Gallbladder cancer

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I had my gallbladder removed July 1st this year, as it was badly infected and swollen. When I went back on the 17 August for my check up I was told that it was cancerous and would need an operation even if my scans and blood tests came back clear. As you can imagine I was stunned. Since then the only people I have talked to is a specialist cancer nurse and finally on the 20 September a cancer surgeon who told me my cancer was a t2 cancer and it might have passed to my liver and he wants to do a liver resection even though everything has come back clear. My GP has told me that I should be seeing an oncologist as they are the only person who can discuss treatment with me, but I was told by the surgeon that I only get to see a specialist if I am having chemo, is this true

  • Hi Tucker, 

    I too had my gallbladder removed due to gallstones back in 2016, (I was 46 at the time). I also had a T2 adenocarcinoma and I went on to have a liver resection 5 weeks later. I then went on to have 6 months (8 rounds) of chemotherapy. 

    In my experience as a relative veteran these days, you usually have your surgeries and once healed you see an oncologist to discuss treatment options, so yes in the UK (not sure where you’re based) this has been my experience. 

    Best of luck 

    Colette 

  • Many thanks for your reply. I have turned down the operation due to a number of factors. I have asthma, oesophagitis and acid reflux. I am allergic to most painkillers and anti-inflammatory meds and allergic to some anaesthetics. Even though the anesthesist said in his letter that I had no history of problems with anesthetics and that I had no medical allergies. So I am opting for the twice a year scans. Not ideal but no other choice really

  • And that is your right to choose what is right for you and your body. I commend you making the choice that is right for you but I would suggest it won’t hurt to meet with the surgeon to hear what he has to say maybe. 

    The reason I say this is that like you my tumour was T2 (encapsulated within the gallbladder apparently) but I went forward with the liver resection and it turned out that I had a tiny tumour in the gallbladder bed which wouldn’t have been found if I hadn’t have had the surgery. The ct scans showed no evidence of disease, it missed it. 

    I have had metastasis 3 times and I’m now stage 4 (incurable but not terminal) and without the surgeries and chemo treatments I would’ve left this planet a long time ago. 

    i hope you keep well. 

  • I have talked to the surgeon and asked him about the lymph node and very small tumours that were removed when I had my gallbladder removed. He asked how I knew about them so I told him my G P had told me. So he did say that they were removed and that they were non cancerous. My T2 was actually growing outside of the gallbladder from the inside. I asked him why it had taken so long to notify my. From the first of July to about the 10th of August. He said it sometimes takes time for results to come through. So I asked him how come my GP got a report from him dated the 4th of July stating that I had gallbladder cancer. He didn't answer. There had been so much misinformation and lies that I really don't trust them. The specialist nurse said I would be right as rain a couple of weeks after the operation, but reading what the majority of people on here have said, that's just not true. So have decided not to go ahead with it

  • Oh that is awful treatment, did you ask to be copied in to all correspondence? I find it helps me to see exactly what is being written and shared about my body by relative strangers, I’m on the same page and know specifics of my disease and plan  

    To be honest I was treated remarkably well by my surgeon, after I had my gallbladder removed he rang me 8 days later asking me to go and see him that day. It was at that point I knew it was bad news. But he had already set a plan in action, told me they’d found cancer and he was referring me to a specialist surgeon. I am now 6 years deep and I still have the same surgeon and clinician nurse, so I’ve been incredibly lucky and they treat me like a friend now. 

    i think you’re incredibly brave to do this the way you want to and I admire you’re strength. 

  • Good evening Tucker, i agree with Smiffy-69 about the surgeries, biopsies etc are done by the surgeons and the treatment is done by the oncologist doing it this way stops any misunderstandings although you usually find they will both consult one another to offer the best outcome. Hope all goes well,take care.

                                                                                      Chris.

    Its sometimes not easy but its worth it ! 

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  • Hi, I had my gall bladder removed in August, biopsy discovered T2a cancer, Six weeks later I had bad stable angina, spent a week in Cardio Ward for heart attack ( no real symptoms ) my heart had done its own bypass apparently as a main artery near the heart was blocked!  On the usual multiple heart meds now!
    Got an appointment next week with surgeon for liver and lymph node removal discussion but trying to find out life expectancy for this or perhaps Chemo only as an alternative if the life expectancy is the same. Anyone have similar experience?

  • I had my gallbladder out on the 1st July and was told on the 17 August that I had T2 BN0 R0 gallbladder cancer. I have not been offered chemo as an alternative to liver resection, just surveillance scans. After being told everything that can go wrong I have decided to go for the surveillance scans every six months. Nothing has shown up on my scans or in my bloods and for me I feel that the cons far outweigh the pros on this operation. I haven't had a very good experience with my surgeon or cancer nurse or the anaesthetist so my case is difficult. I have a lot of allergies to pain meds and they still say that I can take gabapentin which has been told to them that is one deadly med for me. So I don't really trust them . I was given a 5% mortality rate, a 20-30% mobility rate (whatever that is). And a 1 in 189 mortality rate to survive 30 days after the op. So for me it was a no. But you need to speak to your team and the anesthesist.

  • Thank you Tucker. I live in England.. For my part, if the life expectancy is the same I can’t see the point of having further surgery and a long recovery period. I haven’t been given any alternative treatment advice, just a phone call to see if I am prepared to have the op. It should have been a face to face to discuss risk and alternatives really.I guess the Surgeon will explain more when I see him. With my heart problem I’m reluctant to have surgery if it can be avoided. Thanks again.

  • Hi Dunmow, I am also in England. I hope you get the answers you need, and don't let them talk you into the operation. If you feel it's not right for you have a good long think about it. Speak to your heart specialist and raise your concerns with the anesthesist. The surgeon cannot do the operation without the anesthesist giving the go ahead. I refused as I have COPD and chronic asthma and bronchitis but was still passed as very fit. Please take your time in making your decision as it is a very major operation.

    Best wishes Tucker