ruali

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  • in reply to: Hilar Cholangiocarcinoma #81725
    ruali
    Member

    Hi All,

    Just wanted to let you know that after 12 months of diagnosis of CC (our first doc predict that she has 6 to 12 months), my mother passed away last month. We’ve been to 3 different hospitals here in India and met with several doctors who are not able to give her any kinds of treatment other than placing stents after stents. She had 1 metal stents with 2 plastic stents.

    I think that one of the reason why she was with us for 12 months is that, she cannot read English and she never knew her illness was cancer till her last breath. If she knew that she had cancer, i don’t think we will have her this long. We loved her and take care of her as much as we can and never do anything that will hurt or worried her. We never have any family argument in front of her for 12 months.

    On 30th Jan, my youngest brother was diagnosed with septicaemia and was in ICU. We never informed my mother about my brother’s illness as she was weak that time. We told her that he is going to be alright and fortunately she got good sleep the night when my brother was unconscious. On 31st Jan, we woke her up at 6 AM to let her know that my brother passed away at 5:25AM.

    From the day my brother died, her health spiral downhill, she started having nausea, pain on her shoulder and her stomach becomes more and more swollen. We went back to the hospital and she passed away on 14th Feb 5:25 AM exactly 2 weeks after my brother died.

    Losing 2 family members in 2 weeks is really devastating for the rest of us. But we are trying our best to keep a positive mind. And I would like to request this CC family that, if you have any members of your family suffering from CC, please love them, talk to them, do their favour, make them happy, don’t hurt their feelings, cos you never know when this deadly disease will take away your love ones.

    in reply to: Hilar Cholangiocarcinoma #81724
    ruali
    Member

    Hi All,

    Am back to give a quickie update. So we decided to get a second opinion from one of the biggest cancer institution here in Asia and met with an Oncologist. We have done several tests and here is the results –

    CEA 2.38
    CA-19.9 < 2.00 Bil – 1.83
    Alb – 4.0
    WBC – 8.67

    MRCP (31.03.14): Non-visualization of proximal CHD. Distal CHB 6.5 mm
    Pneuobilia bilaterally

    CECT Chest, Abdomen, Pelvis (TMH) on 07.05.14:
    Biliary stent in situ (CBD & CHD) with pneumobilia. No evidence of malignancy

    Imp: Benign biliary stricture
    However, since very old h/o cholecystectomy in 1992, risk of malignancy is present

    Plan: Close observation
    Review with PET-CT after 2 months

    Now i am confuse whether to believe this knowing that there are lots of false negative tests.

    in reply to: Hilar Cholangiocarcinoma #81720
    ruali
    Member

    I just want to include the cytological examination results, i am not sure if this is going to help us find the right diagnosis –

    Specimen Type : Smear
    Microscopy : Smear shows benign biliary epithelial cells in cohesive sheets and dispersed singly admixed with fair number of neutrophils. Backgroud shows microorganisms (bacilli).

    Impressions : Acute cholangitis. Negative for Malignant cells.

    in reply to: Hilar Cholangiocarcinoma #81718
    ruali
    Member

    Thank you all for your input. We will go to a different oncologist to make sure that she is rightly diagnosed. She is doing very well after the metal stents only that she is having this mild pain in the rib cage area near the stomach while coughing or sneezing. As per your suggestion, i will take her to the gastro to check on her stents again if it is rightly placed.

    in reply to: Hilar Cholangiocarcinoma #81714
    ruali
    Member

    Thank you Lainy for your warm welcome and your suggestion. This site has given me so much relieve knowing that we are all in this together fighting for this dreadful illness. I will try to give regular updates on the progress of my mothers treatment.

    I want to know if this bilary brushing is accurate or not? I have research the internet and the number of false negative is around 45%. I will talk to our doctor to see if they can take biopsy to secure the findings.

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