Topic: My Introduction to the club and trouble finding help for my son

Hello all, I am so happy to have found this group. I have been lurking for a few weeks.    2 years ago, my 50 yr. old son was diagnosed with bile duct cancer, and had surgery at John's Hopkins hospital in Md.
A wonderful surgeon Dr. Richard Schulick performed an 8 hour surgery, called:
a unilateral hepatojejunostomy with Roux-en-Y anastomosis and left hepatic lobectomy.  The wonderful doctor said that the pancreas was fine as were his lymph nodes, and all the margins were clean.  The staff at JH was superb, very caring, and expert.

After returning home after the surgery, he had several severe setbacks, which I won't go into here, except to say he had terrible bleeds and had to be helicoptered down from Central NJ to JH twice and once by ambulance.  All 3 emergency transports within about 4 weeks.   It was touch and go whether or not he would live to reach JH, on one of the flights, but he made it.  When he was finally able to return home to try and recover, and just as he was able to go back to work, Sandy hit us in NJ, and he wound up with 6 feet of water in his home and the family was displaced for over 6 months.  Needless to say, that was not good for his recovery, but he survived, and now 2 years later, it seems the Cholangiocarcinoma has returned. I am not surprised after all the stress he has been under.  My heart is breaking for him, his wife, and his little 7 year old daughter.

The wonderful surgeon Dr. Richard Schulick is no longer at JH, he moved to Colorado and is chief of surgery at the University of Colorado hospital.  If anyone is in that area, and wants a superb surgeon for this type of problem Dr. Richard Schulick would be a great choice.  Now that my son's CC has returned we miss Dr. Schulick more than we can say.

Our experience at JH this time cannot compare with our experience 2 years ago.
After several endoscopies, catscans, and a petscan, and placement of a stent in his duodenum, he was simply sent home, I feel peremptorily from JH,  still vomiting and unable to keep any food down, with a pic in his arm for intravenus nutrition, and told to go  home and find an oncologist for Chemo and that they could do nothing else for him, and it was GRIM.  no other details. no referral, or hint who to go to for help.   He was sort of "set adrift on a scary sea alone and frightened." Well, we are all frightened.
So tho they put a stent into his duodenum,  it did not seem to have helped before they discharged him, and tho he could still not keep food down, they said they didn't understand why.
Has anyone had this experience??

I will only say that we have been struggling desperately to find someone to help my son. 
Sloan Kettering says he would be a 2nd opinion patient, and that without a current biopsy, (which JH did not want to do) SK could not help him, and to find somewhere closer to home.

Another wants to start chemo next week after putting a port in his chest.  Thank goodness we found him, at least he wants to try and help my son.

I am not sure how much to say, and if a moderator read our posts first to monitor them, so I do not say more than I should.  tho I would not want another person to go through what we have, with this particular doctor.   I am very upset after the experiences we have had, feel as if I am about to explode, and hope that I have not been totally incoherent. 

I have been lurking here for a few weeks, and am so happy to have found this site.  Bless you all and good luck to all.

Re: My Introduction to the club and trouble finding help for my son

Oh my gosh, sounds like you all have been through the ringer!!  I want to welcome you to the site and I am so sorry you have a reason to be here.  You will find great support and information from our posters who I am sure will be along soon.

What kind of Chemo do they want to start with him?  Have you gotten another opinion at a major cancer center with docs that are used to dealing with this cancer? I went to the Mayo Clinic in Rochester, MN, Roswell Park in Buffalo, and Sloan Kettering in NYC to get opinions.  Have they said where the cancer has returned to?

I am sure others will come along with more useful information for you.  I am so sorry you are going through this with your son.

Take care and best wishes,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.