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Yesterday was the seventeen year anniversary of the ultrasound that found my tumor, still doing well, and I am blessed with another year of life. Haven’t checked in for a while, spend most my time on FB need to spend more time here, just checking in. Pat
Fifteen years ago this morning I was prepping for the resection surgery that saved my life . I have had no further treatment and no recurrence. I am grateful beyond words, and life is good. I have met many wonderful people in my journey, some were taken by cholangiocarcinoma and some fight on, some are NED, and all are heroes. I am only here to let all know the surgery can work, it can be curative, life can go on, and it can be good. I have seen patients post that they were told by their doctor ” no one beats this cancer. ” That is an awful thing for a doctor to tell a patient . Many don’t but some do, there is hope people, there is hope, find the doctor that cultivates hope, he is the one that can help you find your path. I hope you do .
Congratulations Bighorn67, sounds like you are on a good path, 9 is about what my number hangs around, which is a good average. Don’t stress, merry Christmas, and a incredible new year . Pat
Hello Grandma05, incredible story, I have read about twenty year survivors but never heard from one, you are a miracle our community should know about, your story gives hope to people facing the same prognosis. Please stay in touch, I don’t mind being outlived (by more than 10 years for gosh sake ) that is fantastic. You should tell the world of this again, your survival technically begins the day you discovered your tumor, so you may have more than 26, incredible .
Judyr, I have had success from a resection, and let’s hope he is operable, if not other treatments are out there. Let’s pray for a resection, my best wishes, PatSeptember 21, 2020 at 1:12 pm in reply to: One tumor is gone and another is just a sliver after 4 keytruda treatments #100450
BillM You are a living miracle just like Matt Riedy thank god you sought out an effective treatment ! Get strong and enjoy life every day !
cdee, First congrats on 14 years past resection, secondly, do you have any other G.I. conditions such as PSC ? This could create symptoms you describe, also, scar tissue can build up where the bile duct was sewn back together causing bilary restriction . Blood tests and imaging are in order. I am surprised they would order an MRCP and not an MRI, which is much less risky and more detailed. If what you describe is pancreatitis and they try to stick a probe into your bile duct it could be a disaster. Every time someone goes though your intestine to the bile duct they risk infecting the common bile duct with intestinal bacteria. I am not a doctor or a nurse, yet I have read many posts and I have seen what goes wrong. A bile duct restriction this long after surgery is unlikely to be a recurrence, my oncologist told me the medical records show the longest time on record between resection and recurrence is 7 years , after that it is the formation of a new cancer . So do not let panic speed you to a possibly harmful procedure. You are a miracle, do not let the system screw things up for you. Go to a center that is known for expertise in this rare cancer. Be your own advocate and I wish you the best, Pat
Fifteen years ago today I had an ultrasound of my gallbladder that changed my life. My primary care physician was in India for his mother’s funeral, ( She died of Cholangiocarcinoma ) what are the odds of that ? The substitute doctor was questioning my alcohol use when he saw my blood test, liver enzymes elevated, until he received the results of the sonogram, and then he said it,,,, “There is a small chance, a fraction of one percent, that this could be something very bad, CHOLANGIOCARCINOMA …. it most likely is not so don’t worry, we just have to make sure this is not that so you must see a specialist, a Gastroenterologist so go check your insurance and select one from the list . That is how it all started, that word, Cholangiocarcinoma , I would have to hear it a dozen times to be able to say it. I waited six weeks to see the specialist, Dr. Peter Greenwalt who ordered a ERCP after which I was referred to a surgeon . By now, it was coming up on Christmas and I was beginning to worry . The ERCP was inconclusive to verify cancer, yet specialists recommended surgery without a definitive cancer diagnosis. I went to surgery on January 26 , over four months from today yet without the certainty we like to have facing life choices like this one, I forged ahead and took first available date . Dr. J. Michael Henderson operated on me January 26 , and that was it, cancer cured . No chemotherapy, no radiation, just go home, heal , go back to work . It seems it was too easy compared to most all other cases I am familiar with. So, with cholangiocarcinoma, I guess it doesn’t get any better than this . I wanted to have a fifteen year survival party and really have the party of my life, to celebrate being alive and able . Covid 19 sort of killed that plan so I will celebrate this amazing milestone myself and with my dog I will embrace today, celebrate being healthy and alive, and help someone today to do something they cannot do themselves. I love everyone I have met through this community, this foundation, and all my connections through this cancer, this journey that began with ultrasound gel being smeared on my belly. My advise to anyone facing similar choices is this, don’t delay, get the test, get the surgery, don’t let the system slow your treatment, if there is a tumor in your bilary tract, remove it, it cannot be something good. Live long and full, Pat
Glenno , Congrats on a successful surgery, sounds like she had a tough recovery, and she has to heal. Everyone is different how we heal, and hopefully she will be getting stronger. Every cancer case is a little different, and my tumor was perihilar but it was smaller, more localized and a papillary presentation, so it is difficult to compare. CC is highly recurrent when it has progressed beyond the membrane that surrounds the bile duct. GET HER TUMOR SAMPLE FROM SURGERY TESTED FOR GENETIC MUTATIONS . She will need adjuvant (further ) treatment with lymphatic invasion, there are many options but genetic testing will steer you to the most effective chemo or trial . I wish her success in her survival, Pat
Wally, I know a woman who has done all these treatments with stage 4 diagnosis and she has done remarkably well. She has travelled and lived well for some years since treatment and has enjoyed NED status ( no evidence of disease ) for maybe four years and counting. It is possible so keep the faith and tell your friend to remain strong, her name is Christie and she posts on the facebook group . She was treated at the Cleveland Clinic as I was , her chemo ended but every case is different , I wish your friend the best outcome, Pat
Hello everyone, for the first time ever the anniversary of my curative resection surgery slipped by me without notice, the 26th of January is a special day for me, the day I was cured of cholangiocarcinoma by a master of liver surgery at the Cleveland Clinic . I had my first scan in 5 years on December 24th, and the results were good, still cancer free , symptoms of my PSC are minimal and there was no notation of restriction or inflammation, and this was the best Christmas present I could ask for. My case continues to go well with no recurrence or complications . For those facing surgery try to remain positive and know it is possible to have surgery and be cured, and to be able to continue on with a good life with cancer behind you. I am still restoring my old Buick and doing heavy physical work makes me feel my age. I still have purpose and goals and a dog in my life, which seem to keep me going. Greetings to all and keep going, Pat
Congratulations Randi, as of tomorrow welcome to the ten year club. Wonderful that you were able to start a whole new life in a new country and a life after cholangiocarcinoma . Your story is a great one and you should consider writing a book as your battle was difficult and you have had the courage to take that on and You are living a full rewarding ( and interesting ) life , it is great . The book would be a best seller and your third career (maybe ) and it would also promote CC awareness . It is good to hear from You, have a blessed holiday season and continued health in the coming year . Again heartfelt Congratulations, Pat p.s. the survival curve levels off after ten years so smooth sailing hereon
- This reply was modified 2 years, 12 months ago by hercules.
Here it is again, the end of another beautiful summer and another year of life after cc. An ultrasound discovered a small tumor in my left hepatic duct in the Hilar region just outside the liver. It took until after new year to be operated on (2.5 cm. tumor) and 60% of liver removed. I was also diagnosed with PSC upon pathology study of my removed tissue. I received no chemo after surgery and thus far have not experienced a recurrence. I changed my diet, quit alcohol, and lost eighty pounds in 6 months and have kept the weight off for 14 years now. I had surgery at the Cleveland clinic my surgeon and savior was Dr. J. Michael Henderson a leading surgeon in this field having authored books on liver surgery and transplant, I lucked out. I had no complications and went home 5 days after a 5 hour surgery and was back to work in ten weeks. Resections are a big surgery so this was about as good as one could expect for results and I am extremely grateful for all I have been given this past 14 laps around the sun. I hope more of us get early symptoms and early discovery and diagnosis. I went to surgery without a definite diagnosis of cancer and I believe one should go for surgery regardless of whatever is growing in your bile ducts it must be removed. Pathology verified the cancer and a permanent cure was achieved. If you are recently diagnosed or operated on I offer this advise, relax, live your life, do what you love, realize it is possible to get years after resection and anxiety is a huge enemy so pursue a hobby or passion,be the best father/wife/husband/son/brother/friend you can be, take care of yourself and keep cancer in the farthest back part of your mind that you can. You will not have time to worry about that if you stay busy. My best to all of you facing this awful disease, may your outcome be positive, PatFebruary 28, 2019 at 6:14 pm in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98233
Hello Jules, mine is not a sad story, I have remained cancer free for 13 years with no recurrence , it is possible. Every case is different so keep the faith and keep doing what you are doing. Congratulations on your recent news and scan ! Remain positive and it is awesome that his cancer markers are trending down , do things he loves and laughter is great medicine so try to have some fun as often as possible, eat healthy and keep his weight up, he can win against this cancerFebruary 26, 2019 at 9:44 am in reply to: My 29 Year Old Son was diagnosed with CC two weeks ago #98220
Jeff, first off welcome, I am sorry for all you and moreover your son have been through already, collect all his records and cd’s of images and keep a file for second opinions and future, have his biopsied material ( I assume the surgeon took a tumor sample before leaving the room ) and then had a pathology report on sample then froze a part of sample, you must request a surgical report and a pathology report and ask if they did a genomic test on the sample, if not arrange your own test to seek clinical trial or perhaps ketruda or other new treatments. Join facebook group for PSC and for cholangiocarcinoma warriors, there are many who are dealing with what you are, I wish you and your son the best, Pat