Stage 4 bowel cancer

Lovemybf

Now it’s in the liver and lungs !!!

My fiancé was diagnosed 2 years ago with rectal cancer with Mets to the liver - stage 4. He had every warning sign so we were disappointed he wasn’t checked properly when the symptoms started.
He had 5 liver met and so started folfox which resulted in what we though was a successful resection of all cancer. Cea dropped from 22 to 0.5-0.9

18 months later cea is still 0.9 and he has been given a palative care only diagnosis with 2 mets to the liver and 5 across both lungs.
why is this happening??

My world is falling a part as we are in our 30s ands there were no warning signs!!!
Through out the 18 months Cea has bounced between 0.5-0.9 even though it was a reliable marker in the past

I can’t find anything to suggest Cea doesn’t rise with a reccurance and can’t see how he is so symptomless.

I feel like this cancer will kill me before him. :(
Any suggestions on what to do?

Any one had treatment other then chemo with multiple lung and liver Mets?

Polly68

Hi @Lovemybf , when you say all cancer removed, does that include a liver resection? As you will see on my profile, after 2 years Im still undergoing treatment for mets that keep popping up and am currently hoping that chemo will mean I can have a liver resection and then lung op. I looked into RFA and had I not been offered surgery would have gone down this route - if mets are less than 5 and below 3 cm this can be considered for the lung but not sure of liver criteria. My CEA had always been below 1 until I developed the liver mets, the lung mets didn't change it at all, and it is known that's it's not a good guide for everyone. The BBC booklet has a section about possible alternative treatments for mets and might be worth a look. :x::x::x::x:

Lovemybf

Hi @Polly68
Yes he has a liver resection and the liver was clear for 1.5 years.
Now it’s suddenly gone crazy. Two Mets one in segment 8 41mm and 7 1.4mm

In the lungs there are at least 5 Mets all less then 9mm
3 in left lung 2 Lower and 1 mid
Right lung 1 Lower and 1 mid and MAYBE another few <5mm .

I think the liver might be operable as the oncologists has said it’s the lungs which make it palliative.

CEA has been so misleading. As it did not rise like it has done before.

I literally don’t know how to continue fighting for him. 😭

My questions- has anymore has treatment for multiple lung Mets on both lungs and been offered a liver resection?

Any ideas for places to get second opinions.

charleyb

@Lovemybf i am so very sorry to read your update, cancer is so horrible and blimin unpredictable. My hubby is currently cancer free, after a successful resection of a lung met, but we know he is high risk for it to come back at some point. In the case of a second opinion we went to The Royal Marsden, and have had brilliant care, i`m not sure where you are based but there are lots of excellent centres that will give second opinions. What chemo has he been offered? Is he able to have the targetted therapies like cetuximab as this worked really well for my husband.
Big hugs to both of you and hopefully someone with similar experience will be along to offer some advice :x::x::x:

Polly68

@Lovemybf I have been classed as multiple mets to lungs, originally 2 in lower left lung and 3 in right lung ( 1 upper and 2 lower ), all tumours @2cm. The left was operated first as one tumour was growing very close to a main vein - the surgeon removed the tumours individually then lasered the edges. He was planning the same for the right lung but then the liver popped up. I have liver mets in lobes 2, 6 and 8, all @3cm. The surgeon has said I'm operable but wants the lungs more controlled first. I guess they look at the position of the tumours, size and whether lymphs are involved. I'm hoping all my surgeries are able to go ahead but no one knows at the mo. I'm also on second line chemo so need it to work for me. I'm not sure I've answered your questions but am sure others will come along with more experience to answer your questions better. I had lung second opinion at Guys with Dr Bille and liver at Kings with Dr Patel. :x::x::x:

Lovemybf

@Polly68 can I ask...... did your team tell you why are potentially suitable for surgery?
I really just want someone to give us a chance. Do you think we should wait to see how far chemo can change things?
I literally feel like I am going crazy.

Thanks @Polly68 hope everything goes well for you 👍🏽

GD62

Sorry to read about your partners recent mets @Lovemybf . CEAs are never definitive clinically and should be seen or used in context of using scan results which themselves ha e varying problems with sensitivity and specificity . Please take care. Positive healing and hugs🙏💋

Gill

Gosh.... I'd love a CEA that low. Mine is currently 552. Had got it down to 45, but it's beeen creeping up for the last few months. Mind you it started at 6717 before I got on to FOLFIRI. Now on FOLFOX, but it's causing concerns with my neutrophils 0.8 and white blood count. Still saying no surgery to either my liver mets or the nodules in my lungs or the bowel tumour. They did radioterrorise a bone met on my scalp. Have had a disappointing review from Leeds who agreed with my oncologist and couldn't offer anything - not even ablation. Getting so disheartened. Has anyone had a liver transplant?? (Or is it a case of they wouldn't waste a healthy liver on me?). It's the liver mets that'll get me first!

Polly68

@Lovemybf I think they always give worst case scenario first, so that they have something to work back from. I was told by my CRC nurse that in most cases they give chemo first before a firm decision is made as to what other treatments can then become available - the response to chemo is important. There are many people on here who in the beginning are told no surgery options, but after chemo become operable. In my case I was told I was operable straight away, I wasn't told why, but can only think the mets are in an accessible position and not too close to any important veins etc. You could ask for a second opinion, just for peace of mind that surgery is definitely not an option. I don't have any lymph involvement atm, and I do know that my lung surgeon would not have operated if there had been. It's all so tough, and so much wait and see what happens, I totally understand how frustrated and demoralised you must be feeling. Keep strong :x::x::x::x::x: