New with Questions

Please see my post under introductions – “My inspirational Story”. I am not sure of your mom’s entire case, but if you can not find a dr who can help, please contact Tomoaki Kato, M.D. He is affiliated with Colombia University in New York, NY. He is the most amazing surgeons you will ever find. Please research him & best of luck. My prayers are with you.

Thank you Susan, I hope that we never progress beyond where we are today.

My MIL was diagnosed in August, golf ball size tumor at the junction. She is being treated at Mayo in Jacksonville. Initially they felt she had cc but biospy came back no cancer, dr’s felt it was still cc…so she had a ercp and it did come back positive for cc. Dr Nguyen at Mayo Jacksonville is who is treating her. Surgery was possibly an option but with the info the dr’s gave her she didn’t have really any hope that it would help. Although Mayo and Dr’s have not given us any bilb #’s or markers. She doesnt want to know anything so therefore they aren’t going to insist she know. The dr’s were not negative and said they would have the best in the world avail for her surgery but she has opt’ed for no treatment at all. It’s hard to accept for all of us but she is very strong in her belief. She was went to the doctor initially because she just wasn’t feeling well and a little jaundiced. They immediately placed an external drain and was in the hospital for about a week. For the next 6 weeks or so, she went downhill very fast. She couldn’t even get up and down the hall way, but no pain thankfully. The drain was draining all of her necessary fluids and nutrients out. She finally got a plastic stent, WOW talk about a turnaround in a few hours and of course some fluids too. Stent lasted about 7 weeks and no another one and she’s feeling pretty much back to normal except for fatigue early in the afternoon. She still has absolutely no pain or discomfort at all, just fatigue in the afternoon. She’s loosing weight, but of course she’s not eating like she use to and the cc is growing too. Since we have the diagnosis, we can only not hope that she stays exactly where she is for a very long time. She’s at such a peace with her choices, we on the other hand are having a hard time accepting no treatment, but we respect her wishes.

As far as the hospital, we have a male friend who was being treated there for pancreatic cancer, 6 mos was all he was given, 2 years later he is still with us – yes tired and fatigued alot. He tried chemo and some alternative treatments there with no success the first 6 months, but no treatment at all for he last 1 1/2 years. He loves the doctors and treatment he received there. I hope that you can find that miracle needed for the cc and that the surgery is an option for you all! May god bless you and your family with some good news. We were given 6 months, we are now 4 1/2 months down that road and other than knowing she has cc, she’s pretty much symptom free!

Hello EA…..I would like to follow Gavin and welcome you to our site. Yes, we have numerous members from Florida and hopefully, they will address some of your questions soon. In the meantime you might want to use the google search function, top, right, and enter “Florida.” This will allow you to read up on previous threads. I am a strong believer in second, or even more opinions. This cancer is rare and you would want to make sure to gather information from those physicians “very familiar” with this cancer. Interestingly enough, many physicians I have spoken with appear to agree with me on this.
I believe that some patients worry that they may offend their physicians however; I don’t believe that to be the case.
Just make sure to have copies of all records including, blood tests, CT scans, and physicians reports, etc. on hand.
From what I have learned brushings often come back as inconclusive, as can biopsies. The same goes for the CA 19-9 marker. Some people lack a specific protein therefore; this biomarker is not valid for all people.
Good luck on the upcoming visit with the surgeon. I am crossing my fingers for good news coming your way.
Due to the high volume of postings threads easily can be lost on this site. I find it helpful to repost unanswered questions. So, if you don’t receive any answers please, ask again.
I am glad that you have found us and am looking forward to hearing much more from you.
Best wishes,
Marion