need help for my dad
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love dad, I would wait to see what ONC says and why. Then if you want to it is still your right to get a second opinion. Ask questions until you feel you fully understand.
You might want to write some questions down so you don’t forget!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!!
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,
MarionOK, I just researched the Hospital and Dr. Diehl and both have good reviews. In fact he is highly rated. So, try to relax a bit. If you keep on being that upset it doesn’t help the situation and you may want to ask your Doc for something to just take the edge off for you. You will wear down in no time at all. Be strong!
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!!
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.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.
Dear love dad, Start with the one ONC but remember it is your right to get another opinion IF you want. You may just connect at first visit and that is good. Listen to your gut feeling, it is usually right. You really need an ONC to take control of things like LABS, Tests etc. Like having everything under one umbrella. Be strong.
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.
Lovedad,
Welcome to our family. You are so wise to be doing research and asking questions on this site. There is so much experience right here and everyone is so helpful. Sending prayers for your Dad and your family.
LisaDear 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!
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!
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, AllaYes, 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.
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