hercules
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Dear mags… I have shared your sorrow reading you post, I am so sorry for your loss. Anyone who has gone though this hurts deeply hearing about the end of a hard fought battle. You can be proud of what a spirited warrior he was. May god bless you, Pat
there is a website called rarecanceralliance.org. I did a lot of reading in their ‘trials, studies, section and there are all kinds of medical studies from around the world that one was about a genetic study of different samples from around the globe. another fascinating report was about the same type of genetic study which found the cells in cholangiocarcinoma tumors in bile ducts are actually liver cells that morphed into bile duct cancer cells, the only time in medical history so far a human cell morphed into another. I used to get lost in those medical study reports… Pat
Hello gregg, I too had a very similar situation, intrahepatic tumor,resection and gall bladder…no lymph node involvement, 60 percent of my liver removed, and my doctor, mind you it was 7 years ago, recommended as yours did, to forgo chemotherapy, he said if it would make me feel better mentally that I am doing something,he would prescribe it, which I decided against, and in my case it made no difference, he said after a major surgery like that your body’s immune system is on full alert with all the healing going on the best thing I could do for myself is eat healthy and let the building blocks be available for your liver to regrow in just 4 to 6 weeks time.there are 57 genetic varieties of cholangiocarcinoma worldwide known to medicine and not all behave and respond to chemo, some do.make your own decision and like many cancer after treatments it is insurance as some doctors put it. Good luck with your decision on this just take care of yourself..Pat
You may take and use anything I post here.If it brings a smile or a laugh to any individual or group I have succeeded.I hope to make you smile again…I would like to add that one key thing to long term survival is to teach yourself to not worry about things you cannot control,I remember shortly before my surgery I was putting away christmas decorations and thinking to myself “will I ever even need these again? ” I had a flood of emotions and I could feel the energy being sucked out of me and I thought no! No darn way will I self destruct like that and I decided what happens is going to happen, be positive and live each day with renewed thanks and energy, do not beat yourself up about what might happen.One of the doctors in my journey said’ Hope for the best, plan for the worst’…meaning to get your affairs in order.Well I believe “hope for the best, strive for the best” and think positive all the way, live one day at a time and make a list of things you want to do in your life story and focus and live all you can.Somehow it worked for me, be kind to all that have helped you,and your mind will be too busy to think self destructively, this has worked for me,thanks Pat
hello Lisa, congratulations, I hope all continues to go the right way.You asked in my intro the name of my surgeon, he is Michael Henderson, he was in semi-retirement when he did my surgery,He too was a wonderful doctor (in my opinion and the best) and the entire staff there was as professional as any health care system I have seen, I wish you great success and I know you are in good hands.
Perhaps women will go to the doctor sooner rather than take tums for a year as most men do before looking into stomach pain at the doctors.
I was unawaare a re-resection is even possible,with intrahepatic tumors as mine, half the bilary tree is now missing and all bile flows through the right hepatic duct which is attached directly to the bile duct below the gall bladder. The amazing thing is the liver regrowing like a lizards tail, but a so much more complex vascular organ with bile ducts and blood vessels throughout , unless a tumor would be in the regenerated portion of the liver, this is why I have not watched vigilantly as I believed my options are much reduced, and to be honest I hate ct scans, the harpoon like iv for the automatiically dispensed strange blue fluid and the delicious milkshakes beforehand, gosh I have missed them. We do whatever it takes but sometimes you begin to feel like a professional patient after a while.
please dont think I have I stopped watching…you are correct about not letting my guard down and I am considering taking a look…news stories can be decieving as I have read about older models of ct machines that put out 20 times the radiation as newer ones I looked at the machines I was being imaged on and there is quite a variety of manufacturers and models.I ended up going where the newest looking machine was…this was just another thing and I have seen how this disease doesnt stop with mos t and I dont feel my situation is all sunshine and lollypops by any means news stories can mess you up as much as they can educate you.
forgot to mention…I now see my oncologist once a year…my last scan was two years ago and upon discussing it with my oncologist I decided to forgo further scans as each is quite a dose of radiation..livers dont like radiation according to my doctor so we just do blood scans…even if this does return I am not sure of what options there are after you’ve been resected and your liver is regenerated I do have primary sclerosing cholangitis so a return is possible but not so likely after 7 years. I have studied much about diet and exersize and I am my own advocate…if something doesnt sound right question it..doctors like to see you are very concerned about every detail…I must be doing something right to have come this far,avoid stress, eat healthy, (bananas are the perfect food) learn to sleep correctly, get a dog to keep yourself moving and to make you laugh…and oh yes laughter is the best medicine you can prescribe yourself to forget your problems so seek it often…bless you all who read this and I hope something here helps you, Pat
It has been a few years (at least six) since I saw my surgical report and biopsy..the intrahepatic tumor was contained inside the bile duct obstructing flow of bile in my left hepatic duct…1.5cm if I remember correctly no involvement with nearby lymph nodes the left lobe of my liver was sickened by the backup of bile according to the surgeon..however on the suggestion of my doctor who initially ordered the ultrasound, I avoided greasy food and alchohol from then on…I never had another symptom or pain until my surgery…without a little greasy food (deep fried chicken wings) and draft beer I might not have known about the chaos going on in my belly until it was further along…going by your websites system of staging I would be stage one…as I said I am blessed or plain lucky over and over…so I try to do something for someone else every day.That is how I am attempting to give back to whatever angels have done their work for me and it seems this site is a great place for me to be for now.Thank you all..Pat
