Newly diagnosed father

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  • March 16, 2011 at 9:00 pm #48881
    cherbourg
    Spectator

    Jennifer,

    I live in New Bern, NC and my Mom and Dad live in Greensboro, NC. My Mom was treated at Duke Medical Center by Dr. Michael Morse.

    I know the SC folks will weigh in here shortly.

    Give yourself permission to cry and vent anytime. We are all here for you! This is a time in your life to take it 5 minutes at a time….then do the next 5 minutes.

    Hugs!
    Pam

    March 16, 2011 at 7:20 pm #48880
    lainy
    Spectator

    Hi Jennifer, go ahead and have your good crys. It is good to let it out, better than holding back. If you take a look at our First Page with all the Options you will see one that says Hospitals. That should help you a lot. I know we have members from S.C. who may see this and also help you out. Not a vague question at all as you will see the many answers. Good luck!

    March 16, 2011 at 4:55 pm #48879
    jennifer1982
    Member

    Again, thanks to everyone for everything. I know I will need continued support because usually on the outside I am very strong but there are times at home when I just have to cry and I really need an outlet. I was also wondering on what everyone thought were the best hospitals for this cancer? I know that’s kind of a vague question, but my dad is seeing a oncologist in Columbia, SC and he is going to see an oncologist at Medical University of South Carolina in Charleston next week. I have heard it is a good hospital, but I just wanted to see if anyone knows of any other good hospitals in the southeast US. Thanks so much!

    March 16, 2011 at 1:10 pm #48878
    cherbourg
    Spectator

    Hi Jennifer,

    So glad your Dad has a wonderful advocate. One of the things I did for my Mom was to start a notebook. I made sections for labwork, CT scans, notes, a question section and also a folder for expenses.

    I kept receipts for travel, gas, parking garages, food and mileage. All of these were tax deductible and Daddy had a complete record when it came time to file taxes and he didn’t have to hunt for anything.

    I also made a spreadsheet that had all of mom’s medications, who prescribed them and the frequency taken. As her illness progressed it was so easy to just print the sheet before we went to appointments and hand them to the nurse.

    I also had a digital recorder that my Dad could use to record questions and answers.

    At every appointment I asked for copies of labwork, scans or anything and filed it in my notebook. I also kept a copy of my Mom’s power of attorney and medical power of attorney as well as the HIPPA forms.

    I don’t want this to sound overwhelming but I can’t tell you how helpful this became. Mom was spared having bloodwork repeated when I could hand the doctor results done a day or so before by Mom’s regular doctor. I had copies of scans and reports at my fingertips.

    I’m in the medical field and was the one that diagnosed my mom. Even with that experience there were times I had to keep asking and questioning doctors until I was satisfied with the answers. Just remember they are working FOR YOU!!!…..

    My Mom was 77 when diagnosed and still working full time and walking 7 to 10 miles a day. She was involved in everything and she and my Dad were married for almost 58 years. This is a tough journey but we are all here for you! Please come often and bring your questions…

    I’m sending hugs and prayers to you and your family.

    Hugs,
    Pam

    March 16, 2011 at 7:18 am #48877
    slittle1127
    Member

    Dear Jennifer – We will hold out only the best hopes for your dad and your family. CC is such a roller coaster ride, but if you give yourselves a chance, you can enjoy every moment with him. Take pictures, plan family times, share all the love in your heart. Please keep us posted and we will do our best to answer your questions and encourage you. Blessings, Susan

    March 15, 2011 at 11:08 pm #48876
    jennifer1982
    Member

    Thanks to everyone for the advice and well wishes. Andrea – I am from Columbia, SC and my dad will be seeing another oncologist in Charleston next week. He has some follow-up appointments with his doctors this week and I have already emailed him several questions I want him to ask them regarding his symptoms, diet, etc. And my boyfriend and I are going to write down a list of questions for the appointment next week and bring a notebook to write everything down. I have taken the role of my dad’s “advocate” so I am trying to do everything I can to make sure he is taken care of. I guess it is nice, yet sad, to know that there are other people out there dealing with the same thing. In the beginning I felt very overwhelmed and confused but I am glad I found this discussion board for not just advice, but support as well. I will definitely give updates on his status and also what the doctor next week says. I guess I am still scared because I don’t know what to expect never having dealt with something like this before. Again, thanks to everyone for the support and I wish everyone else luck in their journeys.

    Jennifer

    March 15, 2011 at 8:03 pm #48875
    pcl1029
    Member

    Hi,
    My sister-in law asked me what to do after she was diagnosed having CC 3mo ago.I told her to bring a recorder for the 1st appointment with the medical onocologist so she can recall the treatment plans.Her doctor spent 40min from assessment of her condition to finalized her treatment plan by using clinical trial.
    Most importantly,I told her if she didnot understand what the MD said,asked him/her again until she got some ideas.She did and emailed me the recordings so her friends in church and I can help her out more thru our connections.;I also asked her to obtain a copy of the procedures(ERCP,Cat Scan etc.) each time she had one,so that she can have a better picture of her progress.
    If your father’s condition is getting worse before 3/23(more jaundice in the eyes and under the tongue;darker unine;clay-color stool;shortness of breath and edema or pain);Call your primary doctor. My sister-in law had to go to the hospital and remove about 4 liters of fluids from her abdomen(ascites) and got duretic to reduce her edema before her oncologist appointment.
    God bless.
    I

    March 15, 2011 at 7:39 pm #48874
    lainy
    Spectator

    Dear Jennifer, welcome to our wonderful family but sorry you had to join. You answered your own question beautifully in the fact that you already have a visit set up for a second opinion. Good thinking, good job. Your father may have developed an infection from the stent which could cause most of the things happening to him now. If there is an infection or a blockage the bile cannot flow freely and would cause all those things to happen again. I believe you will get more answers and good treatment from your visit next week. Please keep us posted.

    March 15, 2011 at 7:29 pm #48873
    andie
    Spectator

    Hi Jennifer,

    Welcome to our CC family. Where about are you from?

    Have you got 2nd and even 3rd opinions? This is very rare and the more opinions you get the better, even if they all say the same then you know you have tried.

    Before they let you Dad out after his stent did they check the bile level was coming down? I know my Dad looked jaundiced throughout his CC even when his stents were working. Tell your Dad to drink lots as it helps flush the bile out of the body.

    Good luck with the appointment next week. I’d write a list of questions down that you would like to ask, take them in with you and ask the Doctor to write down and discuss the answers with you.

    I’m sure someone else will be along soon with more advise soon

    Best wishes

    Andrea

    March 15, 2011 at 6:30 pm #4902
    jennifer1982
    Member

    My name is Jennifer and my father was diagnosed with cholangiocarcinoma about three weeks ago. Of course my family is devastated. He had gone to the dr because he was losing weight/muscle mass, decreased appetite, itchy skin, jaundice skin/eyes, etc. He was diagnosed by CT scan and biopsy. At first they said it was liver cancer, then something else, then finally they told us it was cholangiocarcinoma. We’ve been having a really hard time getting information from the doctors because they seem to never be available, etc. After he saw his oncologist the day after he was diagnosed, he was admitted to our local hospital. He was put on IV fluids, antibiotics, etc. He also had two blood transfusions due to low hemoglobin. After his doctors all reviewed the CT they said it was affecting 2/3 of his liver and appears to be in his lymph nodes. He had a procedure while he was hospitalized to put a stent in to drain the bile. He was sent home after several days in anticipation to go to MUSC to see a specialist there. Long story short, he has an appointment on 3/23 to see a medical oncologist.

    Also, he is getting very jaundice again, still has decreased appetite, lack of energy, shortness of breath, and swollen ankles. I know this is a lot of information, but I just wanted to get advice/feelings on my situation and see what other people’s experiences are with disease at this stage. I have no idea what to expect and the doctors have not really told us much either. I’m hoping that our appointment next week will shed more light on things.

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