4 weeks after successful bowel resection, but now the bombshell of secondary liver tumours.....

Welcome

Glad you reached out to us . Always great to get the primary rumour removed so well done on your surgery and recovery . It’s always dismantling and very disappointing to hear that it has moved to another organ for sure but you are correct in that it can sustain quite a bit of surgery and it sounds as though you are being spoken off in operable terms . They are not inclined to do that unless they are reasonably confident. My mum was totally inoperable with a substantial spread to her liver so went straight to chemo . She was a symptomatic as she was picked up on a bowel screen . I think you will find the chemo you have will be very similar if not the same to the chemo you would have had post op anyway so that aspect is still on course . My mum had six rounds and had a great response. You can read her full story by clicking on my user name . Long story short she went to a centre of clinical excellence and they removed 73% of her liver . No post op chemo . With time she made a good recovery with a very odd shaped liver . Although it regrew it seemed to change shape a little and I am sure gives trainee radiologists quite a shock ! However it functions very well indeed and has done so for the last 11 years . The first few years were the most intense .

In terms of segments of the liver being involved my mum had segments 1 to 3 clear but disease evident in the rest right up to the resection margin . 

Many people use just chemo as a chronic condition to control their disease and can be very successful . Some use Radio Frequency Ablation .immunotherapy is new on the horizon but for some patients in America getting a good response.

It is a shock but this is not a situation without hope . Also by the time you have completed your chemotherapy hopefully the surgical options will be back running smoothly following covid-19 . 

After a few bumps along the way my mum’s liver has remain clear for the last nine years and she has enjoyed many good years . Currently isolating .

Take care and ask whatever you like . It takes time to recover from the news but you will find your feet again and work your way through the information .

The surgeon mentioned he was going to have to be “ creative” with my mum’s liver so I guess it’s true , medicine is both an art and a science .

Court 

Thanks for posting Court

That kind of level of detail on the where and the what in my liver are things I'll need to establish about my state of affairs.

A friend has suggested I look at a company called Oncologica for a private option for targeted treatment, but not sure if that's effectively what the biomarker follow up biopsy testing is basically looking at? The cost is steep (£2.5k) but need to understand if it offers anything beyond what I'm getting on the NHS anyway.

Is there a list of centres of clinical excellence for liver cancer that you're aware of?

Yes. There are seven in the UK . If you do a google search for liver transplant units you will find the one nearest to you . It’s the same surgeons and they are highly skilled . The whole units are set up for liver patients and the nurses are specifically geared to post op care . Once you have done your chemo you can link in with them . Your oncologist will probably refer you on anyway but if not you can ask them to review your scans as a second opinion. It is a worthwhile exercise.

To be honest my mum never required any intervention other than what was available on the the NHS and that was ten years ago and much more limited than now . Some of her mets were 5 cm and after just six cycles they were no Longer visible on the scans . One small dot on a PET scan . If she were going down such a route I don’t think she would have spent that type of money until she had seen if she was responsive to chemo first . Then maybe investigated it . Bowel cancer being one of the larger primary groups is in the fortunate position of having treatment combinations of chemo the oncologist can work with . 

From what you have written it sounds as though they regard you as possibly operable currently although they preferred to send my mum to chemo first as it not only allows possible shrinkage but to tackle any possible microdisease at the same time . It turned out to be a good plan . I have seen  people make reference to the protocol you mentioned but I have never looked into it to see if it’s achieving anything . 

The other aspect you can track is your CEA numbers . They hope to establish a downward trend on chemo although it can spike thereafter due to chemo itself but if the first few go down it gives them a bit of encouragement. 

Take care ,

Court 

Hi Adrian,

I really hope I can be some help during very difficult circumstances.

Similar to you I started off with stage 4 bowel and 6 metastasis in my liver. My journey started off almost 18 months ago up the road from you in Worthing.

I started with 12 twelve fortnightly sessions of chemo, followed by 5 weeks of radiotherapy in Brighton.

Subsequently I had a liver resection April 19, 50% removed in Guilford with professor Karanjia, he was incredible. Within 3 months I had a Low Hartman's resection of my bowel and now have a permanent stoma. 

This Jan I had to have another liver resection as a small tumor had returned, it was probably there all along. My surgeon this time was Dr Riga. She and Prof Karanjia have just been incredible.

I am well and fit and keep on the road and will wait for the next set of scans. 

Just do everything you can to take care of yourself and keep  as well as you can. The main thing I have learnt is that nothing is certain.

Best of luck to you!

Adrian hi, My brother had stage 4 colon cancer which had metastasised to his Liver. He had chemo treatment for more than 6 months (2 weekly cycle) ; 14 sessions in total.

He was told that his liver was inoperable - but my mother got him to refer his results to Profressor Lodge in Leeds. He is a Liver cancer specialist and very very good.
He told my brother that they could operate and he removed 3/4 of his Liver. 

So it is possible.

Good luck

Paula

Thank you, both, for your replies

It does sound as if, even with wider spread than appears to be the case for me at the moment, there are steps that can be taken with the liver that give a decent chance of good quality of life. I take a lot of comfort from the fact the primary tumour has been successfully removed and wasn't an aggressive type - am hoping that's the case with my liver too. I suspect the bowel tumour had been slowly growing there for at least 5 years, and possibly much longer. I have a son who is about to turn 10 and I'm finding it hard to keep a positive outlook on life with the mental battle to manage as well as the shielding situation with coronavirus, especially when each step seems to take an age to progress, until you reach the point of no return in terms of getting a treatment date to work to. My colonoscopy to finding out biopsy results was about 3 weeks, and about the same again before I was laid out for surgery.

The MDT discussion took place yesterday, and the agreed plan for me is 3 months chemo and a joint referral to both oncology and the liver team. I did try and find out more about the current state of my liver, but no more detail has been forthcoming. The liver surgeon at the MDT has reviewed my PET scan and indicated it is operable. Also confirmed that they are still looking to cure me of disease, based on where I'm at presently.

I've asked questions about referral, but the response has indicated those are conversations for me to have with the oncologist once I get an appointment. I looked up the Guildford team mentioned above, and it appears both are still there. The question I have when I meet the oncologist is whether I'm a suitable candidate for a less invasive form of surgery such as RFA, which I don't think Guildford can do.

Hopefully I'll get a letter or call in the next week or so and an indication of when I'll be able to speak to them directly. I'm well aware of the press coverage of the impact of coronavirus on the willingness to start chemo, and the ongoing impact on the backlog of people waiting for treatment to start.

I'm not very good at waiting for things to happen, but just need to accept that these tumours have probably been there a good while as well, so nothing much is going to change overnight in terms of the likelihood of successful treatment. If I don't hear anything in the next few days at least I have a name to chase!

Best wishes to all

Adrian

Hi Adrian again,

One thing that I've found helpful with all of it and the waiting is to try and see it as a spectrum that we move along between total fear and denial. I tried to try and move between the middle of the two poles, difficult but can keep a balance.

Also, I've pasted below Prof Karanjia web site, it might be useful:

http://www.liver.org.uk/professor-nariman-karanjia.php

All the best

Martin

Hello to all

It's been a long time since I originally posted, and it's been a proper rollercoaster in that time which I thought worthy of summarising :) Basically I'm still here, and for the 2nd time am in remission and into 5 year follow up!

After my bowel op in March 2020 I had 3 months of vanilla chemo for bowel cancer (oxaliplatin and capecitabine) before liver resection in September 2020 by the above named Prof K (who I agree is brilliant, along with his supporting team at Guildford).  They took about 25% of my liver on that occasion - 3 little buggers down one end, which involved 2 sections, and 1 large one centred around the blood supply to the liver.  That one was pretty big and the margin was clean, but they would've liked more of it! Nothing quite prepares you for coming round to find you now have a 12" scar under your right rib and up your chest, and that it's only covered with glue!

The team were happy that no further treatment needed at that time, and the histology results confirmed all was good with what they'd taken out, in terms of margin and what it was.

I should probably mention CEA markers - for those reading this with a fresh diagnosis, or unaware, it's a protein marker in the blood that can appear in bowel cancer patients.  It's something usually checked via blood test once cancer diagnosis is confirmed.  Mine was running in the 60s whilst I was having active treatment, which in retrospect should probably have been more of a concern than I thought it was while I was having chemo, but it does have a long tail in terms of dropping off, and if you had it tested 4 times in a day it would probably be different every time. 

When I went into 5 year follow up it was for a CT and blood test every 4 months initially.  I asked for an extra blood test at month 2, at which my CEA was 27.9 ('normal' is under 3.8) so still lower than it was but alarm bells started to go off in my head although nobody was suggesting there was definitely a problem at this point.  The kicker came at month 4 and my first CT scan, when the CEA had gone back up to 47.3......the CT scan suggested a tumour on my lung.....

I should also mention that once I was in follow up I've had to fight and push for scans to be requested for when they should be done. When my 2nd PET scan was eventually done, it showed x2 nasties at the other end of my liver to where the liver team had been already, but nothing going on in my lung!

Given how soon after my liver section this still was, the liver surgical team were keen to not operate too soon, and to manage with chemo to allow for anything else to 'pop up'.  That resulted in probably the toughest 4 months I've experienced, with a picc line installed and much more aggressive chemo treatment by IV, culminating every 2 weeks with trip home with a pump attached for 2 days. The nausea was unreal, although I never once was actually sick! My energy levels were too low for me to work at all, I got acne which meant antibiotics for weeks on end, horrific cracking of skin on my hands and feet, hair loss etc etc. Having that picc line removed gave me such a sense of freedom!

After 6 weeks to recover, I had my 2nd liver resection by Prof K. This time only about 10% was taken from the 2 sites down the opposite end, although 1 was a bugger to get to on the back side of my liver. Had the op on Tuesday pm and by Thurs am they were actively looking to send me home! Ended up being the Friday as my wife and son had gone on holiday in the days before my op and wouldn't be home until Friday!

Surgical recovery has been longer this time, mainly I think just the cumulative nature of the chemo etc, and my brain is still like mush (not great when your job involves writing briefing docs!). But now I'm back in 5 year follow up again, but this time with routine blood tests every 2 months to keep an eye on my CEA.  Since I'm back on that subject, a recent blood test showed a value of 4.7 and on the basis of which I've now had the lovely letter that confirms they believe there's no repeat of disease.

Come December I can 'look forward' to a colonoscopy for the first time since my diagnosis in Feb 2020, yet another CT scan, and blood test.  Fingers and toes crossed that I make it past that 4 month milestone this time!  Although I feel I should be able to relax a bit based on the blood test results, I can't help worrying a bit.  I guess that's the same for everyone that's been in this situation......

I chat to my lovely counsellor from Macmillan every few weeks - often just about day to day stuff - as a way to talk through my worries and to help me maintain a positive outlook.  I've also had scarworks treatment to loosen up the scar tissue on my epic liver section scar, and looking at holistic options to try and improve my wellbeing. Got a massage booked for Weds and acupuncture in a couple of weeks time.

Onwards and upwards, I hope!

Adrian

Great post . You have had a tough set of circumstances to navigate but you sound as though you are emerging on the other side !

If it’s any consolation I notice my mum’s scars , which were a bit like a patchwork quilt , are not so obvious at all now ! 

It is also really interesting to get your input on the counselling aspect ! I sometimes think we need to flag that up more and coming from experience has great valve !

You will soon be pushing those scan dates wider apart !

Interestingly enough my mum only ever had one colonoscopy!

Take care ,

Court 

Thanks Court

My follow up seems pretty frequent for the first 2 years - CT and blood test every 4 months, with an intermediate blood test every 2 months (the latter at my request, for peace of mind). It then drops to 6 monthly, and finally to annual.

My bowel scar is barely noticeable now (although that may be because it dwarfs into insignificance next to the liver one!). I'm looking forward to a summer holiday by the pool explaining to small people who enquire that I was having a argument with a tiger when I got it ;)

I've had a couple of different counselling periods over the last 18 months - initially through a local charity as I was struggling to adjust to being in remission and all the uncertainty that goes with it.  That morphed into discussing my treatment when I didn't pass Go at my first review point!  My counsellor then was a retired GP so his knowledge was very helpful at managing my fears.

My most recent counselling, which I've had on and off around my last liver surgery in the summer, has just given me someone to talk to who I haven't been literally locked in the house with for much of the last 18 months, and is as affected by it as I am! Talking about how I'm feeling and what I'm struggling with, even if I'm coping well with it on the whole, just gives you some reassurance that you're not a total mental wreck!

Having worked as an road accident investigator in a past life, dealing with things with humour (however dark!) has always been something I can fall back on as a coping mechanism.