articles that provide insight and proposals and choose the one that  that can help our goal of finding cure no matter whether it is oncology,radiology,surgery,CAM and immunology related and if we can, we also  try to provide the best suggestion to all of the patients who ask for specific questions.,Our Gavin,Eli and some other members are doing the same ,providing their own details to try to help other patients who may be having the same situations.And our Senior Moderators like Lainy and  Marion too. But no matter how much time we can spend on  questions and  patients as well, the ultimate decision is onyou  and only you and your family to decide alone whether the information your receive from this forum is just news or of benefit to those who seek and learn about this disease.
The above statement is apply to all of the members as well."Buyer be aware"
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: Hello everyone I am Pat a very blessed cc survivor

I was unawaare a re-resection is even possible,with intrahepatic tumors as mine,  half the bilary tree is now missing and all bile flows through the right hepatic duct which is attached directly to the bile duct below the gall bladder. The amazing thing is the liver regrowing like a lizards tail, but a so much more complex vascular organ with bile ducts and blood vessels throughout , unless a tumor would be in the regenerated portion of the liver, this is why I have not watched vigilantly as I believed my options are much reduced, and to be honest I hate ct scans, the harpoon like iv for the automatiically dispensed strange blue fluid and the delicious milkshakes beforehand, gosh I have missed them. We do whatever it takes but sometimes you begin to feel like a professional patient after a while.

Re: Hello everyone I am Pat a very blessed cc survivor

Oh, Pat love your new title, "Professional Patient". If you don't mind I am going to steal that one for my friends and family.

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: Hello everyone I am Pat a very blessed cc survivor

Hi,
I think you understand the situation you are in . So gook luck and  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.

19 (edited by hercules Wed, 03 Apr 2013 17:17:36)

Re: Hello everyone I am Pat a very blessed cc survivor

You may take and use anything I post here.If it brings a smile or a laugh to any individual or group I have succeeded.I hope to make you smile again...I would like to add that one key thing to long term survival is to teach yourself to not worry about things you cannot control,I remember shortly before my surgery I was putting away christmas decorations and thinking to myself "will I ever even need these again? " I had a flood of emotions and I could feel the energy being sucked out of me and I thought no! No darn way will I self destruct like that and I decided what happens is going to happen, be positive and live each day with renewed thanks and energy, do not beat yourself up about what might happen.One of the doctors in my journey said' Hope for the best, plan for the worst'...meaning to get your affairs in order.Well I believe "hope for the best, strive for the best" and think positive all the way, live one day at a time and make a list of things you want to do in your life story and focus and live all you can.Somehow it worked for me, be kind to all that have helped you,and your mind will be too busy to think self destructively, this has worked for me,thanks Pat