September 10, 2006 at 9:33 pm #14599lynneParticipant
I remember my shock on receiving my diagnosis, now almost four months ago; initially the doctors thought it was bile duct cancer, because during sugery to relieve a blockage in my bile duct, they could “feel” the cancer. However, pathology results indicated that it originated in my gallbladder (also a rare and aggressive cancer) and, because of the surgery, they couldn’t start treatment right away. Then, when I recovered from the surgery, my tumor markers were down and the CT scan didn’t indicate spread, so they told me to return for more tests in two months.
So, I still haven’t received any chemo, and I continue to feel good. Initially, I was told “2 to 6 months,” which was shocking, and at nearly 4, I’m feeling too good to think they were anywhere near the mark. I say all of this because, in my reading, on this site and a few other disussion boards for these two rare cancers, I have learned that the doctors don’t know everything, especially how the disease will progress for any one person, that each person responds uniquely to treatment, and that while there is information to learn, it must all be taken with a grain of salt. This site and a few others have led me to valuable sources of information and places where others are sharing their stories.
Gather information, and maintain your hope for the future. My best to each of you in your family as you begin this journey.September 7, 2006 at 7:43 pm #14598saraMember
Irene – Stacie posted some very good information. I really hope that your husband will seek second and third opinions before taking the next step. This cancer is very rare, which means that there is not a large number of cases to warrant extensive research. Therefore, you’ll find that there isn’t really a prescribed course of treatment. Check out the blogs on here – the posters are taking different chemos, in different orders. What is extremely important is the decision on the first chemo. (should you elect to go that direction) The tumor cells are still virgin to chemotherapy, so you want to make sure you hit them with the most effective cocktail – and that decision requires an expert oncologist in cholangio.
I highly encourage y’all to speak with the experts at the major cancer centers. Sloane Kettering, MD Anderson, Mayo, etc – they are filled with the “top” oncologists and surgeons from all over the world. They deal with many cases of cholangio and they are better positioned to offer more options to your husband. As Stacie indicated, these doctors are on the forefront of research, and are privy to much more information than your husband’s current doctor. At a minimum, you must talk to an oncologist. Chemotherapy can be a great tool – not just for extending your husband’s life, but also managing the pain.
If you do elect to receive more opinions, and since you may have your first visit with an oncologist at one of these hospitals, start the necessary paperwork at the cancer centers immediately. At least at MD Anderson, you’ll discover there is a fair amount of red tape to wade through just to see a doctor. Mayo is much faster, but still requires work. I don’t have personal experience at Sloane Kettering, but I bet several others here could tell you.
My best to you, your husband, and your family. I wish you didn’t have to visit this site. I wish none of us did. (but many thanks to team Clements for getting it up and running)September 7, 2006 at 7:01 pm #14597marionsModerator
the cell brushings many times are inconclusive or negative as it was in our case. The liver biopsy will be much more accurate.
We are thinking of you.
MarionSeptember 7, 2006 at 4:14 pm #14596stacieMember
Just know that you are not alone. Cry your eyes out, take a minute, cry them out again, then dab them dry. Gather your family and friends together and go to work. You will have a lot of ground to cover and it will help to split up the work.
There are a few things you need to know before you start. You’ll need a CT and PET scan to know exactly what you are looking at – that means, has the cancer metastacized and to where, do the oncologists in your area have any experience with cholangio, and most importantly – what does your husband what to do.
As painful as this is for you and your family – I’m not sure the caregivers can really understand the emotions that the patient is having. Mark (my brother) seemed stunned and almost immobile – while he worked that through, we gathered information as quickly as we could. We wanted to make every path available and then let him choose the path most comfortable for him.
You must seek other opinions and several of them. Any oncologist that tells you there are no options and no hope with cholangiocarcinoma is out of touch with the latest research. Is there a cure if it has metastacized? No, modern medicine can not offer that to us at this point, but it can offer time – this ofcourse is not to say that naturopathic options that heal aren’t out there as well.
I hesitate to say this, but I personally feel that it is risky to use an oncologist who is very conservative (this means that they will only try things that have been specifically tested on this specific kind of cancer and have shown good results) I would agree with this approach if there was any kind of substantial research being done on cholangiocarcinoma, but unfortunately there isn’t and we must rely heavily on the data from other hepatobiliary cancers at this point – this is an aggressive cancer and we will never touch it with oncologists who aren’t willing to stretch just a bit and find out what works. There are many out there willing to do this, but there are many who won’t even touch it.
If your husband wants to fight this cancer then he needs to make it clear to the oncologists that you visit, that he wants to fight in an aggressive manner. If he doesn’t or he wants to take a natural path – I also think there are some very good options out there as well.
You have a lot of big things ahead of you, but just know that we are all here to help ease of the burden. Ask anything you need and read everything you can get your hands on – be sure to let family and friends help, they don’t know what to do either and together you can find some direction.
Good luck and keep us updated.
StacieSeptember 7, 2006 at 11:35 am #14595txgalMember
I tried to email you. I hope you got it. I have some reccommendations for you. A doctor at Baylor is recruiting for a trial. H especialized iin gi tract cancer. Let me knowif you got the info…..if not i will post here if it is OK. I don’t think you can do that on the other boards. Good luck.September 7, 2006 at 1:33 am #14594marionsModerator
also find doctors who specialize in “bile duct surgery” in many instances they are also liver transplant surgeons. You need many more than one or two opinions and read this web site since each day we learn something new. We are all connected in a very special way.
The best of luck
MarionSeptember 6, 2006 at 10:13 pm #14593tfordMember
I would advise you to seek a second oppinion after all your husbands results are in. You can read about my F-N-Laws experiences in the introductions. We sent copies of all his scans and biopsy reports to MD Andersons and they got back to us promptly. They pretty much told us the same thing his onocologist did with the exception of don’t look at the statisics every body is different. His prognosis was 6months to a year and that was on 1/3/05 and he is still with us. Irene the chemo will not cure cholangiocarcinoma but it can slow it down. My F-N-law had a tube and stents placed in the bile duct to bypass the tumor to drain bile externally in a bag which worked out really well for him. After that he started a regimine of chemo consisting of Gemzar for approximately 6 months which did wonders with minor side effects. After that the drug of choice was Xeloda which also took his tumor markers down. Now he is taking Tarceva which is used for pancreatic cancer and we won’t know if this is working until his next scan on 9/11/06. If your husbands cancer is’nt metastised else where he could be a surgery candidate which that is the only long term survival statistic there is. My thoughts and prayers will be with you and your husband. If there is anymore info you would like just ask and i will reply.
TFORDSeptember 6, 2006 at 3:29 pm #225ireneMember
Last Friday my husband was diagnosed with bile duct cancer, cholangiocarcinoma. Today we are waiting on results of “cell brushings”. Anyone know what that will tell us? At this time we have not been referred to an Oncologist. The DR. said the tumor could not be removed based on the location. He said no chemo, no radiation. He was very blunt, maybe they all are. He said 6 mo. to 24 months. I said it sounds like a “death sentence” he replied, “Yes” My son found this web site so I am sure this has been asked before, but have any of you gone to the big cancer treatment centers like MD Anderson, Sloan Kettering or Mayo Clinic. Any advice would be so appreciated.
How do I stop crying to be a good caregiver. We have only just now found out and the shock and sorrow is off the charts. Many thanks for any help and advice. Thank you. Irene
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