Carol's story so far

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This topic contains 1 reply, has 2 voices, and was last updated by  Helen_ammf 1 week, 5 days ago.

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    I was diagnosed with primary Cholangiocarcinoma on 31st July but it has been a long journey to get here since March this year.

    I had a secondary cancer successfully removed on 12th May but did not know then that I had this ‘silent’ cancer. I did not have any of the classic symptoms for Bile Duct Cancer besides a dull aching pain under my right shoulder blade which I put down to sitting at a PC all day and just a bit of itching. I first visited my GP in March and was referred to a Gynaecologist and Urologist to investigate bleeding. I ignored a consultants advise that I could delay or not even bother to have a polyp on my Uterus and a 9cm ‘benign slow growing’ Ovarian cyst removed. I had both Ovaries removed on 12th May.

    On 1st June the biopsy shocked everyone and muscinous adenocarcinoma in Krukenberg deposits on both Ovaries that had metastasised from a primary in the Upper GI area. I was referred to my Oncologist and then began the journey of tests and scans to locate and then successfully remove a 4cm tumour from my Liver that was eventually identified to be the primary tumour. ( A long story….. including ruling out a suspected recurrence of a perhaps undiagnosed Gallbladder cancer 4 years ago when an inflamed Gallbladder and Gallstones were removed and entertaining the notion of a primary cancer of unknown origin, hidden cancer which I had never heard of before. It perplexed me and also the consultants and MDT or so I believe.)

    After the tumour on the Liver was removed on 14th July it was discovered to be attached to the Intrahepatic Bilary Tract – so I have Bile Duct Cancer, stage 4. The disease had spread to 2 local lymph nodes which were removed but no other Peritoneum disease was found. Part of the Liver and the Appendix was removed as a precaution. A 17mm Ommntal nodule of ‘indeterminate’ origin has increased in size over the last few months and systemic chemotherapy of Cisplatin and Gemcitabine is due to start next week. So mine is not your standard progression of an unusual type of cancer so I am not sure this experience would help those asking about successful operations on secondary cancers? I was so very fortunate that the primary cancer was found asymptomatically while it was still operable.

    I spent August recovering from open surgery and visited Penny Brohn in Bristol mentioned on AMMF and took part in a 2 day ‘ Living Well with Cancer’ course as an introduction to the Holistic approach and gained excellent advice on nutrition and how to cope with stress and relax and help my immune system. I would really recommend this to anyone considering it. Everyone there is so kind and supportive and extremely professional. The setting is peaceful and restorative. It gave me the tools to help me try to cope.

    Also, I have greatly appreciated reading about everyone on the forums’s experience with chemotherapy and being allowed to read about some of their journeys.

    I understand that Cisplatin and Gemcitabine is the chemotherapy that is standard treatment for this type of cancer that has spread. While I am fortunate that the primary and one secondary have been removed, this does mean I will be having chemotherapy with no way of measuring any success of the treatment until it reappears? Which is perplexing. Will stay positive and not entertain that prospect. However, I have read about some others on the site having genetic testing to try to find treatments and suitable clinical trials. Molecular screening is mentioned on AMMF for immunotherapy which I am particularly interested to learn more about and wonder if it would be suitable for my type of cancer at this stage of treatment in addition to chemotherapy or in the future?

    Any advice and experiences would be appreciated.

    • This topic was modified 1 week, 5 days ago by  alex.
    • This topic was modified 1 week, 5 days ago by  alex.
    • This topic was modified 1 week, 5 days ago by  alex.


    Dear Carol

    What a convoluted and stressful pathway you have been through to arrive at your diagnosis of cholangiocarcinoma. Many thanks for sharing this with all of us on the forum – although your experiences are unusual, I’m sure many will certainly relate to quite a few of them.

    Thank you for letting us know that you followed up AMMF’s link and spent some time on Penny Brohn’s ‘Living Well with Cancer’ course*. They are very helpful, compassionate and empathetic, as you have found out.

    Assuming the metastatic disease you now have is not operable (and worth asking about if you haven’t already) then yes, the Gemcitabine and Cisplatin combination is the usual treatment for inoperable cholangiocarcinoma. In answer to how you will know how things are, you should be scanned at the half way point through the Gem/Cis course to see what effect the treatment is having – providing your cancer is stable or getting smaller, then treatment will continue. Then you should be scanned again at the end of the course, and then at set intervals to check how things are.

    In the meantime there are a couple of things you could consider, one of which is to ask for a second opinion from a named cholangiocarcinoma ‘expert’ to double check that the treatment pathway you are on is correct for you, and also you could consider molecular screening. This would show which gene mutations are ‘driving’ your cancer, important information if you wanted to pursue any of the trials looking at inhibiting those specific mutations at some future point. The Sarah Cannon Institute has some clear information on molecular profiling:

    I hope some of this is helpful for you, and that others will come in and share their experiences with you. And please post again if there’s anything else you think we can help with, and to let us know how you get on.

    With best wishes


    *The link for others who might be interested:

    Please note it is not appropriate for AMMF to give specific medical advice or recommendations, but we do have a wealth of experience and information which we are always willing to share, whenever possible.

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