need help for my dad (Page 1 of 4)

Hi Lovedad,

I just wanted to welcome you to this site as well. I am sorry to hear about your Dad. Once he has seen the GI doctor and has an Oncologist, I think things will feel more in control. They will decide the best options for your Dad. I understand how you are feeling right now. My daughter, Lauren has CC. Your world stops and you feel so lost. But, you are not alone. We are here to help you whenever you need us. Please come back and tell us about your Dad and the doctor visit. Take care.
Love and hugs,
-Pam

I agree with the others that you should wait to be referred to the oncologist (and perhaps other specialists in their group) to find out what ideas they have for your Dads treatment. My thoughts are with you. I know how much shock and fright you are feeling. I am struggling with the same emotions (including occasional panic). Like those who have been dealing with this longer, they say that once a plan is in place your "fright turns to fight". This even applies when the treatments are not curative. Best to you, and do enjoy your little ones! They need you too.
Willow

Dear lovedad
Your story sounds very familiar, as my husband also had jaundice after diagnosis and they were able to put only one stent in and were not successful with the second. In his situation - once he started chemo - chemo actually took care of jaundice problem, which what doctors were hoping for. Don't be alarmed that he stays yellow for a while. Do ask for copies of his tests and see how his bilirubin changes. If it is dropping each time - he is on the right track.
Hope it gets better!
Sincerely, Alla

Thanks Lainy. I'll ask the gastro doc to recommend a oncologist anyway. Complex disease like this has to have a central point of contact. ... Do I need 2nd opinion for the oncologist? Sometimes, I am not sure what to trust or believe of doctors.

We came back from the surgeon today. He said CT we had before didn't have the injection (family doc ordered CT said kidney function number not so good so didn't have the injection) so it's not clear enough to be sure. His nurse said, we have to have CT with injection to show details.

Last Fri's blood work showed bilirubin was 30, worse then before the stent was inserted, 15!! I was so frustrated. I asked why, he didn't really explain why the stent didn't work. Anyway... he said since bilirubin is high, we need to redo CT with injection (become a have to now), he thinks the best is my dad goes to hospital staying a few days. They'll take care of the CT scan, jaundice together. said it's easier for my dad, and faster to get the result. I am not sure if it's any faster, but maybe it's easier for my dad.

Now i really need some advise.... we back to step 1 need to redo CT, and redo taking care of the jaundice. I am so frustrated. After all, we back to step 1.

The doc said since stent failed, they'll drain the bile from the back, like a bag on the body, drain the bile out. The scary part is, he may or may not need this kind of drainage, drain it outside the body, from now on. Does this sound normal? Why the stent is so easy to fail working or never worked at all? Does it mean the doc put the stent in has less experience? Draining the bile outside of the body is it a common or safe way? I am thinking from the skin, through many many layers inside.... go all the way to the bile duct... how can the tube or stent, whatever they use to drain the bile can stay where it is while going through the open skin? how to manage no infection? We are talking about from outside through human inside near the liver always have an open skin while a tube or stent is there.... I am kind of afraid of it, but I know if bilirubin is too high, it's life threatening. We can't wait on this.

Surgeon doc said, we need to have the CT first, and then drain the bile, then we can have the oncologist. He said if it's needed, hospital will send one oncologist during this hospital visit.

I am not 100% sure if I am heading the right direction. All of the sudden seems dad's case getting serious then before. I am so worried.

Surgeon doctor: Dr. William Diehl. It'll be in Morristown Memorial Hospital.

I'll ask for oncologist tomorrow from my gastro doc. and will make sure radiologist do the external drain.

I don't feel very wrong, but I don't feel everything goes very right either... I am feeling crazy too. I don't know why they did not recommend oncologist at the first place.... but I will make sure find one asap. Thanks a lot!!

vedad....there is so much information coming your way that easily it can become overwhelming.  I feel for you.
Know that the bilirubin has to come down in order for your Dad to be treated with chemotherapy because; if the liver can't rid itself of the bile then chemotherapy would accumulate and cause great harm to your Dad.  Therefore, I would not worry too much (at this point) about the consultation with an oncologist, but rather focus on the successful drainage. 
Depending on the location of the tumor, stenting can become difficult or even impossible. In these instances an external drain is the next best option.  It has been tolerated by many others and provides for a great alternative for internal stenting.   
A CT with contrast allows for improved visibility of internal bodily structures and therefore aids the physician in determining the true extent of the disease.
I agree with Lainy in that you might want to take a deep breath and take it one day at a time.  Once adequate drainage has been achieved, your Dad will feel much better and the next step will evolve. 
Stay strong and know that we are here for you.
Hugs,
Marion

2nd day in the hospital. 1st day CT, 2nd day nothing. Surgeon doctor did not show up, but the gastro doc stopped by. He said he talked to the surgeon doctor, and surgeon doc said cannot operate. Another heart broken news. I am frustrated why from the beginning till now, there is nothing, zero thing looks encouraging or less worse.

I asked for the oncologist. Gastro doc said tomorrow will have oncologist in hospital talk to us, family meeting kind of consultation. I hope that'll happen soon.

I ask for referral us to Sloan NYC, but he said if this surgeon said no, others will say no. He doesn't think it's worthy for taking my dad to NYC for 2nd opinion. Maybe doctors all see his new CT and situation showed really bad so he thinks not worthy to try 2nd opinion? But I won't and I can't stop trying.

I agree. Take a deep breath and wait. You still dont have the full inderstanding of why they may not be able to safely do surgery and your Dad still has not gotten his treatment plan (at the current hospital) in place yet. It can take many days, often weeks to meet with each specialist and have all the tests done. Wait until you have talked to the oncologist.  Sometimes chemotherapy cam be a safer alternative rather than surgery (that was the case with my sister) is what will be recommended. Sometimes they recomend radiation. Unfortunately, most cases of advanced CC cannot be safely and successfully surgically treated right away and there are many other types of treatments they may recommend.
Also, if eventually you decide to get another opinion, the hospital can fax your Dads records (all test results and CT scans etc,) to the new Dr/hospital  his evaluation instead of physically taking your Dad there.
Take Care, Willow