Newly diagnosed

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Hi I am 43 years old and yesterday was diagnosed with Metastatic gallbladder cancer which has infiltrated my liver.

I have no symptoms other than abdo and side pain. 
I went to work as normal on the morning of 2nd April and ended up in A&E with the pain.

They initially suspected gallstones but this did not show on ultrasound sound so I had CT, MRI and liver biopsy and yesterday was given the devastating news that I have advanced adenocarcinoma.

I have been told that my treatment will involve chemotherapy but only to slow the disease and not as a curative.

I am numb with shock. I am seeking a second opinion but just need to talk to someone who can relate to how I am feeling.

My family and friends have been great and I am trying to remain positive but not sure how I do this anymore.

  • Morning Kiss Fan, my name is Colette I'm sorry to welcome you to this club but welcome anyways.  I was 46 when my story started, I am now 55!

    I know you'll be feeling every emotion conceivable right now, like you, my gallbladder cancer was found incidentally as in I had indigestion for years, turned out it was gallstones and once I had mine removed I was told I had stage 3 GBC that had gone into my liver.. it's terrifying.

    I went on to have a liver resection and as you mentioned chemotherapy. I had the chemo Gemcis (gemcitabine and Cisplatin) for 6 months. Yes it isn't a cure but please do have hope because this was in 2016. 

    Mine did metastasise to my abdomen and bowel in 2021 and again in 2022 it came back next to my bladder so I had further surgeries, followed by 6 months of chemotherapy.  

    So, as devastating and terrifying all this is right now,  there is hope that you can get through it, it won't be a walk in the park, nothing worth having comes easy I guess, but I am now on year 8 of this battle with gallbladder cancer and if it makes you feel any stronger, I also had thyroid cancer and mucinous ovarian cancer which were both primary cancers as well as the metastatic gallbladder cancer.

    Reach out anytime 

    Colette x

  • Hi Colette

    Thank you for your response what an inspiring story. You are the hope that I need right now. 
    When I asked if surgery would be an option for me they said no because it is too advanced and there are a number of areas in the liver affected.

    They did however say that my progress would be monitored and they did not rule out surgery at a later stage if I respond well to chemo. 
    I live in Northamptonshire and only have a non specialist district hospital hence why I have asked for a referral to one of the London hospitals to make sure the treatment plan is the best one for me. 
    I thank you so much for reaching out and so quickly as all the online materials are so negative.

  • Oh I know exactly what you mean regarding Google etc... it's such a lonely cancer to have because it's rare and usually affects much older people. I felt lost and entirely alone at first diagnosis, hardly any information about gallbladder cancer unless you go down the rabbit hole of international published papers and articles that made zero sense to me! 

    My advice is this... This is your life, your body and no one will be a stronger advocate than you, so don't be afraid to ask the questions, don't be afraid to ask about clinical trials.

    My mantra is 'My body and I'm the boss of it'.

    I know I'm incurable, but I like to say I'm living with not dying of cancer. I found writing a positive note every single day for 100 days (yes sounds all new age) helped me, it took my mind off theRoflh*t situation I was in. Even when I felt there was no positive I would write that I was positive that I had no positive they day Rofl.

    I can also send you a link to a little blog I write, it's mainly about my life and how cancer has affected my life, (but that's for another day.

    Colette x

  • Ps.. I'm in the north west so have access to the best hospitals and treatment centres, Clatterbridge for example. I hope you get your second opinion from further afield x

  • I have thought a lot about what you have said today and shared your story with my husband and family. We are trying to remain positive. Positive mind, positive attitude and positive outcomes are our aim so I love the idea of the positivity notes I will try that myself.

    My GP is calling me tomorrow to discuss the second opinion referral and I have looked at the cost of a private healthcare consultation too so I am pushing for what’s best. 
    I will fight to be an inspiration to others like you have been for me and tell my story in years to come just like you are doing now. 
    I can’t thank you enough you are just what I needed today x

  • Hi

    Sorry  to hear your news.  I was similar, A&E 15 Dec.  But they did not diagnosis me until the beginning of Feb.  So you have been quick.

    After a biopsy of my lymph node near my liver they said I had cancer of the bile ducts but couldn't establish the primary source.  But because of the CT scan it is likely gall bladder vicinity.  I too have been classed as incurable,  but to me that doesn't mean a death sentence, yet.

    It only means that in their eyes because  it has spread they can't  cut it out and then blast you to stop it spreading.   However, what we do I  the meantime to help ourselves,  through positivity, diet, to name two,  cannot be emphasised enough.  It is a case of coming to terms with it, and getting over the shock, take one day at a time.  I am blessed with a great strong network of family and friends, lean on them, ask them to be strong for you.  

    When does your treatment start, do you know what drugs you are having?

  • Hi 

    Thank you for sharing your experience with me I am sorry you’ve had to go through this too. 
    I am learning the power of Positive Thinking and like you said turning this into an opportunity to live rather than anything else. 
    It still seems unreal to think just 3 weeks ago I went to work as normal then by the end of that day my life was changed boom just like that!

    I met the oncologist today and I will be starting on Gemcitabine, Cisplatin and Durvalumab either next week or the week after. He has put me down for one day of treatment every 3 weeks for 8 cycles but will reviews scans and bloods during that time to determine progress. 

    Can I ask when you started treatment and how it has been for you? 

    Once again thank you so much for replying I have an amazing friend and family support network but find talking to people who have first have experience is so helpful to me.

  • Hi Kiss Fan

    Sorry it has take a week to get back to get back to you, too much going on some days and definitely a case if pacing yourself sometimes.

    I am on the same immunotherapy and chemo drugs that you will be on.

    Day 1 of my 4th cycle starts tomorrow.  My first treatment was on the 22nd of March. If you want to know what to expect I am happy to share my experience, though I am sure each of us might react a little differently,  there will be "common" reactions. 

    If you haven't already started, then be warned no matter what time your schedule says that the treatment  will take. Day one when you have immunotherapy & chemo  is a long 10hrs.

    I am based in Kent.

    Shout out if you want the nitty gritty, and how I have tried to combat some of it.  I will answer tomorrow when I have my 10hrs at the "office" .  To me it is a job that I need to do and so just get on with it. 

    Best wishes 

    Barbara. X

  • Checking, did you get my reply,   I can't see if it has gone

  • Hi wee Scot’s lady,

    Thank you for your reply!

    It is good to hear your attitude to treatment.

    I had my first round yesterday and luckily started at 9am and was out by 2.30 so I think I got lucky.

    They weighed me beforehand and then afterwards and I had to have frusemide as I weighed more than 2kg between the pre and post weight has this happened to you before? 
    I felt quite a bit of pain last night and found it difficult to sleep but today I have been much better. 

    I am still very early on in my cycle of treatment compared to yourself so any advice and tips are welcome.

    I hope your treatment went well yesterday too xxx