Newly Diagnosed

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Hello everybody!

Allow me to introduce myself! I'm a 45 year old man, living in central England. I was diagnosed with bowel cancer in 2018, and had a lower anterior resection of my bowel by laproscopy in December 2018. No stoma required. The cancer had spread into my bloodstream, and I started chemotherapy in February 2019, but had an extreme adverse reaction, and therapy was stopped after the first round. Since then, I was mostly getting on fairly well. However, I started having some symptoms that seemed to be similar to those I had when I was first diagnosed, and in February this year, I was taken in to hospital with excrutiating pain in my abdomen.

It took a while to pin down the problem, but eventually it seemed that I had a lung infection (non-covid!) that had inflamed my lungs, and they were pushing down on my gall bladder, causing it to discharge into my stomach. Once the lung infection was treated, this stopped, and I was sent home, apparently well.

But ever since then, I have had some odd pain, and strange symptoms, including a bubbling sort of feeling just below my sternum. I've been saying for some time now that I suspect my gallbladder was not right, though a plain CT scan in the hospital had not revealed anything. (I later realised this was because they had focussed on the lung infection, and not really paid attention to anything else.)

Now, in June, after I called my oncology support nurse to express my concerns, as the bowel symptoms were really very bad, another CT, this time with contrast dye, was ordered. I heard nothing for three weeks or so, but last week I was called into hospital to see a consultant for an emergency appointment. I had no idea which consultant, but presumed it was the same people who treated me in the past. This was not so, and I was actually seen by the hepatic-biliary consultant. She told me that the CT had shown my bowel to be clear, but that my gall bladder looked to be in a right old mess, as I had suspected.

I was told that it was impossible to be 100% certain without actually seeing it, but given that they treat gall bladders every day, they had every reason to think their initial diagnosis is correct. They did not think I had stones. With my past history, they believe that the cancer has indeed spread to my gall bladder. Consequently, they intend to operate as soon as they possibly can, and are treating me as an urgent case. The plan is to do full open surgery, as they are concerned that keyhole will be too risky. They will be removing my gall bladder, and parts of zones 4B and 5 from my liver - although if they see that the cancer has spread into the liver proper, it may require more than that. As yet I do not know when, but I was told that the meeting to schedule current operations is on Wednesday, and I should hear very soon after that.

I am not entirely surprised by the need to operate, but I had not expected the situation to be quite so grim. If they do spot cancer there, I am also fairly certain there will be chemotherapy in my future, too. But that is another bridge I will cross when I come to it.

Obviously, I am pretty much ignorant of what to expect with this surgery, and what life is going to be like once the gall bladder is removed. I am anticipating some lifestyle and diet changes at the very least. I am not a drinker - the last time I touched alcohol was the night I went into hospital in February, and then I had a half glass of fizzy wine. Since then, I haven't touched a drop.

What should I expect? And are there any reliable resources I can turn to so I can get informed about what I am going to be going through? I am absolutely not going to just do an internet search and let scaremongering drive me round the bend. Macmillan, and the wonderful members of this forum, have been so wonderfully helpful the past three years as I worked through bowel cancer, so I obviously came here to ask those with experience... what happens now?

Thanks in advance!

Robin

  • Morning Robin,

    I just wanted to say hi and let you know you're not alone.  I was diagnosed with stage 3 gallbladder cancer in 2016, aged 46 and it was a bolt out of the blue. I had a gallstones and had my gallbladder removed via keyhole surgery, a week later I got the call to go and see my surgeon and was told the news.  Fast forward 5 weeks and I had a liver resection of levels 4,5 and 6 as well as the gallbladder bed and a lot of my bile duct removed.  I went on to have 8 rounds of 'GemCis' chemotherapy.  

    The recovery from the surgery was tough at first but I learned to accept I needed help, I didn't realise how much the abdomen is working even to sit down! My advice would be to invest in lots of pillows, particularly the V shaped one as it was the only way to get in and out of bed and also after your surgery try and get out of bed as soon as you are told to, it's really does help your recovery, accept every and any pain relief offered too.

    As for the chemotherapy, it's tough going but you don't lose all your hair, I wasn't sick but felt nausea constantly so take your anti sickness pills even when you don't feel sick and most importantly, rest rest rest, the fatigue is like nothing I've experienced before.

    A little more background about me...

    Gallbladder cancer 2016, Thyroid cancer 2017, Ovarian cancer and recurrence of gallbladder cancer in December 2020 too.  All 3 of my cancers were totally unrelated and genetic testing can't find a link (familial etc) so my oncologists, surgeons and consultants say I'm extremely unusual. I had abdominal open surgery again in December for a full hysterectomy as well as surgery to remove 2 new gallbladder tumours in my colon, they also had to remove some of my bowel during the surf as one of the tumours had grown in it. 

    I've just completed 9 rounds of GemCis again (finished 2 weeks ago) and my latest CT scan showed no evidence of disease. I know I'm not curable but I'm also not terminal either they call it palliative treatment for gallbladder cancer as there really isn't a cure per se but I think age and fitness is a big factor in my journey and I hope yours will be the same.

    So it is do'able you just have to keep on doing what the experts tell you to do and have a massive amount of fortune on your side!!  

    Good luck with your surgery on Wednesday x

    Colette 

  • Thank you Colette! That sounds like a fairly epic journey. I will take your advice! I remember how hard it was after the bowel surgery, so I am expecting the similar sort of impact on my energy levels. But the specific advice about the pillows will be taken.

    They will only have the meeting to decide when to operate on Wednesday. They should then be able to tell me the proposed date. I am not expecting it to be instant, but soon would be very much appreciated, as the pain is getting increasingly worse.

    I'm a fighter, this will not be permitted to defeat me! I really hope you can keep going. It does sound like they have at least managed to get you to a much better place, even if the treatment was extreme.

    Thank you!

    Robin

  • Best of luck that you get a date relatively quickly and can focus your energies on that date! I always live by the ‘deal with what’s in front of me and ignore everything else’ motto, that way I don’t get consumed or overwhelmed with it all Robin, I also live for today and let tomorrow take care of itself too Rofl  

    Colette 

  • I have the pre-operation assessment on Wednesday, so I am pretty sure they will tell me then when the surgery will take place. They are moving a lot faster than they did for my first operation, so I suspect... soon!

  • Best of luck with your operation and keep us posted on how you’re getting on Thumbsup tone2

  • The assessment is now Thursday morning. Hopefully then they will tell me the date for surgery! I really want this over and done with now! :D

  • I had the pre-operative checks done today, and spoke to anaesthetist. It all went well, although they were alarmed at my long list of medical issues and allergies. But none of them are actual risk actors, for this surgery, anyway. But nobody I spoke to had a clue when the surgery was going to take place. I finally called the admissions unit, after some ringing around to get the number, and was told that at this time, they do not actually HAVE a date for the operation. Breach date (the date by which they MUST have done the deed, according to the rules of the NHS Patient's Charter) is December 14th. It could be earlier, but it could be later as well, as breach dates are notoriously hard to keep. If I end up having ANOTHER christmas day in hospital after cancer surgery, I am going to be very cross indeed... Stuck out tongue

  • Wow ,thats not very helpful to you, maybe keep pestering them until you get an earlier date as you should not have to wait that long . Take care 

                                             Chris 

    Its sometimes not easy but its worth it ! 

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