LVSI / liver issues anyone?

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I recently finished CRT for T1N0M0 anal canal cancer and am going for the first follow up with my consultant on Thursday.  The original biopsy / (surgical removal) didn't get a clear margin and said it was grade 3 (undifferentiated) with LVSI.  The reason they originally tried to remove it was because previously it was AIN3 rather than SCC - everything says anal canal cancer shouldn't be surgically removed because of the likelihood of not achieving clear margins and the potential risk to the sphincter during subsequent RT, but hey ho....

In week 6 of the CRT I was admitted to hospital twice with temperature spikes and given antibiotics.  At the 2nd admission my liver enzyme ALT was 200+ (and should be max 40) so I've been having repeat blood tests since - the latest was still 176 but the consultant has said provided it's still coming down at the next test she's not worried and it's probably just due to the chemo.  I've also had high bilirubin levels which they've put down to me having Gilbert syndrome and why I only took capecitabine for the first week and then had 5FU for week 5.  My bilirubin was 26 at the last check (should be max 21).

Everything I've read about high ALT levels talks about liver injury, but says that reactions to capecitabine and 5FU are rare.  Antibiotics can also cause liver injury, so that is a possibility, but it implies that the reaction occurs after weeks of taking them rather than immediately.  I hardly ever drink alcohol, so it's definitely not self inflicted!

I'm now paranoid that the liver issue is actually a metastasis.  Has anyone here had a liver met and can you tell me about your experience please?  I've read that surgery can actually increase the chances of spread, and I've had that plus the LVSI.  I'm 51 and have previously had breast DCIS (surgery plus radiotherapy as I was "young" at 42) and CIN1.

I'm trying to get as much info as I can so I'm ready to ask lots of questions at the appointment.

Thanks a lot,

Kate

  • Hi Kate

    I completed my chemo radiation treatment in August last year. From week 3 my liver enzymes were gradually getting higher and were still high when my treatment ended. I wasn't told the actual number but my oncologist was concerned and sent me for an ultrasound of my liver which worried me but luckily i was told it was all clear immediately.  The oncologist therefore put it down to the antibiotics i had been taking as part of my treatment. I was on antibiotics every day of my treatment which i wasn't keen on with taking the capacitabene as well. The levels stayed high for a couple of months and back to normal by my 6 month check up.

    So I am thinking this may be the case for you with you taking antibiotics so try not to worry - hard I know!

    Hope your appointment goes well on Thursday and best wishes for a speedy recovery.

    Carole x

  • Kate

    I can't offer a great deal of help other than to say that as I had metastatic spread to the lungs I was treated first for six months with Paclitaxol/Carboplatin and had the second appointment cancelled as my liver levels went haywire - sorry, I didn't ask about the detail.  But they reduced my dose by 25% for the rest of the treatment and I tolerated this very well.  But other than that I don't have much value to add other than to say I hope you get more help and can find out as much as you can at your next appointment.

    Worry is awful, I hope that you get all your fears allayed at your appointment.  I am thinking of you.

    Irene xx

  • Hi  

    I don’t have the same cancer (mine was cervical) and don’t have liver metastasis, but your liver results caught my eye. I became unwell earlier this year and feared my cancer had recurred and spread.

    I had blood tests and my bilirubin was 65, my ALT was 236 and my ALP (which should be between 44 and 147) was 1292.

    A CT scan showed that a very large gallstone had moved and blocked my bile duct, and this is what was making me ill and sending my results haywire.

    I have known since an incidental finding on a scan when my cancer was diagnosed 5 years ago that I had gallstones, but treating my cancer was the priority and they gave me no issues till this year.

    I just wanted to say that crazy liver results don’t always mean metastasis. I’ve had major surgery in the form of a pelvic exenteration when my cancer did recur more than 3 years ago and this year had a procedure to unblock my bile duct. Last month I had successful keyhole surgery to remove my gallbladder and all has gone well.

    I hope there’s a more straightforward explanation for your results than a liver met-just wanted to say that my fears about that turned out to be unfounded and I hope it’s the same for you. There can be other reasons for these high results.

    Sarah xx


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  • Hi  , 

    I was diagnosed T1N0M0 & had my tumour successfully surgically removed but went on to have a course of chemoradiotherapy due to only a 1mm clear margin on a small area which is cut off for further treatment. I was told that the chances of mets from a stage 1 diagnosis are pretty low. My eldest daughter has Gilbert’s Syndrome too! Her bilirubin sits naturally around 28 & it was explained to me that this was nothing to be concerned about as long as it’s monitored regularly considering a newborn baby with jaundice would have a bilirubin count way up in the 100’s. 

    I hope your consultant manages to ease your worries & wishing you the very best of luck for your appointment on Thursday. Keep us updated on how you get on. 

    Nicola 

  • Thanks very much for your message; I spoke to the GP yesterday and the level is down to 100 now, so I'm feeling more relaxed!!

  • Thanks for your message, I'm glad you're on the mend now.  Am feeling much more relaxed thanks to everyone's messages, much appreciated thank you x

  • Update - I saw the consultant today and she couldn't feel anything!  I was so relieved I just burst into tears! 

    She thinks its possibly a combination of chemo and antibiotics that caused the liver stats to go awry, but as they're on the way down, no need to worry.  MRI should be getting booked for the end of Nov, and then the usual 3m follow ups.  I feel slightly scared that the follow ups are so frequent, but also relieved that they are!  I know this is just the standard protocol.

    I asked about the LVSI but she said my tumour was caught early, and that is partly why I had the full CRT - the same treatment as someone with a much larger tumour, so they've done everything they can.

    Will be trying to book a holiday now!!

    Thanks to everyone for your support, this really is a brilliant group xx

  • That is wonderful news!  Chemo unfortunately can play havoc with liver levels but many other things can too.  Having a cancer diagnosis, no matter how early, does things to your head, and walking a tightrope becomes a way of life.  Three month check-ups are good, nerve-wracking, yes, but it means that they are keeping a very close eye on you.

    Go and have a lovely holiday! 

    Irene xx