Diagnosis

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Hello everyone. 
My mummy went into hospital on the 18th of February as she turned jaundice. She had an ultrasound done which the doctor came back after it was done said she had gallstones and would need a procedure to have them removed. (We later found out this was an inconclusive scan?) which is wondered how they could tell my mum what her problem was.. they ruled out cancer. She then had a CT and an MRI that showed up something more sinister. We found out 3 days later she had liver cancer but they said the good thing was it could be operated on. So she had her operation on the 12th of April. After her operation she was in icu. She never recovered, she developed a clot in her portal vein and lived on to the 8th of may , she passed away sadly as her liver failed. But before this we never were told anything about gallbladder cancer or that my mum was terminally ill? Turns out all along she had stage 4 gallbladder cancer. I’m just wondering has anyone had the same situation, can this be missed? 

  • I'm incredibly sorry to hear your mums story, it's a very difficult cancer to have. Most people (sadly) don't find out until the disease has progressed to the later stages when signs of jaundice appears.

    Some of us are diagnosed accidentally, as was my case.  I had indigestion for years, I had gallstones and once I had my gallbladder removed I was told there was a tumour inside of it.

    My gallbladder cancer had spread to the my liver and like your mum I too had liver surgery, followed by 6 months of chemotherapy.  I'm one of the incredibly rare and also lucky ones with gallbladder cancer because I am on year 7 now with this disease, mine has recurred a few times now, I'm also stage 4 and incurable, but I've been fortunate that although new tumours have popped up in lots of places I have been able to have surgery each time and chemotherapy twice now and it has been successful for me so far.

    So I guess to answer your question, I think it's more common than you'd think that loved ones are diagnosed with gallbladder cancer when it's too late because it's a rare cancer, because it doesn't really show symptoms until its too late and there is no routine test to diagnose it like other cancers. 

    I'm really sorry for your loss x

  • thank you so much for your reply  you are incredibly lucky and I wish you many many more years of beating this horrible illness. 
    I miss my mum so so much. Since she went into hospital it was a short 11 weeks to she was no longer with us. So from any of your experience is it normal for the doctors to think you have liver cancer when it was actually GBC? I knew absolutely nothing about cancer untill this happened my mum so I may have no idea what I’m talking about. During her op she had 2 thirds of her liver removed, gallbladder and bile duct x

  • I think (and it's only my own opinion and in no way am I an expert) that gallbladder cancer is so rare I don't think it's the first conclusion most doctors jump to. My own surgeon was blase about the gallstones I had and whether it was worth removing my gallbladder, soon changed his tune when the lab confirmed i had cancer.  

    I was relatively young to be diagnosed with the cancer at 46 and was told it's usually a cancer that strikes much older women (more so than men).  So again I suspect because of blood tests and maybe your mum's liver function tests it was assumed to be liver cancer, again I'm not an expert by any means.

    I can only advise that maybe you can reach out to the surgeon's secretary and ask if they have a nurse clinician that was involved in your mum's case and see if she can help you understand what happened and how the gallbladder cancer was missed ? In my experience the nurse clinicians are brilliant, mine works for Macmillan but works closely with my surgeon and she is a great source of information and also help.

    I also understand your pain, I lost my mum who was an incredibly healthy and active young 77 yr old overnight, she suffered a massive heart attack 5 hours after we had been laughing on the phone together, sorting out plans together for the following day  She and I were best friends and even though it's 5 years for me I talk to her everyday and still miss her terribly. 

    I hope you can find some answers or some comfort in what is a terribly confusing and desperately sad time for you x

  • Hi, Smiffy

    I'm wondering how you are? There is very little posting on this forum lately.  You are our super warrior!

  • Hi Irisgal, health-wise I'm incredibly well thank you,. How are you doing? We are enjoying the hot weather right now in the UK (you're in the states aren't you?) after what has been a miserable summer (weatherwise).

    I think the group has been a little quiet recently but I always hope that's a good sign, that people are doing ok xx

  • Yes, sometimes no news is good news!

    I am doing well,  now we are finally getting cool weather.

    I am starting Xeloda cycle 7 of 8, feel pretty well today. I do have some hand-foot and fatigue, but I am doing better than I expected.  So, I guess we wait....