Confused??
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Cinnamin
RUN!!!- Get a block of his tissue and 8 slides, a copy of his initial visit and his latest visit notes. If the notes don’t include lab values get them too, you’ll need a copy of all films put on a CD. Then you get on line and figure our where you want to go to get a second opinion. Just about any insurance, even medicare, allows a second opinion on cancer care. There are oncologists these days that specialize in oncology in the elderly patient (a geriatric oncologist). His age is not the issue. Hi performance status and his co-morbid diseases (if any) are. So, as many have posted if he is an active man ,with no other liver, kidney or heart disease he has the options most of us have. I’d also like to stress that options also inclued medications that are not even chemo therapy at this point like Avastin. And there are also oral chemo therapies so he doesn’t need to go in for treatment as often he can take pills at home.
In the end it is your DAD who should have the final say and he can only do that when he is making a fully informed decision. Pack him up and go…..keep us posted!
You are doing a good job daughter.
Beth OCinnamin,
Dr. Lenz is my mom’s oncologist and he is really one of the best in the field. Please google him and you will see. My mom had a tumor in her bile duct, not in the liver (which is great!) and Dr. Selby (USC) operated and got it out, but you never know. At this point she has enlarged lymph nodes, cannot do radiation but is on an aggressive chemo treatment plan and has regular CT Scans every 6 weeks. She is 74 years old and that does not matter to Dr. Lenz. Please call his office for a second opinion at least, you will not be sorry. Taline is his assistant and she is EXCELLENT. I feel secure that no matter what happens to my mom, and it probably will, we had the best care possible.
Good luck and God Bless!
Hi Cinnamin,
Welcome to the site, although I am sorry that you have to be here. I hope you will keep coming back as you will get loads of support and help from everyone here.
I agree with what the others have said about age not being a factor in treatment options and also about getting second opinions. My dads cc was deemed inoperable from the start and he also had the metal stent inserted.
Good luck with the onc app tomorrow and my best wishes to you and your family.
Gavin
Yes, this is a klatskin tumor. Biopsy was done during an ERCP, and malignancy confirmed. It appears that it is NOT in the liver, just at the juncture of both bile ducts and the small intestines. No other organs involved at this point. The tumor itself is about an inch in size. The Dr. was very suprised when we said we wanted to pursue either surgery or some sort of treatment. He had called us in to discuss the possibility of metal stents.
My Dad’s bloodwork came back with his liver function off (he’s still jaundiced) and the marker of 122. All other bloodwork came back perfect.
Still waiting for an appointment to oncology….Thank you all again for all of the information. Seems this is the only place I’m getting answers!
Cin….is your Dad able to travel to USC? You might want to make an appointment with Dr. Lenz. (Oncologist) Dr. Lenz will be able to refer you to a surgeon familiar with this type of cancer and a radiologist. Let me know if you need some help with this if it is something your Dad can tolerate.
Best wishes,
MarionHi Cin
Regarding the CA 19 tumor marker and also the CEA tumor marker both can be misleading and are just a tool one piece of the puzzle in determinining diagnosis. Both of my tumor markers are well within normal range, and have been. My prayers and thoughts are with you,your father and family.
Hi Cin,
Welcome to the site and very sorry to read about your dad. The cancer number you are talking about is probably the CA 19-9 tumor marker. Usually over 100 means malignancy. However, it has been reported on this site into the thousands and then there are people who have reported it under 100 and still malignancy. Bottom line it is just one tool used with other factors ( visible tumor, FISH staining, cytology, etc) to come up with the final diagnoson of CC. Also PSC patients can have higher CA 19-9 simply due to infection.
I’m sure more members will pipe in on your question. Additionally by the position of his tumor it sounds like it is a Klatskin tumor?
AshleyThanks so much for all of the great replies. We are in San Diego.
Good news…..all of our pushing netted us an Oncology appointment for tomorrow. We were also told his cancer number is 122???? Where can I find what that means!
Thanks again
Cin…I agree with all of the above. My husband is 77 and being treated aggressively. Like they said, get another opinion ASAP. This doctor has not told you anything or done anything. It is up to your father to make his decisions and it sounds like he wants to fight. Have you not seen an Oncologist yet? The answers this doctor gives you just shows that he is not that familiar with CC> Please get the records ASAP and find another doctor. Perhaps if we knew where your dad lives we could be more helpful.
Cinnamon, Unfortuanately if the doctor you are dealing with is not specifically well informed on CC, run, don’t walk to another doctor. There is always hope! Age does not matter. Your father is entitled to copies of all his records and you should keep a set with you and forward a set to your second, and third opinion doctors. They will also give you copies of CT scans, xrays, and pet scans on a disk or copies of originals.
My mom is 74 and is actively being treated. She has extrahepatic bile duct cancer and had a whipple surgery this past March to remove it. They believed they got it all. Her lymph nodes have enlarged and she has no cancer markers, but that can be misleading. There has been no spread to other organs.
After her whipple surgery in March she began chemo treatments at USC in Los Angeles. She is on a thrice daily Xeloda pill for two weeks on and one week off. She also goes in for weekly gemzar chemo treatments- two weeks on and one week off. She also has a cat scan every six weeks to monitor any activity. She has had lymph node shrinkage and also some have grown slightly. For now, she is doing great and we are very grateful for the aggressive treatments of her doctors. They are going to keep her on this chemo plan until it loses its’ effectiveness, but her oncologist has a backup plan. My point is that she is 74 years old and is being treated very aggresively. Please fight for your dad. The insurance originally wanted her to be treated at one of our local hospitals which is a good hospital, but they are not specialists. I had to argue that she needed specialist care and she got it. Just put on your armour and go…
Cinnamon….I agree with Patty. Whatever decisions to be made they need to be informed decisions. You need to be very aggressive and contact other physicians. Make sure to have all records including, blood tests, etc. Passing on the information is not good enough. I would take matters in my own hands and make the necessary phone calls.
Good luck and best wishes,
MarionCinnamin,
Welcome, you are among friends. If your father is otherwise healthy I see no reason for his age to be a factor in treatment decisions. Your father should be the one deciding what he wants to do. Where is he being treated? If he wants to fight this I think you need to get a second opinion ASAP.
Patty
Hi Everyone,
I’m so confused right now! Since my 78 year old Dad was diagnosed and the stints were put in, NOTHING has happened! We keep trying to get into more and other Drs, but so far no good. We had a post stint checkup, and the Dr there seemed to think we were done doing anything. His thoughts were that since my Dad was doing great and the jaundice symptoms are receding, we should do nothing. My comment was that it absolutely contrary to everything we know about cancer. Why aren’t we attacking and treating it?? He said he was passing along our information to the oncologists and a Dr who specializes in cc, but so far nothing.
Is this normal? We’ve been told that it is probably inoperable due to the positioning of the tumor. It is right where the left and right bile ducts meet the small intestines. Is this because of his age? His age was brought up frequently. I asked his Dr directly about how long my Dad can go on like this. He said “Well, he’s not going to live for 40 more years”. I floored him by asking why not
But then I asked if 20 years was reasonable. He stumbled a bit there, and said we needed to discuss it with the oncologists.They did a bunch of bloodwork and said they would get us details on the tumor markers. Really, My Dad looks so much better now that’s he’s not a day-glow orange, but is it normal to just wait it out??
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