second opinion for klatskin tumor

7 Posts | Page(s): 1 

second opinion for klatskin tumor

by hope1028 on Fri Sep 15, 2017 07:05 PM

Quote | Reply

Hello everyone,

I  am grateful to have found this site as we are feeling quite lost and confused right now.

My father (76) was diagnosed with bile duct cancer and they determined the tumor was currenly inoperable due to its location (btwn the rt and left duct). He has a stent rt now that is currently blocked and an infection on the left side which now has a drain.

We are currently at Memorial Sloan Kettering in NYC which we heard had some of the best doctors and surgeons for this particular type of cancer (which apparently is extremely rare).

He's been hospitalized so far 2 times due to infection and both times was placed in ER first to wait in hallway filled with people until a room was available- sometimes this could take 8-10 hours to get him in a room.

It seems overcrowded and that we are often waiting for long periods of time without answers. The intervention medical surgeon almost intubated him for a surgery while his breathing was compromised due to a miscommunication with the other dr.

I am wondering if this is a sign for us to seek a second opinion and am interested in hearing if this is sadly the type of care that is out there due to the abundance of people who need treatment.

Are there any facilities that you would strongly recommend that deal specifically with bile duct cancer?

Sending best wishes to you and your loved ones. And thank you in advance for any input you can provide!

RE: second opinion for klatskin tumor

by sharonlee7891 on Sun Nov 26, 2017 01:56 AM

Quote | Reply

We are actually at Hopkins and are planning to go to Sloan for a second opinion. The medical and radiation oncologists have been wonderful here, but we want to be sure that we've seen all out options (so far, we have only chemo in hopes of extending life - not a great option).

The radiation onco before our current one moved to Mayo Clinic. That is very far, but if you can manage, I heard that one was good...

RE: second opinion for klatskin tumor

by overtime on Sun Nov 26, 2017 04:50 AM

Quote | Reply

Hope

I want to extend my sorrow for the diagnosis of your dad. I cannot offer anything about the best medical facilities as I am in Canada. I wasn't surprised to hear about the long waits or especially the patients put in the hallways while waiting for a room. Miscommunication is also an issue and for that reason, you will always have to question, question and question some more. You have to be your father's advocate, especially if he is on a lot of drugs that make him drowsy and confused. Question the medication they give him, what it is used for, etc. Also question procedures, therapies or treatments. There is so much to learn about cancer. 

It is O.K. to feel confused and lost at this time. You will be going through a lot. A  second opinion is alright as well, remember this is your dad and you want the best for him. Get lots of support from friends and family, and accept any type of help from them, you will need it.  

Hope all goes well. Keep writing as it is a good medicine.

Overtime

RE: second opinion for klatskin tumor

by hope1028 on Tue Nov 28, 2017 09:31 PM

Quote | Reply

Thank you so much for your response and wise words.

I really appreciate it and will take them to heart.

Since I wrote last, I have been  more satisified with his care and hopeful that we are moving in a better direction.

Best wishes to you and your family.

RE: second opinion for klatskin tumor

by hope1028 on Tue Nov 28, 2017 09:35 PM

Quote | Reply

Thank you for responding- I've been a lot more satisfied with the care he is getting lately. I'm starting to see that since this particular type of cancer is so rare, a lot of what we are experiencing is trial and error. I think that will probably be the case no matter where we go. Additionally, I don't think my dad is in a position that he wants to uproot and move somewhere for his care- but I have also heard good things about Mayo clinic so we will keep that in mind.

We found that Sloan also has a location closer to my parents house which is definitely easing some of his troubles. He starts radiation and chemo pills in a couple of weeks so hoping and praying that things begin to turn around in a positive direction.

Wishing you and your family all the best.

RE: second opinion for klatskin tumor

by MaggiesMom10 on Tue Nov 28, 2017 10:47 PM

Quote | Reply

On Sep 15, 2017 7:05 PM hope1028 wrote:

Hello everyone,

I  am grateful to have found this site as we are feeling quite lost and confused right now.

My father (76) was diagnosed with bile duct cancer and they determined the tumor was currenly inoperable due to its location (btwn the rt and left duct). He has a stent rt now that is currently blocked and an infection on the left side which now has a drain.

We are currently at Memorial Sloan Kettering in NYC which we heard had some of the best doctors and surgeons for this particular type of cancer (which apparently is extremely rare).

He's been hospitalized so far 2 times due to infection and both times was placed in ER first to wait in hallway filled with people until a room was available- sometimes this could take 8-10 hours to get him in a room.

It seems overcrowded and that we are often waiting for long periods of time without answers. The intervention medical surgeon almost intubated him for a surgery while his breathing was compromised due to a miscommunication with the other dr.

I am wondering if this is a sign for us to seek a second opinion and am interested in hearing if this is sadly the type of care that is out there due to the abundance of people who need treatment.

Are there any facilities that you would strongly recommend that deal specifically with bile duct cancer?

Sending best wishes to you and your loved ones. And thank you in advance for any input you can provide!

Hi hope1028, I’m glad that you found care that you are happy and comfortable with fog your father. I have a friend that has been going through the treatments for that. She has a wonderful team of doctors at Vanderbilt and she is doing well now. If for any reason you decide you would like the names of her doctors, please let me know. Prayers for your dad and your family. Bren

RE: second opinion for klatskin tumor

by shanie1017 on Thu Dec 07, 2017 09:33 AM

Quote | Reply

Hi.  My dad (74) was diagnosed with bile duct cancer in October 2016.  He's been treated at UCLA.  Although this type of cancer is rare, I think the doctors at UCLA have been doing their best.  He sees an oncologist and gets his biliary drains exchanged every two months (sometimes, every few weeks) by the inteventional radiology department.  Also, bile duct cancer is volatile with many ups and downs, so he's been in and out of the ER since he was diagnosed.  I think I've had to take him to the ER basically every other month in the past year, mostly due to complications from the biliary drains (i.e. infection, sepsis) and also from all the side effects caused by the chemo.  In general, the ER hasn't been too crowded or crazy, except for a few times when we went on a Friday night or right before a holiday.  We've never had to wait in the hallway or wait 8-10 to get into a room.  It can be frustrating to explain everything to the ER staff and repeat yourself over and over again, but bile duct cancer is a rare type of cancer, so I don't always expect them to know much about it.  The thing that frustrates me the most is that the chemo has dried out his veins, so whenever he goes to the ER, it's always an ordeal when the nurses want to draw blood or put him on IV.  They can't find his veins, so they end up poking him repeatedly, which is very painful on a cancer patient who is already in so much pain.

This particular cancer is very difficult to deal with because you're fighting a battle on two fronts.  You're dealing with the cancer itself and also all the mechanical problems caused by the fact that you have tubes in your body (and that in and of itself can lead to all kinds of pain, discomfort, infections, etc.)  Because frequent visits to the ER and the hospital are normal for this disease, I think it's very important to stick to the same hospital for all visits once you've decided on a hospital or medical team.  

7 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.