Discussion Board Forums Introductions! Feeling clueless…

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  • #46695
    marions
    Moderator

    I also would like to welcome you and add one more informative source re: second opinions.
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
    All my best wishes,
    Marion

    #46694
    chezwrightaol-com
    Participant

    Hello! I have recently found this board and there is tremendous support here. Where are you located? There are excellent facilities for treating this..Cleveland Clinic, MDAnderson, Johns Hopkins, Mayo Clinic. I agree with the others in saying to seek a second opinion with someone very knowledgeable. I was told by the first gastroenterologist I saw that he could do “palliative care.” I was horrified! In no way was I going to just curl up and die! I went to Johns Hopkins, having been referred to a liver transplant specialist. He actually had not much experience with Klatskin tumor although knew his way around the liver and was expert in liver transplant. I finally got to someone who was an expert in cancer of the bile duct as well as a superb surgeon and things began to look up for me. It takes some time to wade through all the information and it’s so difficult to make a decision when you’re dealing with the shock of it all. In addition, it is such a rare cancer that the ordinary physician has very little or no experience with it (which is why my diagnosis took 1 1/2 years after a raised liver enzyme count!)…

    There are such wonderful and knowledgeable people here…you’ve come to the right place. Do seek a second opinion. Mayo Clinic has a call-in number where you can talk to someone whether you live in the area or not. It is definitely worth finding out all you can….

    Best of luck to you.

    Kathy

    #46693
    32coupe
    Member

    Hi Lots,
    I agree with Lainy – get a second opinion. If the cancer hasn’t metastisised (sp.?) I think it is too early to say that there is no treatment. Treatment does rarely but occasionally cure but often extends life.

    It sounds like you are describing a Klatskin tumor. I had one successfully resected 14 years ago. May God give you clear direction.

    Grace and Peace,
    bob

    #46692
    nur1954
    Member

    Lotsofquestions – Everything Susan said is absolutely correct regarding “cc.” There does not seem to be a ‘normal’ with this disease. It can be overwhelming and sometimes maddening. Lainy is right in saying to try and find doctors who have dealt with this disease…which is not easy. If you want to do the research, this is the place. And if you want a lot of support and love, this is the place. And if you want to just scream and vent, this is the place. Keep us posted and take time to breathe – Nancy

    #46691
    lainy
    Member

    Dear Lotsofquestions, welcome to our wonderful family. Sorry to hear about your Mother-in-law but it sounds like she has a wonderful daughter-in-law. When the doctor says there is nothing they can do you have every right to gather all the test results and to seek a second opinion. Where is your MIL being treated? Next, we do not ever put a time frame on life as we were not born with an expiration date on the bottom of our feet.
    What you can do to be a good advocate is to read up about CC as much as you can as to be forewarned is to be forearmed. Can you tell us what stage the doctor says she is at? Has he said why he can’t do more? Like how large the tumor is and if he feels it is contained?
    One last thing for now is, when you seek an Oncologist you want to know if he has treated CC before or even rarely.
    Please keep posting to us as you will get a lot of help here, we all care.

    #46690
    slittle1127
    Member

    Dear Lots – You are absolutely right that educating yourself is the best first step. While everyone reacts so differently to this cancer and there are many physical differences in where each one’s tumor(s) are located, etc., we have been told by more than one oncologist that frequently with inoperable tumors they say 4 to 6 months without treatment (chemo) and maybe up to a year with treatment. However, you will find people on this site that died 2 days after diagnosis and thankfully, those who are here 5 years later. It is very individual. No one reacts the same. My husband is 58 and his primary site of cancer is in the upper lobe of the liver from the pancreatic duct. He has not needed stents (so far), he does not get jaundiced, he has not had an infection since he was diagnosed in late July 2010. He has had other things – nausea, vomiting, weakness, water retention, pain. Every month they increase his pain patch to control the pain and we have vicodin for break through pain. He has changed his diet and a soft diet seems to help at this stage. I wish I could give you better information and as you spend time reading on this site, you will learn so much. I have done internet searches, but I have learned more on this site than anywhere else. Also, the kindest people you could ever hope to know are here. Welcome to our family although we are so sorry you had to find us. Post often, ask whatever questions you want, use the search bar for specific topics on this site. Embrace your good days with joy and appreciation and hold on tight on the bad days. It is a roller coaster ride and much of it is not fun. The good news is that you have her today to hold close, create precious memories, and let her know how very much you love her. Blessings to you and your family, Susan

    #4605

    Hi there… I have never participated in a message board before , but I stumbled across this sight last week while trying to educate myself. Everybody seems so kind , supportive and most importantly , knowledgable.
    My step-mother woke up Dec 30/10 looking juandice. She went to the hospital and by suppertime the docs were telling us that she had cancer in the bile duct. Her mass is at the top of the bile ducts running into ( or out of ) the liver. Her lymph nodes have been affected and the doctors say it is inoperable.
    In the 12 days since she has been diagnosed,she has had two failed stents inserted and today she had a stent put in from outside her body to the top of the liver with drainage into a bag. I am sorry , I’m not sure of the proper terms. The doctors have told us that this was our last option. Thankfully , the procedure seems to have worked…
    I have spent hours on the internet trying to find out what |I should be expecting next. I am fortunate enough that I have not been terribly close to somebody with any type of cancer before. I am afraid of what lies ahead of us. Her doctor keeps reminding us that this is an aggressive cancer. Is he trying to tell us that our time with her is very short ? What is short ? Two weeks, months or years ? Will she gradually deteriorate or will she become obviously sick all of a sudden ? Will she have extreme pain ? I know these questions are awful, but for me, the unknown and being unprepared is just as awful.
    If somebody could please give me details , despite how nasty they may be, I would truly appreciate it. I am tired of doctors taking something horrible and ugly and trying to put a positive spin on it for our sakes.
    My step mother is a kind, considerate, beautiflul, intelligent 55 yr old woman . I want to be able to give her the best care possible when the time is necessary . I believe the first step in doing that is educating myself … thanks so much

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