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Dear Donna: I am so sorry to hear about your mother. My husband was diagnosed with Stage IVcc as well. He was told told that his form of cc was inoperable by a highly reputable hospital in Los Angeles, California. However, I would not take no for an answer. I did my research very thoroughly and literally googled operations and surgeries on his specific type of tumor. I found a physician who had performed surgery successfully many times on his tumor and contacted him. He agreed to look at my husbands case and determined that he could in fact take the case. But even better, he was able to refer me to a surgeon locally in Los Angeles at USC that was able to perform the surgery. Long story short, my husband had liver resection surgery that extended his life.
Again, long story short – You may want to consider second and third opinions even if you are at a highly reputable institution. Its just a suggestion, but do your research and don’t give up. You never know what information you may determine.
Mike I agree with many others who have written. Its very important to get a second opinion and to seek an institution that knows Cholangiocarcinoma. My husband who has the disease was also told he was inoperable and ended up that in fact he was. It really depends on the specialist and institution that makes the difference. He was and is being treated at USC.
michaellax wrote:Thank you to everyone who replied to my post. I appreciate the tips and advice.mike
We alsolive in the Inland Empire. My husband has Cholangiocarcinoma. We were told there were no specialists in this area to handle this cancer. We were referred to Dr. Rick Selby at USC but there are also others as many people have mentioned. The best to you and your family.
sdlinriverside wrote:My mom has finally been diagnosed with CC. She presented with sever jaundice about nine months ago. Now from what I have read this disease is very aggressive and the doctors told me that there has been no change in the one spot they found. Size is the same and it has not spread. This does not make any since to me. She has a very good primary dr and he agrees with me. Nothing adds up.
She had a biopsy done so we are pretty sure this is what she has. I still have to discuss with her primary doctor as to what the next step is. We know that surgery is not an option for her due to her medical history(3 strokes & needs triple bypass surgery) Is there anything I should be asking the doctor ? Any help would be greatly appreciatedBob and Nancy – Words can not express the loss you and your family must be feeling for Jeff. You are all in my prayers today. Nancy, I believe your husband shared with you that Mark and I had the wonderful opportunity to meet Jeff and your husband during a routine visit to USC. I can’t even begin to tell you how that was one of the most amazing moments of my life. Jeff had the most beautiful smile and was so cheerful. His spirit touched me and I will never forget that feeling. We were certainly blessed to spend a few moments with him. He will hold a special place in my heart especially as a mother of an autistic son.
Many Blessings, Jeannemarie Parsons
Marion – I am just reading your post on Patient Advocacy. Very interesting as this is something that I am very interested in getting involved in as well, whether in a political manner or privately. But ever since my husband was diagnosed with cc, I have certainly had the opportunity to be even more of an active patient advocate. If there is any insight or direction you can provide to further me in this direction, that would be great. I would be very interested in serving on a committee as I feel this is a very important cause.
Dr. Selby decided to do the liver resection in two stages. The first surgery was a center resection. And after some recovery time, he will resect the far left section which also has a tumor. That will take place in about 3 weeks. On the recovery note – Mark has been doing great. He is recovering slow and well. Everyone has been so wonderful. Thank you for your thoughts and prayers. You have all been so supportive and wonderful. We will keep you posted.
Dear All: So that appears to be the big question and the one my husband faces next after resection. To chemo and radiate or not to chemo and/or radiate? Should we just go with the recommendation of our Oncologist. This seems to be a confusing one. Also how sick does the therapies seem to make the patient? I had Stage I/II breast cancer and had chemotherapy and had no problem at all with being ill. Same with radiation. Just was wondering what life is like during therapies for CC patients should my husband decide to opt for therapy. Hmmm – so much to think about and research.
Thank you Lainy and thank you for your wisdom of getting the second opinion. I have a bit of a background in the medical field (very small) and when we went to UCLA, I believe they were very much interested in candidates for their clinical trials. Well, my background is sort of working in clinical trial studies so I felt like my husband was only being considered from that aspect. Thus if he wasn’t going to fit in the trial guidelines, they were not going to consider him at all or see him as a real individual. I believe UCLA is an excellent health organization, just wasn’t the answer we wanted.
Dear All – Well it has been a whirlwind holiday around our place. You would not believe it. First of all, I have to thank Patti for writing her story about Dr. Wallis Marsh. Because of her, I was able to email Dr. Marsh requesting him to review my husband’s case. To which he replied, “Yes”, and so much has changed since then. We were originally told by UCLA that Mark had PSC and he was inoperable. Further, that with palliative care, he had about 3-15 months to live. Well, after much research on my part and getting in touch with Dr. Marsh, he generously reviewed Mark’s case and determined that he thought he was able to have a resection. He contacted a colleague of his in LA at USC, Dr. Rick Selby and literally 3 weeks later, my husband had a 12 hour resection surgery just 2 weeks ago. This was possible because Dr. Selby determined, among other things, (after really reviewing the PETscans) that Mark did not have PSC which we were led to believe. Anyway, he is doing well and in a few weeks, he will be going in for his final portion of his resection surgery – Dr. Selby will be doing that surgery as well. Thanks to Dr. Wallis Marsh and our amazing surgeon Dr. Rick Selby at USC, Mark has been given extended life and we feel so blessed. We know he is not out of the woods yet, there will be therapies following the surgeries, but we feel it is worth it. Thank you Patti for sharing your story about Dr. Marsh – he is truly an amazing man.
What have I learned from this experience? Like many of you taught me? Don’t give up hope. Yes you can be realistic but educate yourself and do the research. Don’t take no for an answer the first time. My husband had no idea I contacted Dr. Marsh in the first place – he probably would have told me I was crazy to do so. He believed and trusted in our first opinion (i.e. UCLA) and he was ready to accept their recommendation of palliative care therapy. I wasn’t and now he is thankful I wasn’t. But for whatever reason, consider seeking other options if possible. There can be hope.
