Hello Everyone, it has been a few weeks and here is finally my story with a happy ending. Sorry in advance for this being so long....

At the end of December 2010, I woke up with jaundice and went to the emergency room of a hospital that is local to my home, suburb of Chicago. After numerous tests, I was told that I had cholangiocarcinoma, bile duct cancer.

After talking to a friend who is a radiologist in Dallas, she told me that while the suburbs are great to live in, it is not the right place to go for life or death situations. She suggested a very famous doctor who is director of transplant of organs in Chicago. After I met him and took more tests, he agreed that I had cholangiocarcinoma. But because he has only seen a few cases, he suggested that I go to Mayo Clinic in Minnesota for further evaluation.

After getting approved with Mayo, I took more tests and met with an oncologist who said that I do not have cancer but suggested I take more tests. So after 2 more weeks of tests, met with more doctors and said that I do have bile duct cancer and probably colon cancer also. So back again for more tests and I seriously dont think that an abdominal test was missed. lol .... So 2 weeks ago, I meet with 3 doctors, one being the surgeon. He said that Mayo doctors do not have any clue what I have but they do know that the tumor in my bile duct does not belong there and it must come out. They said that after it is removed, they will figure out what it is. Surgery was the next morning and lasted 6 hours.

It took less than 24 hours for them to figure out that I had Mirizzi Syndrome, Type 2. Again, a very rare case. They said that I was a very very lucky lady and Mirizzi mirror images Cholangiocarcinoma and this is why everyone was so confused.

I am writing this to tell you how important it is get a 3rd & 4th opinion. It is also important to go where your doctor has treated cases of this nature before. So please, read this site, although heartbreaking, it is very important that you are your own health advocate.

How am I doing? While I was at Mayo (they removed the gallbladder and common bile duct & replaced it with my small intestant), I got an infection and am at a friends with a large open wound. I have someone come in and change the bandages 2x a day, probably for another 4 weeks. But other than that I am great and I thank God everyday that I am alive. So while I am still weak, please let me know what I can do to help with this outstanding organization or if I can help any patient or help this site. I was brought here for a reason, so let me help.

Again, my message to every bile duct cancer patient or caregiver... PLEASE GET A 2nd, 3rd & even a 4th OPINION!!! Miracles do happen and never ever give up. God Bless everyone on this site and prayers go out to everyone one of you.

Randi, make your return flight on Friday and the last flight. Because so many people leave for weekends (Mayo staff) that if you make your return flight on Thursday, you will not be able to fly standby on Friday because it is over booked.

I have been flying every week from Chicago every week and the tickets run over $500 because I never have an advanced purchase. BUT I keep reminding myself that you can not put a price on health and especially CC. wink

Because I have flown so much, I immediately learned that the airline staff in Rochester understands patients do have appts that cancel or finish earlier, so I have never been charged a penalty in Rochester. But remember that they are very small planes and only delta & american go there. Now another option is fly into Minneapolis and take the scheduled bus which is only 90 minutes away. Hope this helps....

Tests finished today and flying home tomorrow am. Learn all my results on Tuesday.

Your husband is so young, I am sorry for you and your family. How is he feeling? When I found out that I had CC, I immediately changed my lifestyle. I ate only fruits/veggies/grains and I hired personal trainers and exercised daily. I had to get my body into a fighting machine, ready for whatever is coming towards me. My 2nd doctor told me that cancer does not kill, it is what it does to the rest of the body that you need to be careful for, so I started with me... at least it was something I can do while I wait. Now Lainy suggested go get a 2nd and even a 3rd opinion. I can not tell you how important that is. It has been 3 months and I have not been treated yet, as it was important to talk to many doctors as possible, gather the information, read everything I can and after this Tuesday, I will make my decisions. But I still feel fantastic. While I continue to feel good, I have been teaching my staff how to run my business if I go before my time. They have stepped up to the plate and I am so proud of them. Breathe, it will be ok and please visit this site often as this is the best support on the internet.

I bet it felt so good after you said that, congrats! And if it will put closure for you, write the letter!

Hi Randi, congrats on your MRI!

Tomorrow I leave for Mayo (MN) for the 4th week in a row... more tests... After 2 doctors/2 hospitals at home, I called Mayo Clinic. The first doctor (oncologist), told me that there was no cancer on my liver or anywhere. But he decided that he needed more tests. The next week, I get more tests and then meet with Dr Rao and Dr Sanchez and and find out that I do have cholangiocarcinoma but it is not near the liver and can be cut out. (And they think I have colon cancer also.) So I leave tomorrow for a few more tests and then on Tuesday I go back and I meet with the doctors and surgeons for a game plan. But they were very blunt and if the tests show I have cancer on my lymph nodes, they can not help me. (I have Plan D ready).

What impresses me the most with Mayo Clinic is that there are hundreds of doctors in each category and they talk and consult with each other. (Mayo employs over 33,000 people in Rochester only)

I have stayed at many hotels, but stay at the Kahler Grand, which is across the street from the hospital and clinic. They have a cheap rate for $79.00 and it is worth the convenience.

Good luck with your appt and keep us posted!!

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(10 replies, posted in General Discussion)

I have cholangiocarcinoma and I prefer to respond with a positive attitude daily. Every morning when I wake up in my bed and my feet touch the floor, I know it is going to be a great day! Think positive... dont think about what you are going to miss, but think about that very minute you are living.

This disease has given me so much (besides the obvious)... I never knew how much I am loved by friends, I am so blessed. I dont work 80 hours a week anymore, I stare at the moon at night and play in the snow during the day. I have been eating healthy & exercising daily and loving it. I will continue to fight every minute of every day and I will not let cancer win. And this is how I get through my days!! I wish you luck and please come back to this site often, it is the best thing I have found since I was diagnosed with cholangiocarcinoma.

Pending my health, I would be happy to do whatever you need from me as I am only an hour away.

Cathy

$22292.68!! That is fantastic, as yesterday was $5400.00. Thank you, thank you for all who have fought to help us with this horrible disease, whether it is with money or volunteering. wink

Cathy

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(13 replies, posted in General Discussion)

Oh Andie, I am sooo sorry. I dont know what to say but hang in there. Cancer has not been in our family except my mom who had brain cancer 20 years ago. I felt helpless, there was no internet and no books written on cancer. All I could do is be by her side everyday til the end.

Hugs coming your way!!

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(9 replies, posted in General Discussion)

wow, wow wow... I am shocked at not only the world is unaware of CC, but the doctors in this country also. I wonder how many people are walking around with this disease and do not even know it. 

At that time, I was working 80-90 hours a week and I thought that I was wearing socks to many of hours of the day so after a few months with no change I started wearing flip flops to work, to let my feet breathe. And within a month, it started getting cold and no change in the feet.... and then months later, jaundice. Thank goodness for jaundice and the internet. smile

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(17 replies, posted in General Discussion)

Hi Kathy... my doctor referred me to mayo and I told Mayo that when I called them. I too was surprised when my doctor did not make the phone call. I assumed that Mayo is busy this time of the year and maybe just strict with who they see. 

I did pick up the referral from my doctor yesterday and will overnight to my insurance company on Monday and bug the crap out of them until it is approved. Mayo was surprised that I have not had a PET Scan, chest xray and a bone test... so I need the insurance before I go but I will make the appt...

Thank you
Cathy

I woke up with jaundice but after being diagnosed I read the symptoms and realized that I had other signs but ignored them. This past summer I had, what I thought was athletes feet and put every powder that was made to get rid of it and I thought how strange that it was both feet and only on the bottom. How stupid was I? wink After the stint was put in to relieve the jaundice, my feet were never itchy again.

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(17 replies, posted in General Discussion)

Kathy, I also would love to hear more about the Block Cancer Center. I read Dr Blocks book, LIFE OVER CANCER and it is excellent. Although I am living the diet, exercise & mind/body that Dr Block describes, this option is plan C for me. Mayo Clinic first, University of Chicago second and if neither hospitals can help me, then I am heading off to the Block Cancer Center in Evanston which is only an hour away for me.

Cathy

Wish I can help but I have never experienced a hospice so I am no help. Good luck ladies!

Cathy

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(17 replies, posted in General Discussion)

I am sorry to hear about your daughter. With Mayo Clinic (Minnesota), they will not do consultations over the phone. They will give you a short interview over the phone and then they take it to their review board and decide if I can have an appointment, which will take 4-5 days before they will contact me. So now I am waiting for the insurance company to ok the transfer and the doctors.

My doctor at University of Chicago told me that I need to go there since they have the best success rate and he has only seen 4 CC patients, me being the 4th. I read somewhere that UoC followed Mayos protocol for this disease and they do not. My doctor told me that they will have it in place by the end of the year, but they are not ready yet. I asked my doctor if Mayo turns me down, will he do the surgery and he said yes because I seriously would have nothing to lose.

Good luck and hugs to you both.

Cathy

Gavin, you can schedule them for once a week and you would get only one email for each keyword that you choose. Actually as much of the research I have done on CC, this site is actually the only site that uses initials. So I stick with Bile Duct Cancer and Cholangiocarcinoma. What I like about google alerts is that you get all of the new info, nothing that you would have seen before. It is free and you can turn it off and on whenever you want. This is a great time saver, something we all could use. smile

Cathy

or sign up for "google alert" and put in CC and Bile Duct Cancer and cholangiocarcinoma... when a new article or blog comes up with the keywords, google will automatically email you the site. Hope that helps!

Cathy

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(35 replies, posted in Introductions!)

I think you have great advice on how to help your friend. I personally have been touched by the out pour of friends who have expressed their prayers and help in any way. I have been blessed with the friends who have come from my past and present to offer rides, care, food, errands and even help me at work. I am touched and blessed every day.

Someone with any disease either clams up or wants to talk about it. (I am a talker) It is something that I think about 7/24 every minute of every day. Having cc will change your life forever. (and you hope the forever is a very long time! lol) Open the door with your friend, start asking questions and see where it goes. You are a good friend and whether he wants to talk or not, do not give up.

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(10 replies, posted in Suggestions)

This week I am meeting my team of doctors for my plan of attack (hoping for liver transplant) and when I know what the plan is, I will be happy to volunteer to do more than just "read" and give my ideas. My life has changed with this disease, (like everyone else) and I know this is where I am suppose to be... :-)

Cathy

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(10 replies, posted in Suggestions)

I personally have never heard of cholangiocarcinoma before I woke up one morning and I glowed in the dark and looked up what caused jaundice. While I love the great idea for the "you tube" promotion, the people with this disease is the story. There are plenty of free (always looking to save a buck) press release programs that we can issue a success story.

There are many "cancer" sites that list the cancers but I never see cholangiocarcinoma listed. Have we approached them to give this site some credit and even a link is great for seo love. 

Cathy

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(10 replies, posted in Suggestions)

Does the Cholangiocarcinoma Foundation have a facebook +/or twitter account so we can tag on so our friends can see it and we can tweet about it?

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(4 replies, posted in Suggestions)

WOW, they are nice! I had no idea what you were talking about and I had to hunt them down... they are great and congrats to the designers, fantastic selection! I will send them out for Valentines Day!

Thank you!
Cathy

Hi Melanie... sorry about your situation. What does your husband say about the move, is he in agreement? While I sympathize with you being exhausted, (I get it, I helped my dad take care of my mom 19 years ago when she had brain cancer) you dont need your husband to feel guilty about having to sell your dream house. Lean more on family and friends, maybe if you tell them your situation and you need help, they will step up to the plate for the both of you.

Good luck with your decision and get some sleep!!

Cathy

Galvin, why cant you just put "Gone but not forgotten" in the same category as Moderator, All Star, New Member, etc, and you just change the posters status and it will change on all of their posts. A simple click...

I am new here and I look for hope like everyone else on this forum. But if I did pass, it would be an honor to have something like "Gone but Not Forgotten" with my user id.