Bowel Cancer/liver metastases HELP !

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Hi Everyone 

First time posting this and looking for some guidance or assistance

I am 36 years old male and diagnosed with bowel cancer July 2020 with Liver Metastasis stage 4

I have had a bowel resection and lymph nodes removed, i was then put on chemotherapy 

The chemotherapy FOLFOX didn’t work for me and I went from 1 tumor to 8 on the liver in the space of 3 months. 

Changed chemotherapy drug to Irinotecan and panitumumab and dramatically reduced tumors down in size so that I could have surgery on the liver. 

I had a liver resection to remove the tumors and 1 lymph node on the 21st June 2021 there was one lymph node left in with cancer as they couldn’t take it out due to it being too dangerous and complicated.

During recovery from the operation I had a blood test to see how my tumor markers were doing aswell as my liver function this took place on the 29th July and everything was normal as well as my CEA results at 1.5 

The plan was to get referred for target radiotherapy asap for the last lymph node. The referral took 6 weeks 

To start the referral that hospital insisted that I have a new PET scan even though I had a pet scan the week before my surgery 

The results have come back this week and I have been told that there are 6 more spots in the liver and spread to lymph nodes at the back of my tummy. 

The oncologist was very sincere and disappointed in the results, he informed me that the liver surgeon has said no to doing another resection they also said no to carrying on with panitumumab that has been the best drug to shrink the previous tumors but because it cost the nhs too much money they won’t give it to me again this also means no to radiotherapy and no to any further operations.

He also said that there is what looks like scar tissue on my right lower side and this could be from the operation but as your cancer has spread it’s likely to be a tumor even though I said well the drainage hole reopened at home and this could be the issue. 

I was then advised that it’s incurable and that if I don’t take chemo I have possibly 6 months to live or with chemo maybe a year or 2 

I even explained how well I am now and feel so much better but that was not taken in consideration 

The oncologist attitude was like he had given up on me and just given me drugs to manage the symptoms or prolong life which is really sad. When I mentioned about going private then ears pricked up and he was very enthusiastic over it all 

it’s now going to take 3 weeks to go back onto chemotherapy and god knows what more damage is going to be done 

Myself and family feel completely numb with the news and in limbo of what to do in terms of next stages 

1. Do I pay for 2nd opinion 

2. Do I challenge the oncologist on the panitumumab

3. Do I go private instead of nhs 

4. Do I look at a private clinic named ‘ Care Oncology Clinic‘ in London 

Not really sure what to do next

Gareth x 

  • Hi Gareth and a very warm welcome to the online community

    I'm sorry to read all that you've been through and having to try and decide what you should do next must be very hard.

    As the online community is divided up into different support groups can I recommend that you join the bowel cancer group and the secondary liver cancer group which are both great places to ask questions, share experiences and get support.

    If you'd like to do this just click on the links I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'. To save you typing this all out again just copy and paste it into your new posts.

    It would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Defo go private. NHS can 9nly offer so much and in this day and age its sickening they say no to treatment because of the cost.this is your life . wishing you strength and love xx

  • Hello Gareth

    I have come across your message whilst looking for help with a very similar situation for my husband.  Although we are not at the operating on the liver stage yet because the surgeon still wants further shrinkage.  

    My husband was misdiagnosed originally by his GP which just adds to the frustration when you feel they are giving up.  He had to have part of his bowel removed in an emergency operation and now has a colostomy bag.

    He too had cancer in some lymph nodes and now 10 cancer deposits in his liver.

    I have phoned the Marsden today as their website indicates they arrange 2nd opinions on your behalf.  I just wasn't getting anywhere asking my oncologist or GP for a referral.  To pay for a 2nd opinion doesn't seem too expensive but as yet they are still gathering the records and images to review.  So I guess it will all be relative as to what the outcome might be.

    I know it has been a while since your posting but I hope all is well with you.  I wondered if you had an update as it really is great of you to share.

    Thank you

    Joanne