1

(14 replies, posted in General Discussion)

Fred, every cancer case is different in some way, the only thing that is always the same is that we call it cancer. That said I will share some things I remember leading up to my surgery. I remember being more excited than fearful about the operation, The surgeon explained to me the importance of the portal veins involvement with the tumor. My tumor was contained in the left hepatic duct and had not "grown through" the sides of the bile duct yet. the hepatic vein runs along the bile duct where it enters the liver about the same area the bile ducts come out. It is easy for this to turn into a big mass which is difficult to dissect and separate healthy from sick cells. I asked why remove half the liver if a tumor is in my bile duct? After my surgery he explained cancer is present in the bilary  tree within the liver like rust on the inside of steel pipes, hard to show me on a ct scan but seeing as there is a tumor further down the duct, it is presumed the liver is also involved, curative surgery requires removal of all possibly involved tissue. That means half the liver or more. Be positive, he's young, you found it earlier than most, pray, many prayed for me, it can't hurt. Try to help him find ways to relax, 10 minutes of quiet solitude a day,  It sounds like his chances are good for a positive outcome, best wishes to both of you, Pat

Julie, I too would like you to know your news is uplifting. Too often I read of  a setback rather than a success, we are with you!  Take each  miracle as they come, Live every day fully, In between stressful times, seek distractions that make you happy... your time is like a priceless family jewel, spread it around wisely and don't use your awake time worrying about what might be. May each year get better, Pat

Also Louie,  my C 19-9  was never more than 8 ever, not even right before surgery so I know this is not an accurate  indicator of the presence of a tumor or active cc in my system. Just like Kris's husband I went into surgery without a 100% assurance this was cancer, I figured so what, cancer or not, something is growing in my bile ducts blocking things up, it has to go. It is possible for it not to be so bad as you might imagine, I came home 5 days after surgery, I did not have any infections or complications, I went back to work , a maintenance job requiring moving around quite a bit, in just 10 weeks, My case went well, better than most I guess , perhaps because it was not so advanced. I was not diagnosed until after surgery as well so cancer or not, something is growing in his bile duct that is blocking things up. I know it's easy to say but don't be afraid, It can go well.  God bless, Pat

4

(4 replies, posted in General Discussion)

Daisy, I am sorry that competition between different hospital systems is slowing your process of making a plan. I was diagnosed in one major hospital network, and the doctor that performed my ERCP referred me to a surgeon in the other major hospital system than his own, citing this doctor as "the best" , all the cd's of my ultrasounds, and medical record could not be read by the other hospitals computers, requiring duplication of all tests, however it all went quickly once the plan was made. good luck, Pat

Louie, when I had an ERCP  they did a brushing of the tumor in my bile duct, (Hilar CC ) and the brushings came back as a type of cyst like cells, and the doctor that performed the ERCP said often the outer cells are not but the inner cells of the tumor are cc , and he recommended having 60% of my liver removed. I did and when they did their testing on the tissues removed from my bile duct they came back positive, intrahepatic tumor was in fact, cancerous in the center, and another cell type on the outside. I believed him and proceded with the surgery as quickly as I could arrange it. they cannot disturb a tumor in the bile duct or if it was somehow opened up it is like a dandillion in a breeze, a recipe for the spread of this terrible disease. Prompt action paid off and as it turned out, I have remained cancer free for more than 9 years . I wish you  and your husband the best, Pat

6

(24 replies, posted in Introductions!)

Melinda, awesome news on your husbands clean scan.... and may all your issues go well, I am sorry his religious values keep him from using anything that may help him, even where it is considered legal for certain medical patients, cannabis still has a shadow over its use for many.... he doesn't have to grow his hair long and wear tiedyed  t shirts to use it anymore. I wish you both continued success and may god bless, Pat

7

(12 replies, posted in Introductions!)

Fred, I was fortunate to have a tumor discovered in my left hepatic duct (right where it emerges from the liver) and had resection surgery Jan. 06' at which time my oncologist felt chemo was not effective for my case,  so my only treatment was surgery by a skilled surgeon called the best liver man in the area by my gastrointestinal doctor. He had written numerous books on liver surgery and transplantation, he is now retired and hopefully you can find a man with great experience in this field. I am able to do everything I did before diagnosis other than lift heavy objects. I am blessed in many ways, other than a big ugly scar that resembles a mercedes benz emblem that spans my abdomen you might not know anything ever happened here. Hope for the best, your son is young for a cc patient, hopefully he will heal well and have positive results as I have.  Use common sense, eat healthy , avoid chemical solvents and toxic atmospheres, fatty foods make the liver work, I avoided them before surgery. I know it is difficult, but try to avoid stress, that is my treatment and advice in a nutshell, I hope your son does well, God bless, Pat

8

(12 replies, posted in Introductions!)

Fred, welcome , there are many here who understand your fear, I for one was diagnosed at 49, which I felt at the time was too young. That was over nine years ago, and medicine is making huge strides on many cancers. Keep the faith, hope for the best, one challenge at a time, don't be overwhelmed  by it all, and be his key support person. He will be in my prayers tonight, Pat

9

(24 replies, posted in Introductions!)

Melinda, welcome to this site, I am not able to advise you on chemo brain, I have had a 60% liver resection and the stress of the first few scans, that was nine years ago , I was not as well informed as you, and at the point you are  I had not yet found this site. The first year I remained hopefully uninformed, come 10 months I did some research and was very disappointed with the numbers that I found. My doctors at that time, in my case, advised against chemo. I experienced appetite problems, sleep cycle problems, and some stress as a scan neared. Pain medication constipated me right after I came home, I used cannabis for pain, for appetite, and as an added bonus it helped me sleep and it helped me not think about the stressful things. If you have a hobby, cannabis helps you get lost in what you are doing, lowering stress even more. Stay busy, if you have a dog, walk him or play with him or her, be positive, seek happiness anyway you can, go to a museum or a show, stay busy and seek relaxing atmospheres and surroundings. I see you are in California so medical cannabis shouldn't be a problem. Some preliminary studies show cannabis may have positive effects in slowing or stopping the advance of cholangiocarcinoma . However you deal with it, I wish you the best. There are many on this site with experience with chemo, good luck, Pat

10

(6 replies, posted in Members' Cafe)

Lainy,  crowd behavior can be rude. Impatience and greed are two things that irritate me about the human race.  I took Gary to a rock concert he wanted to see, the usher led us to our seat as people are rushing about in the 15 minutes before the show,it took a moment to get him from his wheelchair into his seat, a wall of people , the fist few saw us and stopped in the aisle and the group behind couldn't see us and just pushed the crowd into us. For a moment I almost went off, and then, all at once the crowd stopped and all at once woke up to the fact someone is having a difficult time and stop a moment for them. Sometimes people don't think and just go on automatic with brain on 'pause' rather than "play' , and we all can be there. Having a friend like Gary opens my eyes to the shortcomings of human behavior, and it helps me to be aware of others that are unable to keep up with the flow in a crowd. Helping Gary proves to him he is not so alone, we can do things we used to,and I will make this happen. This man was gifted with being alive, it shouldn't be a miserable time,and friends and family are what tip the balance of life. What comes from it is as wonderful a friendship life can give you. take care, Pat

11

(6 replies, posted in Members' Cafe)

Lainy, it is hard to imagine a day in the shoes of a handicapped person, how they deal with daily challenges. One time , while we were out, Gary said "More than anything I miss going out fishing for perch on lake Erie." I have given much thought to those words, and I have found fishing rods for the handicapped online than have a battery and a little motor than winds in the fish when you depress a trigger. One of my goals for this year is to get Gary back out there catching fish ! We used to go fishing all the time, and it will be a challenge getting him on a boat and out there, I am sure I could get one of his sons to help me make this thought a reality that would make my dear friend happy, I know it. That is what makes life worth living.... Pat

12

(6 replies, posted in Members' Cafe)

Oh Lainy, I have said it before, life is not fair.A dear friend of mine fell off a roof while attempting to repair christmas lights on his home. He nearly died, his family looked on helplessly as he clung to life through that holiday season they all struggled with the thought of dad being gone. He did make it, after 10 years of surgery, rehabilitation, therapy, he is paralyzed on his left side, blind in his left eye, challenged every day, with ghost pain from his shattered nervous system, life is is unpredictable. I help my friend when I can, I take him out once a month to lunch and anything he wants afterward. I spent last fathers day with  Gary and his three sons, his wife, and his mother. This family has so much love and faith and a positive outlook it is wonderful. It doesn't have to be cancer that changes your life forever. He is still here and living life, we were childhood friends , and as difficult as every day is, he cherishes his old friends that think of him. I enjoy getting him out of his house which he is pretty much confined to while his wife is at work. If you want to feel unspoken love and appreciation help a friend who quietly needs you. They are out there if you look I would bet, the reward can be an incredible feeling , better than drugs or alcohol. So be kind to a deserving friend, it can be addictive,Pat

13

(12 replies, posted in Good News / What's Working)

Nancy, congrats on 5 years !   When I first read about cc and it's stats I was upset to say the least, and statistics stopped at 5 years and the numbers were not very encouraging. I didn't find this site until I was a six year plus survivor. I have learned so much about this disease, and how blessed we are to have somewhere to talk about concerns. Keep celebrating those milestones ( My liver was resected 9 years ago Jan. 26 ) only once though, you are a trooper, Keep that great attitude,  Pat

14

(23 replies, posted in General Discussion)

Sandie, may your trip be filled with beauty and perfect weather, enjoy ....you deserve it,  Pat

15

(2 replies, posted in Thought for the Day)

Duke, thats beautiful, Thanks for sharing  that one, it's "rich", Pat

16

(42 replies, posted in General Discussion)

Dear Sammie, my heart goes out to you and all of you during this difficult time. Although my case never got as far as your fathers, I did think about that time, and I will say I had two golden retrievers at the time, and of course these animals are completely dependent on their number 1 human, this is a mindset that goes both ways. When my liver was resected, the only thing I wanted was to be home with my dogs, and I believe a big part of my recovery was my programmed mind and soul to take care of and look after the welfare of my furry dependants. Perhaps a big part of  your fathers inability to see the world without him is because of his dog. Show him and make him know Winston is being cared for very well.  My heart  breaks for all of you, Pat

17

(22 replies, posted in General Discussion)

Margaret,  one august evening I met with a friend to watch a baseball game and have a few beers and some deep fried chicken wings. That night I was kept up by a pain in my forward right side. It was not a throbbing pain like most stomach upsets, it was a constant pain, like some other irritation than usual. I went to work looking like I had been up all night, my boss suggested I go home, rest and go see a doctor. I did, he said textbook gallbladder symptoms, ordered an ultrasound of my GB and a soft tissue tumor was discovered in my left hepatic duct, which the ultrasound tech identified in her report as "possible cholangiocarcinoma" leading doctors to start in the right direction. I was lucky how things fell. It took 5 months to have tests and finally be operated on Jan. 26, 2006 , 8 a.m. with 5 days of recovery, no chemo, no radiation, just surgery which showed clear margins and no lymph involvement. Early diagnosis has afforded me a very trouble free survival, perhaps as good as it gets. At nine years later I have a small lump along my scar on my stomach, one small hernia which my doctors say not to mess with, and my life is as before other than I cannot lift heavy objects. Common sense, dietary changes, avoid contact with organic solvents, vehicle exhaust, both things common for a equipment mechanic which I am. That is my nutshell, lots of scans and blood tests over the years watching for possible return. For right now everything is good, I am enjoying life to the fullest, Being diagnosed is perhaps the toughest challenge for the human spirit, a test of mental and physical strength. It is important to not lose track of your hopes, dreams, and goals in life, and to not be beaten by this mentally. I hope something here can help you or others, God bless, Pat

18

(8 replies, posted in General Discussion)

Congrats Derin, What a great christmas present, Best wishes  , Pat

19

(2 replies, posted in Thought for the Day)

Time.... we all hope and pray for it.  We always have a varying perception of it, sometimes it can get away from us. Remember when you were very young, and when Christmas was over, it seemed like an eternity before it would be Christmas-time again? Then as we get older, it gradually seems to get shorter and shorter between annual milestones . My theory on this is when you are 5 or 6,  a year is about a fourth of your conscious lifetime. The mind adjusts for a longer life and looks at everything in  perspective of current lifetime. Every year, a year becomes a smaller part of the whole picture. After many years of successfully taking care of your body, you have cleaned it and fed it and cared for health of many subsystems, time eventually becomes the thing that draws the line on how far you get to go. Every Christmas I welcome its swift return and  I am thankful for every day in between, Facing the possibility of time ending makes the gift of another day more priceless. As every day becomes a smaller part of the whole picture, every day is what you make it. Christmas is the time of year to think of others and to be giving. May the spirit of the holidays be with all who read this throughout the year...God bless, Pat

Derin, My left lobe and 25% of my right lobe was removed. My surgeon said he would take a piece of intestine if he needed it fortunately he didn't, that simplified recovery ( I was eating 48 hours after surgery, went home day 5) . He said he was able to move things around a little and stretch the duct without making a piece, nice...one seam only, not two. all my plumbing is on my right, my liver regenerated very round like an over inflated football. Other than having cc, I am a lucky guy over and over. I went back to work in 10 weeks, and finished my career 4 years later. Most of all my biggest blessing is no recurrence over time. In prayer or deed I thank god every day. I hope all goes well and you can get rid of that drain,  God bless, Pat

Hello Derin, I have posted regarding this topic, and I will share with you what I have experienced with this bilary restriction issues at point of bile duct resection. About 18 months ago I had symptoms of bile duct restriction, light tan stools, mild pain, so I made an apt. with gastro I. doc who is my go to man right now, He ordered an MRI of the bile duct, as he felt this image is more detailed when imaging the bile duct. The radiologist said the opening of the bile duct was down to 3mm where the normal inside diameter of the bile duct is 7 to 9mm. I am nine years past resection, I noticed your doctor cited 3mm as the normal I.D. ....so which is it?  I have read a bile duct is about the size of a drinking straw. Seems to me 3mm is about right. I am not a doctor, I know the duct is more like surgical rubber tubing than a straw, it will stretch and move around. I stretch my midsection a few times a week, one arm up, sideward bend to left to stretch right side, you can feel stuff move a little in there when you do this. I do this because you dont want it kinking up, this little tube has to keep moving around a little. Try to visualize what is in there.Don't slouch to the right where you would possibly kink or restrict it with your posture. Fortunately I have made it 9 years without a stent or a balloon or anything like that. I know a skilled, experienced hand is priceless for this to be done with long term results. The same is true when a stomach muscle is stitched back together, I have one small lump along the stitching and I am very fortunate with this as well. I drink alcohol once or twice a week, I don't know for sure if it is relevant or not,most cc patient probably don't drink, by the same token most have a stent in their bile duct before 9 years. Try the stretching, it may help, good luck, Pat

Duke, maybe 18 months before diagnosis I was prescribed a pill for toenail fungus. It required a blood test to determine the health of my liver before prescribing this drug because " it is hard on the liver. "  I have wondered about any relevance here as well, Pat

23

(2 replies, posted in Members' Cafe)

Kris, tell Mark it is better to be lucky than good.

24

(10 replies, posted in General Discussion)

Well Duke, my analogy is distract yourself by doing what you love, or try something new, just for a while don't look ahead. Mental survival is as critical as physical survival . Faith is facing the unknown and not being overcome with fear. Have faith Julie, it might be a long ride, Pat

25

(10 replies, posted in General Discussion)

Julie, you are at a difficult time in the first year, it is hard to distract yourself from this topic. Our lives are like a canoe ride on a very winding river. We know there is a waterfall somewhere ahead, but we don't know just how far. Don't be so worried about the waterfall that you miss all the beautiful things along the shoreline . Think about what you love to do, make a plan and do it... hope for the best, Pat