My dad technically diagnosed CUP but doc says cholangiocarcinoma
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Kam, if you have any doubt at all, what so ever, we are big beiievers in 2nd, 3rd, 4th opinions. Go until you are completely satisfied. Please keep us posted.
Thank you, thank you all so much for the warm welcome. I have been reading around and there is so much information and inspiration on this blog! I am thinking second opinion on surgery; maybe we haven’t seen the right doc.
This site has given me reason to hope and to take everything one day at a time.
KamDear Kamnbelle
Bless you for caring so much for your dad and arming yourself with knowledge. That is the best way to fight and be an advocate for your dad. Look over our site and glean all the information you can. Come often, post, ask questions, vent, cry, and get up to continue the fight with us standing with you. Our hearts go out to you. In some way, we have all been involved with CC. Keep us posted.
Blessings, Susan
Dear Kamnbelle….a warm welcome from me also. I am happy that you have found us because, no one should have to be dealing with this cancer without support. That is why we are in this together. Although, rather infrequently occurring, cancer of unknown primary has seen some previous threads on this site. Here is a sampling:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=453
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5617
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6791
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=36116Others may also share some of their experiences with you.
All my best wishes are heading your way,
MarionDear Kamnbelle, welcome to our wonderful family but so sorry you had to join us. You are right, in that CC is some kind of roller coaster ride but know that your dad is at one of the best hospitals for treatment of CC. Looks like you have also done your homework as an informed advocate is the very best kind. Don’t rule out any treatments yet as we have seen miracles occur on this Board. We always try to stay realistically optimistic. Try not to worry about down the road but concentrate on the here and now. Please keep us posted on his progress you are here now and I am sure you will be getting a lot more welcomes.
Dear kamnbelle – Welcome to the CC web site. Here you will find so many answers to so many questions and — more importantly — support and friendship! I don’t know personally of anyone here with this unknown primary tumor diagnosis, but others will jump in and respond if they do. Your best bet for information on this site is to use the Search Engine at the top and type in such things as “cisplatin” “gemzar” “chemo treatments” etc. to find so many threads of information. This can all be overwhelming in the beginning so feel free to ask questions under any of the headings and someone will respond. I understand how terrified you are right now….this disease and the unknowns of it can be the most anxiety producing. We are all here to help you so know you are not alone. My thoughts are with you and your family. Be sure to take care of yourself as well. Best regards – Nancy
Hi, all. My 74-year old father definitely has cancer, they are having a difficult time determining what the tissue of origin is. His oncologist at MD Anderson used the following factors in diagnosing cholangiocarcinoma:
1. Pain in upper right quadrant and corresponding back pain;
2. retroperitoneal mass which biopsy showed adenocarcinoma likely from pancreas, biliary, stomach, colon, prostate, lungs
3. Stains showed CK20 neg and CK7 positive; plus tumor markers normal except for elevated CA19-9
4. Normal PSA – ruled out metastatic disease from previously diagnosed and treated prostate cancer (with radiation)
5. CT scan w/ contrast showed suspicious tissue and slight dilatation of duct in segment VII of liver
6. Mass which includes positive lymph nodes immediately adjacent to suspicious tissue mass; also positive para aortic, mesenteric lymph nodes
7. appears to be no growth into any other organs (i.e., pancreas, abd aorta, SMV)So, basically the doctor staged him as IV because there were positive lymph nodes that were not immediately adjacent to the suspected TOO (tissue of origin). Various MRI, PET scans, etc. show no mets to any other organs or brain or bones – just these lymph nodes. The oncologist will not refer us for a surgical consult b/c he said it’s so obvious that it is not resectable. As I understand it, the only chance at a “cure” is complete resection.
My dad has not lost weight, has a slightly reduced appetite; and the pain in his abdomen only started in December 2010. He has been taking pain meds for a month now and he has to take more and more to control the pain.
Dad will start cistiplatin and gemzar this week; one infusion every 14 days; then back to MDA in eight weeks to determine if the lymph nodes are responding.
I am terrified of what is coming down the road, both pain-wise and side effects of the chemo. Any body else out there with this crazy “cancer unknown primary tumor” diagnosis?
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