So I wrote on here last week regarding further investigations required. After having Curative surgery September last year for bowel cancer it looks like the cancer has spread to my boyfriends liver. We met with our consultant yesterday and he’s 80% sure it has, although he hasn’t had results of pet scan and mri scan to complete the jigsaw. He’s referring us to oncologist and suggests chemo. We are seeing the consultant again tomorrow morning where he says he will be able to clearer.
We are absolutely devastated and are thinking all sorts. Why has this happened again. He’s only 43 it’s all too much. His last ct scan in Jan was clear. He had his bloods taken a couple of weeks ago and one of his tumour markings was higher than it should be but they said this can happen for many reasons and isn’t always reliable. What’s the point in that test then. We have so many questions and so many fears. We just want someone to tell us it will all be ok.
Hi ,
I am so sorry to hear your boyfriend has to endure more chemo . It is devastating to hear that the cancer has move to another organ and I am deeply sorry that you are both having to go through this situation .
The Tumour markers are only indicators as unfortunately other things can cause them to rise like inflammation. My mum’s went up for six months and came back down without any Mets showing . They are no longer reliable for her now . If markers continue to show an upward trend or jump quickly this can indicate disease progression but small rises are not so reliable . My mum’s markers only show a small rise when her cancer has spread .
At diagnosis my mum had a significant spread to her liver . It was like a fruit bowl of tumours. Chemo had a substantial job to do but after six cycles the scan showed that they had disappeared. There are centres of excellence for the liver where highly trained surgeons are able to resect large sections . My mum had 73% of hers removed . She had a bit of a recovery to go through but they did a fantastic job and she has lived a good life for eight years .
Your oncologist will fill you in with the details of where in the liver the cancer has spread to . My mum had a spread from segment 4 to 8 .
There is also other treatments from radiotherapy that can be very effective in the liver . There is also a criteria but it’s good to know they exist .
My mum was inoperable at the beginning but chemo did a powerful job . The Multi Disciplinary Team review quietly in the background even although it feels as though they have gone silent . Some people who have tumours in a difficult location have maintenance chemo and continue to work and treatment becomes part of their life . Bowel cancer has many chemo combinations . That’s before we get to Immuotherapy . It would be helpful to ask if he is MSS or MSI as some Immuotherapy is also starting to work for some subgroups of patient’s .
My mum will always be under the care of an oncologist I would imagine . Every six months she has had a scan . Once it went up to a year . But they take extremely good care of her . In between life goes on pretty much as normal. Her oncologist likes to keep scanning her so they can get in quickly to treat any disease . So far it’s been a good plan . If you click on my username you can read her full story .
So there are many , many options to treat a spread . It is far from over and is not a situation without hope . My mum is into her tenth year this summer !! However they will also give you worse case scenarios and before you go in you might like to think if this is something he wants to hear . My mum stated that her individual prognosis was an unknown and stats held little value to her . She declined .
My mum leads a good life despite a difficult diagnosis. I wish the same for your boyfriend . Take it one day at a time . One step at a time . Keep your mind where your body is and bring it back from imagining the worst outcome . We all do it but gradually it gets a bit easier and you realise there is a subgroup if patients doing very well indeed . We continue to hope that the new treatments coming through pushes back the boundaries .
He commences more treatment and that is very hard for him but he is young and my mum’s surgeons first liver resection was doing well twenty years later . My mum was an older at 67 when she was diagnosed and 69 at the upper end of the spectrum for liver resections when she had her big liver op. She kept herself fit and endured it . At 73 she had a small lung resection and was hitting the coffee shops two weeks later . He has youth on his side .
So in my mum’s words he will find his focus and put his best foot forward.
We are here for you every step of the way .
take special care .
Court
Helpline Number 0808 808 0000
Thank you so much court for replying, I know you are very knowledgeable about this so was hoping to get a reply from you.
Dreading tomorrow’s appointment. My boyfriend never got the opportunity for chemo after his original surgery due to complications with infections causing sepsis so unfortunate passed the 12 week window. And this is why we were worried because we knew at some point it could show it’s unfly face again.
I hope we get something positive tomorrow. Please will you keep an eye out for my posts as I always really appreciate your input as I feel absolutely clueless and I google to find out as much as I can about things that just lead to devastation as such horror stories.
Take care and a lot of respect to your family and your mother for fighting so courageously x
Also court I just had a quick look on the internet to see what mms and msi meant. I know that his tumour was sent to addenbrookes hospital for various tests and lynch syndrome was not involved. But Our colorectal specialist advises that our two sons have a colonoscopy at 32 years of age (10 years prior to the age their dad was when diagnosed)
Of course I will look out for your posts . I know just how unsettling the news is and it takes time for you as a family to process it .
If you are going to google type in “Stage 4 success stories for colorectal cancer” that’s what got me over the initial stages . If you just type in stage 4 you get information from way back and it took me a little while to notice the dates !
Getting straight to chemo is a good plan as it gets straight to work not just shrinking the existing tumours but reigning in any stray cells . Don’t be too alarmed at the size of liver Mets . One of my mum’s was 5 cm . With the rate of cell division and the mechanisms of chemo they can shrink quite a bit .
Hopefully they will go into the tumour type as the information becomes available. I am glad your boys are being screened . It’s great to know they are being thorough .
I hope tomorrow goes ok .
take care ,
Court
Helpline Number 0808 808 0000
Morning. Been to see our consultant who now had all results back. He confirmed the spread to the liver. Said there are 3 or 4 Mets, very small, about 15mm. Next step is MDT meeting again Friday and hopefully will get appointment with new oncologist for next week. Been reassured that the oncologist is very good and is a liver oncologist. Fingers crossed we are in with a good chance from here onwards. They will carry on with his surveillance program as normal. Don’t know much more than that for now. We can only hope that the oncologist Knows best how to deal with this as our lives are now in his hands.
Great to hear from you . This is the benefit of a good scanning programme in action , caught early and nipped in the bud . Obviously I am no doctor but from listening to the surgeons that sounds as though he has various options going forward . Tell your boyfriend my mum has had over ten Mets and Much bigger and sent them packing .
Now for the eviction notice as our Strongsami likes to say .
I know this is tough for you all but he has a good plan in place and by the sounds of it a good team around him . The good thing about the liver is it regenerates after surgery . I am sure they give the junior radiologists my mum’s scans to review to give them a fright . It regenerates but it really is an odd shape !!
Being vigilant and quick intervention has undoubtedly been the game changer for my mum .Hard as it is to face .
You can breath a bit easier for a few days .
Take care ,
Court
Helpline Number 0808 808 0000
Thanks court. Obviously we know this is still serious but we feel a bit more hopeful than we did on Monday. Our consultant could only answer so many questions as his expertise is bowel so will be interesting to hear what the liver specialists view is following the MDT meeting. I am still dreading meeting with the oncologist as I know from past experience that they are very matter of fact and doom and gloom but as long as he comes up with the best plan possible to fight it we will. My boyfriend spoke to our gp on the phone this morning regarding full blood count test taken on Monday and he was amazed when we told him the latest as he said the bloods came back very good, as in crp, liver function etc, so liver is functioning healthily so these Mets can’t be causing much stress on the liver, strange. I don’t know, so many questions.
Take care x
You actually sound really well prepared and realistic about the oncologist meeting . My mum’s first oncologist was blunt to the point of dismantling but her current one is nothing short of incredible and we completely trust her judgement.
My mum’s liver function was also great and that is such a strong position to start chemo with . He has a small tumour Burden . Chemo did knock it off a bit and despite two liver resections it’s still function well . He is general health has not been compromised and he will get through chemo and settle into a routine with it .
Heres to significant shrinkage .
Have a look at Radio Feequency Ablation. It’s comforting to know there are options and then surgery is also great .
take care,
Court
Helpline Number 0808 808 0000
Been to met our oncologist today. Amazing man, we have 100% confidence in him. And on our level too which always makes it easier to talk to them.
He said the Mets on the liver are very tiny. My boyfriend is to have 8 weeks worth of chemo via a PICC line. He will have inrinotecan with 5FU and folinic acid. He said as the Mets are so small this treatment could possibly make them completely disappear, which would make him a happy man and would need to further treatment or they could stay the same, as long as they don’t get bigger. So sounds like one step at a time. Once the 8 weeks of treatment is over he will scan to see. He is talking with the liver specialists to keep them in the loop of things. We will see him in 4 weeks time so he can see how my boyfriend is feeling with the treatment.
We remain positive and will fight knowing we have an excellent team around us.
Hi ,
So pleased the meeting went well . From what you said I thought it was going to be a small tumour load and it sounds as though it’s all entirely treatable.
Having an oncologist you trust is such a weight of your mind . He has this under control allowing you to concentrate on helping your boyfriend through chemo .
You can really relax for a night or two .
take care,
Court
Helpline Number 0808 808 0000
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