hercules
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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
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Darragh, welcome to our community of sharing survivors and caregivers, nurses, and others with experience with this rare cancer. As you are a doctor, and a patient, it is hard to give you advise as you seem to be doing all the right things, you have studied us a bit so you know what we are about. Thank you for sharing your story and what you have done so far. Keep spending time with that son of yours and your supportive wife as laughter is great medicine, I wish you the best, Patrick
Taraph, welcome to our community of cancer survivors, many of us have been through what you are explaining. Scan time is a nerve wracking thing. Personally I disliked drinking the stuff before that it distracted me from thinking about the outcome. Your margins were clear, the surgeon feels confident he got all of it. It very likely will not return, and I will not cite statistics here but I will say please remain hopeful, I always held hope on hope, mine was the winning ticket, I will make it, I am not done here in this life and do not dwell on the ‘what if’s ‘ Your mother will do better if all remain positive, and she has done great so far. Just hope for the best, Pat
Kate, I am sorry your doctor does not have a more positive outlook, there is a woman I met at the conference in Salt Lake last year and her case was similar to your husbands,in short she had a very positive response to Gem/Cis chemo, not that all do please know it can work more than just temporarily slowing the advance of cc. Her cancer , when viewed by a follow up scan, had shrunk up and responded so well that her doctor decided to do a resection. When he opened her up all of her cancer was necrotic or dead. The surgeon said he never had seen anything like it. She had PSC as well and approached me for information on how I have managed my PSC with no further complications. So I have seen her since, she was operated on in the same hospital I was which is just 15 miles from my home, she stopped by after a follow up, and she is doing very well, her name is Christy and her story is on the facebook group for the cholangiocarcinoma foundation, and she is doing very well as I am, twelve years past diagnosis and with PSC, so don’t lose all hope, it is possible for his case to go well, and I hope it does for you all. My best, Pat
Joy, first congratulations on your husbands successful surgery, many are inoperable upon diagnosis, so this is a great start. The bile duct, common bile duct and such are very sensitive tissue, a mucous membrane more like a sinus than a intestine, it is very irritable even for an ERCP wire to pass through it can set it off into a case of pancreatitis which is a wildly inflamed common bile duct, so when it is cut and sewn back together it can be expected to be irritated a bit to say the least. Don’t be alarmed at such trivial chemistries of the bloodwork at this early stage of recovery. Hope for his appetite to return, his strength, first walk on the floor helps everything move again, encourage him to get out of bed, set a goal, the nurses station and back, so on. Just go for good healing and to go home. As Mary said, the plumbing needs to get moving again, I wish him the best, Pat
Randi, Merry Christmas ! It is good to hear from you and that all is well. Eight years post whipple is awesome, and I have taken a break when needed, I am glad you are back and kudos on eight years, keep up the great work, you inspire many facing what you have championed, may the coming year bring all you wish for, Pat
Hello Gavin, are you going to the conference this year? I am hoping to meet you in person if you are, Pat
Oh my, I know she was dealing with many complications from her lengthy battle, I am so sorry for her family, which she loved and spoke of often. She will be missed, Pat
Wayne, as Mary and Melinda have said, much can be learned from your pathology report, you should request a copy from your oncologist the next time you see him, also a surgical report, for your records, personal knowledge of what was done, and also if you see a new doctor in the future you can make a copy for him/her be it Gastrointestinal doctor or other. Your doctor will assess your results and recommend either further treatment or no further treatment depending on his experience and that of his associates, my doctor recommended no chemo, and he said he would order it if it would help any feelings of anxiety if I wanted, I did not want it just for my state of mind, and back then, almost twelve years ago, he said it would not have an effect on my tumor, which was moderately differentiated with a papillary presentation, no lymphatic invasion, clear margins . You will know more about your case, and your doctor will know you did your homework and you are paying attention.I am not against chemotherapy and if I had a doctor recommend it in the future I would take it, so my take is do what your doctors say, they saved you so far, your spiritual oversight is good so things will work out. I was blessed with many great breaks, and my case went about as good as one could hope for, and I am very grateful and I want to be a voice and a presence that I didn’t have when I was where you are, that is why I am here writing this, I am immeasurably grateful for all I have gotten. I am grateful to be here for you and others like us, may your case continue to be like mine was, Pat
Welcome Wmeisel, your questions are perfectly normal and common. Eat healthy, avoid greasy fatty foods for a while, alcohol should be avoided for a while, congratulations on a successful surgery, Ten weeks is a good average for a return to work, depending on your workload, How can you fight? Get strong again, maintain your weight, exercise as you feel comfortable, don’t stress the stomach sutures, your stomach muscle is stiched up and it will always be a stitched up muscle, because muscle tissue does not heal, it will form scar tissue around the sutures however it will be held together from now on by stitches so dont pull hard on the stomach for a while, it will get stronger but it will never be what it was. That is my answer for your questions, good luck, Pat
Hello Bob, I am sorry about your brother in law’s late diagnosis, too often symptoms that even start testing come late. I recently went back to see my old oncologist at the cleveland clinic and I am very disappointed with my recent visit. I went for a few reasons. I wanted a copy of my surgical and pathology report, which I did recieve, making the visit at least not a total waste of time. Secondly, I wanted to point out the fact that my pathology report indicated “Either primary or secondary schlerosing cholangitis ” present in bile duct. None of my doctors ever even pointed this out and never explained the long term effects of this condition on my liver. It puts me at elevated risk of re-developing cholangiocarcinoma ( he told me if cc showed up in my body again it would not be a re occurrence it would be the manifestation of a new cancer, likely with a different genetic mutation. My first tumor elevated my ca19-9 to 25 and after surgery it dropped to 10 and stayed there for years (it is now 6 ) my insurance will not cover the ca19-9 marker test as they say it is not a accurate way to watch for the cancer’s return.So I pay for the test out of pocket. Third I wanted to inquire about a medical marijuana card for ohio cancer patients, and with PSC or SSC I have a scarred up, inflamed bile duct that is fertile ground for a new tumor to pop up, I have used cannabis since surgery for appetite, pain, and I believe it interrupts the step from scar tissue to cancer. I am not a doctor or biologist, however between the anti inflammatory drug (meloxicam) and the cannabis, it keeps the bile duct open and flowing and not an issue this far.He said his employer, the cleveland clinic, will not permit their doctors to recommend cannabis to their patients, so now what? I was hoping to get a card so I can possess this compound I have used for nearly 12 years with about as good success as a cholangiocarcinoma survivor with PSC. could hope for. The Ohio medical cannabis program was set up by law enforcement leaders in Ohio, not doctors or pharmacists so of course it is just a public relations scam. I am disappointed in all of them. Patrick
Thank You Darla for your upbeat reply, and Positivity, I am glad your presence on this site has continued,you have a wonderful way of writing thoughtful, supportive posts. My reference to human perils other than cc is many things can go wrong in our lives, we are all brought here by this one awful disease and life is temporary, live life as such, cherish every day you get, do all you can while you can,do it today. If you are a caretaker or a patient or a family member, do what you love and do it often, do what someone else loves and do that often too. Life is a swift moving trolly, get all you can from the ride, it’s over before you know it………Pat
Hi everyone, I am pleased to share today is twelve years past discovery of a tumor which was discovered in my left hepatic duct which was later determined to be cholangiocarcinoma. No treatment at all since a january of 06′ surgery. My tumor was found early and was slow growing, my doctors were excellent and I was just 49 years old at that time, all of which helped with a positive outcome. My pathology report noted Primary sclerosing cholangitis which is present but controlled with an anti-inflammitory drug (Meloxicam) one pill daily and that is it for my long term treatment. I am going to see my oncologist for the first time in 5 years to ask for guidance on long term ways to monitor and watch for a return of the cancer. I am hoping for more than blood draws as a monitor, perhaps an occasional ultra sound as that is the type of image that found the first tumor. I have done well until now but I really don’t believe we are ever really out of the woods, the trees are just farther apart. I am going to celebrate a little today…..Yay….Pat
Hello everyone, today is the end of summer, beginning of fall, and my cancer anniversary, twelve years past diagnosis of Hilar cholangiocarcinoma and P.S.C. and have just completed another year of cancer free life. The elderly woman I have helped for four plus years passed away July 3rd. after 96 years of life, and I witnessed what life is like in a worn out body, living forever isn’t a viable option as being human has it’s limitations. We all want a long full life yet the physical reality is many things can keep us from achieving it, Drugs, alchohol, disease, accidental injuries, contagious illnesses, wars, all shorten lives, and it would be nice if we could plan our lives like a vacation or a business, but we cannot, as there is the uncertain, unforeseen future. Therefor we must take what comes and do the best we can, seek the best help available, and hope. Live your daily life, and somewhere in there in your busy day, no matter how tough it is, think about someone else. This little act seems to change your whole burden, and people deal with many difficulties everywhere everyday.With turmoil and chaos around the world, regimes attempting to threaten lives by the thousands and yes, there is even uncertainty for the healthy humans as well. I have gotten much in my life, and I learned the most valuable thing is not held or sold, it is your happiness. Enough about life, My story began 9/21/05 after an ultrasound revealed a small tumor inside my left hepatic duct just outside my liver. Next an ERCP to do brushing and biopsy (negative) yet my doctor that did the procedure suspected cc and recommended resection of my liver and bile ducts. I was operated on at the Cleveland clinic on 1/26/06 with negative lymph nodes and clear margins. Pathology indicated the tumor was a “papillary type” which is not common for cc. and the cancer was contained within the bile ducts and had not ‘gotten out’ as he put it. It was recommended that I forgo chemotherapy as it would not help. So my last real treatment was surgery. I have appetite issues which cannabis helps with, bilary restriction issues from the PSC which for now are helped with an anti-inflammitory drug called Meloxicam, one 15mg tablet a day. I eat healthy, walk my dog daily, pursue my hobbies and try to help someone, somehow, every day. Things have gone well for me and I hope in the future more of us can be in the ten year club, take care, Pat
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