Friday, September 23, 2011

The roller coaster continues

Sorry I didn't post yesterday.  I was exhausted by the time we got home last night. Yesterday we went to UIC Medical Center.  Bill was to meet with the oncologist for a second opinion.  We were both very nervous.  We have not spoke to the regular oncologist after the ERCP.  We both feared the oncologist from UIC would tell there are no trial studies and he would recommend discontinuing chemo therapy treatments.  

The oncologist said there were no trial studies in our area that he is aware of.  He did say that he believes Bill should continue with chemo therapy.  It will not cure him from the cancer but it is slowing down the progression.  He said he has seen many patients like Bill who has lived several years.  I asked about the pain Bill is experiencing.  I asked if it could be caused by the gallbladder (ultra sound showed gall stones).  He said that could be causing the pain.  UIC does robotic surgery for this and it's a rather simple procedure.  Bill agreed to meet with the surgeon.  At this point he is willing to do anything to get relief from the pain. I mentioned to the oncologist about traveling in December and he said he thinks Bill should be fine then.

We waited for the surgeon to meet with us.  We were told that the surgeon himself was unavailable and his assistant would speak to us instead.  He looked over the reports and PET scan.  He seemed more concerned about the tumor in the liver that was treated in March with the SIRT procedure.  From what I understand it's no longer cancerous and more like dead tissue.  He wanted the surgeon to go over everything and talk to us.  We had to walk a block to another building to talk with the surgeon's nurse to schedule an appointment.  She told us the surgeon can see Bill in 2 weeks.  I explained to her that Bill has been off chemo for over a month.  With the possibility of surgery he could not resume chemo.  I didn't want him to wait for another 2 weeks to see if he may or may not have surgery.  She said the surgeon was in a meeting and if we would wait he would talk with us.  

We finally saw the surgeon.  He went over everything.  He seemed more concerned with the liver and the bile duct then he did with the gallbladder.  He said he recommends removing a section of the liver.  He explained leaving it can cause Bill to develop jaundiced and could be causing pain.  He also said Bill would respond better to chemo.  He was concerned about the bile duct.  He said the "tumor" could be caused from many things.  It's not near the cancerous areas.  He said it could be a lesion caused from the SIRT procedure.  He said he would like to examine the slides that were taken at the ERCP last week.  He also said he would like to speak to all the physicians that are treating Bill so they can treat Bill collectively and not individually.  He said that after he receives all the information he needs and talks with the other doctors he will call us.

4 hours later we were finally on our way home.  Bill was in a lot of pain. We were both hungry, tired and stuck in traffic during rush hour.  This morning, I called his regular oncologist office.  I wanted to see if there was a different pain medication Bill could try since the current one is helping very little.  The nurse called back and said the doctor wrote out a script for something else and we could pick it up right away.  I called the hospital where the ERCP done.  I needed to get slides plus the pathology report on the tumor.  I was told there was no report and I need to ask the doctor who performed it. 

We went to pick up the script.  The oncologist saw us walk in and told us to take a seat, he wanted to talk to Bill.  He said that Bill is looking good and he doesn't look jaundice any more.  He wanted Bill to have blood work done to see if the liver enzymes are low enough to resume chemo again.  I mentioned the possibility of surgery.  He didn't think it was needed but said that he is going to talk with the doctors at UIC to see what they had to say.  I asked if there was a biopsy done during the ERCP procedure.  He said no that there was no need considering Bill's history.(So there is a chance it's not cancerous)  He also mentioned about trying to find a trial study for Bill but we might have to travel for it.  He didn't seem as optimistic as the doctor at UIC, but he wasn't depressing either.  Bill is going back next week to see him.  Hopefully by then all the doctors will have spoken to each other and we will know what's going on.  

The roller coaster continues..... It's been the longest ride of my life.  


  1. i am officially casting MY vote (tho i have not been asked to stick my nose in your business) for the medical staff at UIC!


  3. We totally agree. Too many mistakes have been made.

  4. my 2 cents on the gallbladder. By the time mine was taken out, it was like sand- the surgeon said I had had many attacks. The big one that send me to the ER where they finally said it was my gallbladder- I had just eaten a piece of pizza=- within 20 mins I was in a heck of a lot of pain. The fat from the cheese on the pizza is what did me in. The pain, well, it was like a huge fart that I could not pass.
    Hopefully that helps - stay with bland foods, broth, crackers, that kind of fun stuff.

  5. Smart doctor to want a powow with the other doc's. Let them all be on the same page. Whatever happens surgically the consensus is to re-start chemo. I trust they will come up with a plan in the meantime. In my thoughts and prayers, Love, Barbara

  6. Sally,
    I totally know what you mean about it being a roller coaster ride for both you and Bill. I'm very very sorry you're still having to ride it.
    It is really hard to see someone you love in pain and not have any clear answers on how to make it stop. We spent the last year in a constant battle with Steve's cancer. Currently he is doing better than I am. I'm still trying to recover from all the stress of the last year. I'm praying for both of you and hope they get him help and answers SOON!!!!