Metastatic Bowel Cancer Treatment Advice - any Oncologists here or fellow patients

[Magicpaintbrush]

My DH is 46 and has a diagnosis of terminal bowel cancer (Metastatic adenocarcinoma of the rectosigmoid). Cancer is present in his bowel, liver and both lungs, and (as of a couple of months ago) one of his lymph nodes. He is almost 20 months on from diagnosis / 18 months since treatment started, with an initial prediction of 2-3 years to live, and we are now coming up to year 2.

Ever since diagnosis we have been told that surgery is not an option for him - initially they said because the tumour in his bowel was too big, but even after chemo, when it had shrunk right down, they still said no to surgery. He has never been offered the opportunity to see a liver specialist, which according to the Bowel Cancer UK website he should have been (something I only discovered last week). His primary tumour has now grown back so much it blocked his bowel so he has a stoma.

I've asked his Oncologist multiple times about surgery, from the beginning, and been told it's not an option, but I don't understand why.

Can someone explain to me why he couldn't have surgery. Why can't they remove the tumours - or least, when they had all shrunk to their smallest size thanks to chemo, at that point why couldn't they have been removed? At one point the bowel tumour shrank down so far it was barely there, why couldn't that section of bowel then be removed? Because it has since grown all the way back.

I realise the tumours in his lungs present an added difficulty but they have always been tiny. If the other tumours had been removed would that have lessened the chance of it spreading to his lymph nodes?

And if he had surgery could he have been a candidate for the Personalised Cancer Vaccine trials which are happening at the moment to stop the tumours coming back?

He has been on Irinotecan and Cetuximab, then Folfox, and then Lonsurf - the Lonsurf has made him so ill he's had to stop taking it, leaving him with few options now.

Is there anything, anything at all that can possibly be done at this point? Because I keep reading and hearing about people having different outcomes according to the medical professionals they get, and that outcomes are different as a result. Should we ask for a second opinion, and if so where should we go? Or is it too late? We trust implicitly in the wisdom of the Oncologist we are given, but should we? I don't know.

If anyone can advise, please please take a moment to reply. Thank you so much.

Im so sorry for your husbands situation.
I lost my husband to a very similar diagnosis at the same age as yours.
I met many others in this situation ,metastatic inoperable disease and the prognosis is poor.
I would suggest you ask for a second surgical opinion from a liver surgeon who is an expert in metastatic bowel cancer eg: Merv Rees.
I did meet people with similar diagnosis who werent operable who went on to become operable after chemo and or chemo radiation. Some did really well.
Good luck.

Thank you so much for your reply, I appreciate it so much. I didn't know there were liver surgeons specialising in metastatic colorectal cancer, I am now busy looking in to it, thank you. My worry is that it might be too late, or referral waiting times might be really long. But we have to try. Thank you again.

Im so sorry for what youre both facing. Surgery (or targeted radiotherapy) is only performed for metastatic lesions in the liver or lungs if there is only 1 or 2 discreet lesions which can be fully removed (by surgery) or fully treated (by radiotherapy) Your dh's disease sounds very advanced with numerous areas involved, if surgery cannot fully remove them then it shouldn't be performed. Systemic treatment with chemotherapy or immunotherapy is preferred in this situation as it treats the whole body.

I am wishing you all the very best, I hope he can be offered a different line of systemic therapy. Such a very difficult diagnosis at such a young age 🩷

Where do you live in the uk? I would recommend doing some research on HIPEC surgery. I have a thread on here from a few years ago. My husband sadly passed away 2 years ago from the same cancer but he had HIPEC surgery with a phenomenal team at Good Hope hospital with Mr Youssef. We were originally told he only had 6 months to live (he was 38 at the time), we got 4 amazing ‘well’ years. Feel free to message me. I’m so sorry you find yourself going through this also.

My husband had multiple lesions removed from his liver in a 2 stage liver resection (portal vein embolisation followed by liver resection) he was at first considered inoperable ,then later after chemo became operable . i believe it depends on the position as well as number and size of lesions and how much healthy liver is left. First surgeon said no,second opinion said yes. He recovered well and then had chemo radiation to the bowel tumour which then also became operable,He had 6 yrs of good life after surgery when his prognosis was months before the liver was operable. In these desparate situations that are often unique more than one opinion is useful as you need to feel you have tried everything.

Thank you all for your advice. I think perhaps his window of opportunity for surgery when the tumours were at their smallest has passed, but I think we will still attempt a second opinion if we can, if he feels he can face doing that at this point.

The thought of living the rest of my life without him there is unbearable. Our daughter turned 17 yesterday, she is at that point in life where she is studying for A-levels, looking at Universities and about to start driving lessons, it's already a lot to think about but to lose her dad in the midst of it all would be a catastrophe. I don't even know where to begin with coping with the pain of that loss. I am so very sorry that so many of you have lost your husbands to this cruel disease. So sorry.

I do have faith that one day science will find the answers we are all hoping for. That time can't come soon enough.

A second opinion wont hurt. I can’t tell you that everything will be ok but I can tell you kids are sooo resilient, my eldest went to uni, graduated with a first and did her PGCE all whilst dh was ill, my ds did his A-levels (straight A’s & 9’s) and started uni and my youngest was doing GCSE’s (also A’s & 9’s) they all drive (well the youngest has a motorbike!). They are doing ok thankfully. We fully utilised the counselling at the hospice which helped a great deal.

Me well that’s a different story…..

My heart goes out to you and your family ,so many of us know something of what you may be going through and our thoughts are with you.
Feeling that you have done everything you can (if your husband wishes) is important for many people.
You are living through anticipatory grief whilst fighting to do your absolute best for your husband ,your daughter and yourself.
I remember feeling exactly as you regarding my son and daughter as you do now about your daughter. My son deferred uni for a year and spent the last year of my husbands life at home and i think that helped him later on.
My daughter took a job close to home at this time too.
It is unbearable but somehow you bear it even though it still difficult for us all at times.
My husband said :the only thing that could possibly make this situation any easier/better is if you and the kids promise me if im gone you will try to make the best of your lives and find joy.
We all try and sometimes (years later) we suceed,not always though.
I agree re science will find answers one day and sincerely hope others are saved,my husband loved it went people dified the odds. I'll be hoping for the best possible outcome for your husband.
Best wishes and virtual hugs

Thank you so much to everybody who has replied. It is reassuring to hear that the children/young adults who have lost their dads have been resilient and found a way through, even if they have had to adjust plans and take some time before going to uni etc. Sadly my cousins were the same age as my dd when they lost their dad, my uncle, to cancer caused by exposure to asbestos, but 10 years on, although they miss their dad, they are both thriving and doing well, new jobs, getting married etc, which is reassuring.

What a different world this would be if cancer had never existed. Something we can only dream about.