June 2, 2022 at 9:11 pm #101740
It is nice to hear from you, and that you are doing so well. I hope this good news continues, and please stay in touch.
Regards, MaryMay 30, 2022 at 3:07 pm #101736OdieSpectator
Hello Pat… I was just reading your post now and wanted to say thank you for sharing your story… As well as say congratulation on your 15 year celebrations. That is wonderful and so uplifting, energizing and confirming of my own positive outlook that I am going to beat Cholangiocarcinoma.
I also had perihilar CCA staged at pT2aNOMO. In October 202o I had 2 liver re-sections back-to-back to get clear margins… resulting in 80% of liver removed. I recovered nicely from surgeries and had chemo and then radiation/chemo at the end of my treatment. I finished treatments in July of 2021 and have been scanned every 4 months since. So far all my scans have been NED which I am <span style=”text-decoration: underline;”>super thankful</span> for. But as you can relate I live with a constant underlying anxiety and always super anxious to hear the results of the scans. I stay super positive, but sometimes can’t help think of the scariness of this disease. Hearing your story is going to help me brush away those “scary” thoughts and only focus on being positive. I’m being treated by the VERY best at USC Keck/Norris, and all of my doctors have been excellent.
October 2021 was my first anniversary after surgery, and this July will be my one year anniversary post-treatment. I am hoping my health continues to have NED and will join you in celebrating many more happy anniversaries in the future.
Thanks for passing on your positivity and providing hope for all that read your post.
LaurieJanuary 26, 2021 at 6:05 am #100792
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 .September 21, 2020 at 3:12 pm #100451
It is great to hear from you and that you reached yet another incredible milestone. Wonderful news for you and for our community. You deserve a great party as soon as it is covid-safe to have one.
Best wishes, MarySeptember 21, 2020 at 5:58 am #100447
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, PatJanuary 28, 2020 at 6:44 am #99625
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, PatSeptember 22, 2019 at 11:03 am #99101
It is great to hear from you and that you have reached another amazing milestone. Congratulations!!! and thank you for sharing this good news.
Regards, MarySeptember 20, 2019 at 5:24 am #99097
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 2, 2019 at 12:24 pm #98081JanicereneeSpectator
Celebrating with you, Hercules!!!January 26, 2019 at 2:10 am #98054
Hello everyone, today marks the thirteenth anniversary of my resection surgery at the Cleveland Clinic. My PSC symptoms are still tolerable and most the time without issues. On 1/26/06 I went into surgery at 8:30 am and I woke up about 3 and without my knowledge I was beginning my second lease on life. I went through all the uncertainty all of us go through and I always held hope this would be O.K. and that this would pass. Many scans, blood draws, I did not have this website to access, so my information was limited and vague, there was no facebook or social media ( my how the world has changed in this 13 yrs. ) and I was scared. I attended local cancer support groups but early on I had not met a single person with what I had. I asked my doctors about how many of his patients do well, he said many but could not introduce me to any At the foundations annual conference, I was in a room with over a hundred of us, it is difficult to describe the feeling, the presence of so many that have stood by the great void this disease creates in your life, the threat to our very existence yet here we are all of us at different places in our journey and we are HERE. I will be attending my third conference this week and I am excited to meet new survivors and the many familiar faces from last year. The foundation has made this cancer a less lonely place, a more informed journey, and less frightening. I am proud to be a part of this informational and emotional support site for patients to come to. I hope others can find the comfort I have here , it has made this last thirteen years not so lonely, and it has helped me win. Yes that is right, I feel I have won the biggest lottery jackpot there is, and I try every day to show my gratitude. It is possible to win against this cancer, you just have to believe it. I wish you all my best, PatSeptember 21, 2018 at 2:21 am #97543
Today is my thirteenth cancerversary, the day my tumor was accidentally discovered during a ultrasound of my gallbladder. I am grateful for another year of living life. I had pain on right under ribs which led to an ultrasound which found the tumor, ERCP next determines half of liver needs to be removed. liver was resected January 26 of 2006 with no complications, home in 5 days, returned to work in 10 weeks. finished career and retired in 2010. Then eight years of retirement, there has been no chemo or other treatment. Pathology indicated a 2.5cm papillary tumor and a bile duct condition called primary sclerosing cholangitis. I have appetite problems and sleep issues, but no recurrence. I am doing well, started seeing a chiropractor this year which has helped with the pain in my shoulder incredibly well. Cannabis has helped with appetite and insomnia. My dog keeps me moving and makes me smile often. My Cholangiocarcinoma was surgically cured and life is good. I hope for more of us to see this kind of results in the future, be well, PatMarch 3, 2018 at 6:18 am #96691
Had my spring blood draw, and all seems good as far as that goes, I don’t have my full report in front of me I do remember my bilirubin was 0.02 and my ca19-9 was 5 which is the lowest I have ever seen either. I am not sure if it can be too low , I see my Gastrointerologist in a month to verify but I think low is good on both these numbers. He didn’t want to do a scan as he felt there wasn’t a need to although I have had some pain in the liver / lower right side as I have been pushing my limits on lifting things ( I’ve been splitting wood and building a 455 buick motor for my car for which all the pieces seem to be gravity loving objects ) so much for don’t lift anything heavy. So I can’t whine about every ache and pain, unfortunately at twelve years out the world doesn’t come running every time I have something heavy to move or lift. Therefore I find myself doing more than I should when duty calls. I will do what I can and pursue a happy life and enjoy quiet moments in front of the fire yet this requires preparation and hard work, which is good exercise and keeps us balanced. For now I am doing well and hoping for another fun summer. Be well, PatFebruary 11, 2018 at 5:08 pm #96625
Cathy, meeting you and your wonderful daughter was a highlight for me as well. You are a HERO and a warrior too and I can only say wow two transplants and your whole story should be here above mine ! I hope all goes well for you and I have come home inspired to see doctors and address everything and do tests and take a look where needed. I am looking forward to seeing you next year so lets take care of ourselves until then so…. until then, PatFebruary 9, 2018 at 12:53 pm #96601jathy1125Spectator
Hercules, you are my HERO, I was so excited at conference to meet the famous “Hercules”!! I finally had met some one with more CC longevity than me and look up to!! Your presence at conference was one of my highlights!! Keep inspiring!!
CathyJanuary 26, 2018 at 5:41 am #96533
Here it is….January 26 again, the day that a cleveland clinic surgeon performed a curative surgery on my hilar cholangiocarcinoma. The best part is there has been no recurrence and no further treatments. I have lived the best years of my life since then, a gift that I continue to collect on to this day. My surgeons name was J. Michael Henderson aided by dr. Mackey, a young resident at the time but a great doctor emerging into practice, and I am grateful beyond words for how my case has gone.Dr. Henderson has retired since then, (so have I ) and I wish him a long and happy retirement. I did not have this website back then, I remember hoping to meet someone who has walked this road, and done well, I asked my doctors about how many patients they had that have done well, and they said many but privacy laws were just emerging and they could not cite specifics. I found this site in 2012, so I went 6 years with no real information or knowledge of statistics. The numbers are scary if you know odds and percentages and perhaps it was best I was unaware of the odds I was facing. I did well, outlived my dogs, rescued another, and have continued to live a happy rewarding life. I love sharing my story here as it fulfills a role I wish was present when I first faced this awful disease with most of it a big unknown, and I did not get beaten by fear. I am here to share my story and hopefully encourage someone facing the same huge chasm of unknown ahead of them. It can go well and in spite of a scarred condition known as primary schlerosing cholangitis, discovered in pathology of my bile ducts removed with the gallbladder. This condition elevates risk of the cancer forming again,however thus far it has not. I always held hope that it would not, even without an example of success, as my case has become. I remain grateful and hope to give back any way that I can.My tumor was discovered early and created pain while just two cm. and was operable. I went home 5 days after surgery, and went back to work 10 weeks after. I am able to do everything I could before other than lift heavy objects. I was 49 years old at the time of diagnosis, and at 61 I feel good. I have arthritis and take an anti inflammatory medication that helps me . I have a restriction in the bile duct which the arthritis meds seem to help with.My name is Patrick, and today, January 26th, 2018 I am celebrating 12 years of being cured of cholangiocarcinoma ! What a wonderful proclamation that is to write….may god bless all facing this cancer,I hope more of us do well in the future, Pat
- The forum ‘Survivor Stories’ is closed to new topics and replies.