Deflated....liver surgeon recommendations?

Sorry you are in this awful situation Star74. I will tag court as she has a lot of expertise on liver mets. Good luck.

Hi Star74

I am confused for you ! I am also feeling for you and sending you lots of support as you navigate this aspect !

Firstly I want to encourage you . My mum was a full two years into chemo / surgery before she ended up in the capable hands of an experienced surgeon who was able to go further ! So take courage and draw strength . You are still responding well and are chemo responsive . Big tick box going forward !

Having a second lot of chemo whilst disappointing for my mum I believe contributed greatly to her long term treatment options !

However you are clearly articulate and had a firm grasp of a situation that appears to have had the goal posts moved without understanding what clinically has shifted ! I too would find that difficult to process ! So seeking clarity on the situation is also understandable so you can look at your options fully informed and understanding what you are agreeing to and why ! Also to know what avenues are available for you ! Not sure how far you want to spread that old net but given most things are reviewed electronically even if it was purely for a clinical opinion I would be happy to give you my mum’s drs name ! However practically it might be difficult for you to action but may provide clarity . My own opinion is to seek it out with the health board you are being treated to allow full objectivity to occur ! 
Remind me your scans reviewed by one of the regional specialist units for the liver ( same ones that do liver transplants ) ? Sorry if I have asked you before !

Take care ,

Court 

Hi court.  Hope you and family are well.  Yes, bit of a blow today!  The registrar has called back, I have agreed to another 4 week break (already had 4 weeks due to cetuximab reaction) and in the meantime they are referring me to Basingstoke for a second opinion (currently my scans have been reviewed by the liver surgeon in Southampton), my oncologist is going to speak to the radiologist regarding the bowel tumour and they are arranging a PET scan.  Will have a face 2 face in 4 weeks with a view to restarting chemo.

They said they won't operate on the bowel while the liver tumours are present.  

I'm also considering a private consultation with Peter Lodge in Leeds, have heard marvellous things about him.

As you say, I've had a good response to chemo and I feel incredibly lucky.  However,, I was under the impression that surgery would be an option which has kept me going since Dec!

I'm not after a quick fix and am in it for the long haul, not giving up yet! Xx

I hope this is not inappropriate to say Star74 but even in the knocks you display quite a resilience! You quickly address your options and seek out the best pathway for you !

Well done and I hope your skin clears quickly ! 
Hope Basingstoke can give you more insight! 
Let us know how you get on with the private consultation too ! 

Best foot forward as my mum likes to say ! Anytime my mum hit a bump on the road my brain immediately started on researching her options !Then she decided which sat best with her !

Hope you can enjoy your extra few weeks from treatment ? Are your kids back at school soon ?

My mum and family are all good . Lots of contact tracing and corona dodging on the go here ! Packing mum off to the seaside for a few weeks till it settles ! She has already made plans with friends locally and engaged as ever !

Take care ,

Court 

court, My Oncologist keeps saying how well I'm doing after a hard treatment regime,  they underestimate how tough I am!

As long as there is hope, j will keep going. I'm hoping Basingstoke will operate although I've just heard some places have a 52 week waiting list for second referrals?!

Yes, I've just said to my other half I'm going to use the next 4 weeks to exercise and get bits done while I'm feeling normal. 

Boys have one more week off then back to school, although I'm going to miss the little one, he starts preschool!  Going go indulge in some box sets (after exercising)!!

Ah, bet your mum will have a lovely time at the seaside  good idea to get her away, corona dodging!! Xx

Really ! That’s a long delay but still worthwhile finding out what is achievable. Step 1 . Then you will find a solution of that I am sure !

Oh a wee preschooler. I remember putting my last in , enjoying a few weeks to myself then after about a month thought , that’s enough , I want him back !

I do love that stage in their development. Tiring but so wonderful! I hope you have had a good summer with them ! I just tagged on to a football trip last weekend with my big boys . 
Skipped the football myself but enjoyed the chat !

Good on you on the exercise/ recovery time ! Some good researching currently being done on the benefits of exercise during treatment ! Be an interesting read when it’s published but does not have to be extreme , even just a good walk has benefits apparently. Macmillan has a good leaflet . Not sure if you have read it !

Court 

I know court, I'm dreading it, the house will be so quiet!  Ah well, he will love it and it will give me time to get bits done!

You're very lucky that your boys don't mind you tagging along, I have a feeling mine would insist I stay away!!

Yes, my oncologist said there is evidence that exercise is a great benefit.  I used to do a little 20 min home workout so will get back into that,  it's good for the mind too.  I like a walk if I have company!

Going to be hard getting through these next 4 weeks, the waiting is horrible, have to stay busy.xx

Hi Michelle, I have had an almost identical diagnosis as you but have had operations. Last year I was diagnosed with a 7cm Bowel tumour but 3 small tumours in the Liver which were misdiagnosed as cysts. After a course of Radiotherapy on the Bowel the follow up scans showed one of these cysts had grown from 3 to 13 millimetres confirming they must be cancer.

I was started on a 12 course cycle of FOLFIRI and cetaximub but after 6 they decided to break and operate. I needed 6 weeks off the chemo for bloods to recover before they performed my Bowel resection and I now have an ileostomy stoma which will be reversed at a later date. I then had another 6 week break before my liver operation where they cut out the one remaining tumour (the two smaller ones had disappeared) . Unfortunately another tumour (13 millimetres) has grown in the Liver but I have just started my second half of my chemo course and am due into hospital next week for an ablation on this new tumour. The procedure is not affecting my fortnightly chemo cycles at all.

 The main point is that I am being told that my treatment is still very much curative. My oncologist said there is a very defined pathway between the Bowel and liver so it is possible to contain it. Also my Liver surgeon told me he has performed 6 times on one persons liver over the years when needed. I am only having ablation this time as I’ve had two operations in quick succession and they really want to crack on with the chemo. 

I feel you need answers direct from your Oncologist as to why they have come to their decisions, also contact the surgeons from the MDT and highlight my scenario. Unfortunately you do need to put your foot down sometimes to get results. My experience has been very positive with each department but the communication between themselves has been diabolical.  I have been treated at the Royal Marsden so maybe a dedicated cancer hospital makes a difference?
  
I do know some parts of the Liver can be inoperable and your age or general health could also be a factor, I am 54 and reasonably fit.

I sincerely hope you can use my scenario to get some clarification from your team but remember cancer treatment is not an exact science, what works for one may not work for another. If your not happy with their answers then seek a second opinion, you need to know exactly what your options are.

Good luck and let me know if I can help in any other way at all.

Andrew

.  Hi Andrew and thank you so much for your reply.  You are correct, I do need to speak to my Oncologist as I have been left very confused.  She was very keen for me to have liver surgery and so positive from the start, now it feels like the goal posts keep moving.   I explained to the registrar it was a lot to take in because up until this morning I thought I was still on a curative pathway, she just nodded at me!

I have now been referred to Basingstoke for a second opinion and I am also considering approaching Prof Lodge in Leeds for a private consultation. 

My oncologist is looking into radiotherapy for the bowel tumour so I'm hoping she will be jn touch shortly with an update. 

I feel fine with no symptoms   I'm fit and healthy, don't smoke, gave up alcohol in November and have a blueberry and spinach smoothie every morning!  I turned 47 on Monday so I would consider myself the ideal candidate for surgery,  lol!!

Thanks again  I will post an update when I hear more. 

Michelle 

I don’t understand why she would go to radiotherapy on the Bowel, that’s very targeted so what’s happening with your Liver Mets? Mine grew quite quickly when left unchecked and my team are very keen to use an all over treatment so as to hold it in the liver where they feel it’s curative.  More and more questions, it’s such a head-spin and you so need to have faith in what they’re saying.

I’ve changed my diet also, main thing is cutting out the processed foods, cut the sugar out apart from fruit. I do let myself have sugar for the 3 days im on the Chemo as cancer cells get killed by chemo when their growing. I tried vegan for a while but found it too tough if you also cut out sugar, my body needed the fats but I do try and keep them lean. I would love to say Im religious with it but have fallen off the wagon at times, like having a beer when I found out about the new tumour, only 1 and it was the best pint I’ve ever had!!!!

Mental well being I feel is essential, you can’t just say positive things, that’s just making sure every one else thinks your being positive! It’s a discipline I’ve had to learn, plenty of mindfulness really and start the day thinking how can I make this a better one that isn’t dominated by cancer. Obviously some days like pre scan results it’s impossible but I figure everyone has to let those slide.

Andrew