• Is there any hope if you have a precancerous Type Ic choledochal cyst and not a candidate for surgery

    Asked by suggi on Saturday, January 2, 2016

    Is there any hope if you have a precancerous Type Ic choledochal cyst and not a candidate for surgery

    The doctor said I was not a candidate for surgery and I think he meant the Whipple. I am only 108 lbs normally and do have other health concerns. Is there another way to cut it out of the common bile duct before it turns cancerous? Thank you.

    10 Answers from the Community

    10 answers
    • geekling's Avatar
      geekling

      I suppose you do not know the story of Pandora?

      She was, according to myth, the first and loveliest woman ever made. She would be like the Eve of more modern culture. Zeus, the King of gods, entrusted Pandora with a box that contained horrible things to be held away from man with the codicil that the box remain unopened.

      Having been part of her creation, Zeus is pretty sure that Pandora will open the box (talk about set up and sexism and deflection of attention from the theft!!). Zeus is really ticked off about the first man, Prometheus, having stolen fire from the gods to give to mankind and separate them from the rest of the animals (so special and stands on two feet rather than four just as do these gods).

      Pandora opens the box, (a woman as a foil of more than a plague against man or misogyny at its best) and all sorts of suffering and things to make one cringe come flying out of the box. She closes it up quickly but there is only one thing left in the box to be in the control of men.

      Hope is left in the box.

      So you see it is always with you and will not abandon you even unto Death.

      As to you being 108 pounds. I am 5'4" and 108 pounds would look astounding on me. How tall are you? I have no medical background but I know there is always another way although there are many times you need to search for it.Seek another and an independent opinion.

      I talked to 8 oncologists before settling on one. He was okay but his team was substandard.

      Best wishes into the new year.

      over 3 years ago
    • GregP_WN's Avatar
      GregP_WN

      I can't give you particulars about your type of cancer, but being an overly optimistic person, I say there is always HOPE, we all wish you the best. I agree, get more opinions, don't settle on just one person that says it can't be done. "People who say it can't be done shouldn't interrupt those who are doing it."

      over 3 years ago
    • barryboomer's Avatar
      barryboomer

      To Me PRE Cancerous means PRE so leave it at that. Move on and try and get healthy. We have millions of pre this and pre that and as long as it's pre....good news to me. Get as healthy as you can.....

      over 3 years ago
    • suggi's Avatar
      suggi

      barryboomer - I am no stranger to cancer - had a mastectomy for BC and lost part of my nose to skin cancer and also have precancerous pancreatic cysts. Those I don't worry about as one can live with pancreatic cancer sometimes for 2 years with chemo but for the bile duct which is a very rare cancer there is not much research and chemo does not really work on this cancer -- the only way to get it is before it becomes cancerous. After that it is a horrible way to go with backed up bile, constant vomiting, can't eat and worse pain than pancreatic cancer. Even tho it is rare I know of someone who battled it and blissfully it is a short life span of weeks to a couple of months soooo that is why I would like to get it out betore it gets to that but seems like the Whipple is the only surgery and you lose about 50 lbs and I am 108 lbs so that would make be 58 lbs in which case I would be dead anyway. Hard to get healthy when you already have other illnesses to begin with like Crohns colitis so diet is a problem already.

      However, I appreciate the input. Thank you and hope you stay healthy and in remission.

      over 3 years ago
    • geekling's Avatar
      geekling

      If you have Crohns you definitely need to work on your eating habits. Jordin Ruben who runs the Garden of Life vitamin & supplement business has quite a good story on how he overcames that particular woe. Amongst the thing he did was to give up dairy. Apparently pizza was killing him. He radically changed his methodology. The movie Fat Sick & Nearly Dead is also about healing via sharp changes in habits.

      I still dont know how tall you are but I now know you are deficient in knowing how to care for yourself. Time to learn. What else do you have to do that is so important?

      over 3 years ago
    • Moxie4ever's Avatar
      Moxie4ever

      My wife Rosy was diagnosed with CC at Stage IV in February 2013. She died 1 year, 3 days later 2/22/14. We went to MASS GENERAL to be treat by Dr Andrew Zhu (I may be misspelling the last name). He is WONDERFUL AND CHAIRMAN OF THE GASTROINTESTINAL CANCERS DEPT. He has a special interest in C.C. BECAUSE YOU ARE PRECANCEROUS, YOU HAVE HOPE. DO NOT WAIT. to get a second opinion or to be seen there. We went there because of him. Also check out the Cholangiocarcinoma Support Group Facebook page. Lots of info there and more than 1000 members. I live in Cambridge and, since you are in Bolton, I would also check out Dana Farber as well as Sloan Kettering in NYC. There are a lot of things happening with genetics and immunotherapy. You already know a lot from what you've written. DO NOT GIVE UP.

      over 3 years ago
    • barryboomer's Avatar
      barryboomer

      Jordan Rubin's story is miraculous...LOVE him and all his products....Check him out.

      over 3 years ago
    • suggi's Avatar
      suggi

      geking - I am also 5'4" like you and am considered "underweight". I have experimented with food and can not eat a lot of fiber so more of a low fiber diet which will not help me I know -- can not eat a lot of veggies and no salads, no tomatoe sauce, etc, chocolate and/or coffee only when I become too constipated as I get inflammation in the lower sigmoid/ rectal area if I lean towards diarrehea (also have IBS) plus trying to gain a little weight. So, I do eat white bread, and some easy on the gut processed food which I presume now is bad for you. I do drink 2 Ensure Plus a day in addition to my meals but not in my metabolism to gain weight - i burn it off with very little effort. I do not live a sendatory life but I do not get enough sleep and I know that does not help and I can't take sleeping pills.

      Sleep problems started with a sick Mom in another state when I was still working and running to take care of her inbetween as she refused to leave her home and come to MA -- she was in NY. I never seemed to fully recover from the few years of just running, running, and finally running on empty.,,,no siblings so all on me.

      I also was one of those "experimental " kids that got radiation for an enlarged thymus gland at birth to shrink it but instead it completely destroyed it and the thymus is an infants immune system and again at about age 6 to get rid of the scar tisssue the first created. It was the new mircle cure and unmeasured cobalt and then the doctor finally found out how bad it was and told my Mom i would be dead by age 16 or if I survived I should neer have kids as they would be deformed. My allergist/asthma doc says a lot of my health issues and many drug allergies stem from this cobalt years ago. I recently had a friend die of thyroid cancer who was also a cobalt kid. I have thyroid nodules they are watching and almost died a few years back from a thyroid storm - was in the telemetry unit of the hospital for 4 days as they thought I was going to have a heart attack and was given the radioactive iodine pill that brought my numbers into range. They also think it was the cause of my BC. I walk for my osteoporosis and take Evista as that is the only one I am not allergic to. So, anyway -- I am kind of at aloss re: diet -- I have tried veggies, etc and paid for it colon wise so, yes, I do need help. Right now I want to gain weight but do not have much sugar or dairy. The most I ever weighed was 125 lbs at 9 months pregnant.

      over 3 years ago
    • suggi's Avatar
      suggi

      Sorry - spelled your name wrong last post - just wanted to add -- they are blaming the chronic leukopenia on the infant radiation also. They do not know if I had Thoroplast in addition either which is a known cause of bile duct cancer and some others. All those records are gone -- probably purposly destroyed. That was abandoned by the end of 1948 or so, Being 77 so far I may have been poisoned by there stupidity but have overcome a lot and the rest I live with, There is a site for infant radiation back in the day and I was amazed at all the input and diseses and cancers it caused. You can tell by the doctor telling my Mom that ....that they knew they made a mistake, esp. those like me who were over radiated and instead of shrinkage the thymus was completely irradicated. Some folks actually looked into compensation but lawyers told them "lost cause".

      over 3 years ago
    • suggi's Avatar
      suggi

      I found the link for infant radiation if anyone is interested as there may be more on this site who had that radiation done. It caused a lot of problems = my sister actually died at age 16 from a pituatary problem stemming from infant radiation and I also have a deformed upper pallate in my mouth so if I ever needed false teeth I would have to have my complete upper bone structure redone. I do not know if I am allowed to post it here but I believe there is some way to do it privately.

      over 3 years ago

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