lovedad09
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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.
Lainy — Thanks a lot for the research! While so much going on, my 3 yr old had fever for 2 days…. I feel very overwhelming.
marions — Thanks for the details. Dr. Diehl didn’t explain much at all. less then 5 talking he stepped out. His assistant helped explaining things…
I’ll see how today goes and keep you all posted. I got so much help here. Thanks a lot!!
Lainy wrote:OK, first of all you can get an Oncologist any time you want! Next, I have never heard of draining bile from the back, did you mean the side? My husband had an external drain with a bag but it was on the right side. IF this is done insist on a radiologist doing the drain! Has this Doc ever done this stuff before? Now remember I am not a Doctor but here is what I would do. When something feels wrong it usually is. I would find an Oncologist tomorrow and explain it is an emergency and perhaps he can get you in if not tomorrow in a day. A couple of days may not matter and if Dad gets more sick you take him to ER.
What Hospitals are close to you and do you know of anyone else who can recommend an ONC. What is this Doctors name and have you Googled him for reviews. What the Doc should have said to you was to give you the name of an ONC to call.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!!
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.
Lainy wrote:Dear LoveDAD, YES, everyone has a main Oncologist. That Oncologist can confer with other ONCs but he will be the one to order chemo/treatments or for surgery he will recommend an Oncology Surgeon. He will also be the one that will order LABS and then see your Dad periodically. My husband did not have chemo but the yellow took weeks to leave. I would think your next step is to get an Oncologist. All of Dad’s Doctors will become his team. Be Strong!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.
tryingtohelp —-Thank you very much for the info! It’s been 1.5 weeks my dad had the stent put in and still looks pretty much the same, yellow.
How long did the yellow gone away for your husband? or it didn’t go away until the chemo started?We had the blood test last Fri. Gastro dr will call and see if the bilirubin will go down or now. He said should be. The dr didn’t attempt to put the 2nd stent at all. He said 1st difficult, 2nd stent is temporary solution. I think when he took the biopsy, he kind of thinking the tumor is cancerous.
I’ll see what the surgeon say tomorrow. Also planning to call Dr. Fong’s nurse again for the reports that I have.
Is there a doctor for cc patient that can help selecting different treatments, evaluate pros/cons, side effects? Like a doctor in charges of the whole case for each patient? I feel so many things I need to do, but sure what to do first.
Thanks a lot!
Yes, it’s great that my family and my parents are all here. I really enjoy everyday can see them. Hoping it’ll last as long as possible.
My dad has jaundice for about 3 weeks before we got to the gastro doctor. I was in a big hurry to have doc schedule the ERCP to insert the stent. The gastro doc was recommended by dad’s family doc, said top NJ doctor. But he didn’t do my dad’s ercp since we were in a hurry. It’s one of his partners in the office. I kind of thinking if they have much experience. They said they have done a lot of ERCP and the stents. At that time, I don’t see having much choices either. He’s yellow, need to be taken care asap.
I trust doctors but also need to look out for my dad too. He’s old and weak. All decisions need to be made very carefully. Thanks for the reminder. I’ll pay more attention.
It’s too shock for me that I need a lot of support so that I can support my dad. Thanks everyone! Really appreciate it!!
We went to the gastro doctor yesterday. He told me the position of the tumor is kind of going along in the bile duct on both side the Y, and a main one on the junction…. it’s not a good spot doctor said. I also saw this per my research and also not very good either.
But anyway, doctor referral us to see a surgeon doctor and got a Monday app. It’s Dr. Diehl. My gastro doctor said Dr. Diehl is the best doctor. Dr. Diehl said it’s mainly depending on where the tumor is and how it grows. Age is not the biggest concern. I am hoping my dad has a chance and can be operated. Praying again.
Gastro doctor said see the surgeon dr first. If he cannot do it, then oncologist. This Gastro doctor always try to help me by my will. A very nice doctor but it’s may or may not be good since I am not a doctor. He should know more about the priority then I do. But maybe it’s not big deal for our situation. It may not be any difference in a few days.
My dad has blood test again since he still seems yellow. Doctor put only 1 stent on 1 side even blockage on both side. Said hard to place 2 stents…
We have not told my dad how serious it is yet. I am so sorry that I can’t tell him but I would be more sorry if I have told him. He’s a very sensitive person and I think he’ll be much worse off if I told him right now. I’ll wait and see what Dr. Diehl says first. Will keep you all posted after the app.
My mom and dad both live in my place right now. I didn’t tell my mom the full story either. The better part is my dad can relax at home and see his 2 grand kids and all of us everyday. I am praying the happy days can be longer. Everyday is a gift. I hope he can fully enjoy the family time.
Thanks again everyone!
