Liver lung mets rectal cancer UK

[Murb123]

Hi

We are based in the UK and rely on the NHS
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 terminal 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 was no warning signs!!!
Through out the 18 months Cea has bounced between 0.5-0.9 even though it was a reliable marker.

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?

Thank you!

[Murb123]

I guess no one can help us

[weisssoccermom]

We're not doctors and they only advice I can give you is to listen to your doctors.

As to why this is happening....no one can answer that. It just is what it is. I realize that it's not comforting to hear that but there is no reason as to why the cancer returned.

There have been LOTS of people on this board who have had recurrences with no rise in CEA. IF the tumor doesn't express the protein that the test is looking for, then a 'normal' test result will be what you get. CEA is not always a good indicator for everyone.

What does the doctor say? Is the doctor willing to do more chemo to see how the tumors react?

I don't know how the health system works in the UK so can't help you with that. Can you get a second opinion? What does your fiancee want to do? Is he willing to have chemo?

[Murb123]

Thanks for the reply.

I am sceptical about the doc in the UK is seems like everything offered is about cost savings, which is why I was wondering what other countries did.

His cea was a marker at diagnosis. But does seem to have not reacted this time.

I would guess his liver is operable it’s seems like his lungs are not ( suggested by the oncolgist)

I’m just curious if anyone out here has liver and multiple lungs Mets and managed to clear it ( even if it’s not forever)

I guess I’m looking for hope.

[SteveNZ]

Hi,
I am so sorry to hear about that.
I cannot help other than feel for you and let you know we care. The medical profession do fight for your fiance as best they can.
Please place aside the 'whys?' love one another and love life to it's fullest.

You are in my prayers.

[stu]

One quick question . Was it the oncologist that suggested he was inoperable regarding his lungs ? If so get to an appointment with a thoracic centre of clinical excellence and an appointment with a radiologist who carries out Radio Frequency Ablation . We are in the Uk too . If we had not asked for a second opinion my mum would have ran out of chemo options years ago .
Some oncologists are not proactive some are .
Also familiarise yourself with the size of tumours in the lungs and see if the meet the criteria for Radio Frequency Ablation .
Not sure who has taken over from Dr Ladas in London . He did laser surgery .
It is a perfectly adequate system in the NHS but you need a strong set of elbows to navigate it .
Find out who was at the MDT meeting when this decision was made . Was a thoracic surgeon present ?
Ask me any questions you like if you think it would help.
Kind regards,
Stu

[NHMike]

CEA isn't necessarily reliable and there are lots of people that have had anxiety over CEA results. Mine was 2.7 at diagnosis, went down to 0.9 after surgery, and climbed to 2.8 after Adjuvant Chemo. So it's been all over the place. It makes for a lot of anxiety for the next lab test.

I would definitely go for a second opinion to see what options there are for the other mets. There have been some amazing stories here and another forum of patients surviving Stage 4 CRC.

[e_enyedy]

CEA results are not 100% foolproof - they reliability varies from person to person. This is what makes medicine an art.
Each living body works different and reacts differently.
In my case, the disease returned after two years, my CEA never going over 0.5.

E

[Murb123]

Thank you for all the replies!!
It has brought me some comfort.

I just wish this wasn’t happening to any of us.
My mental health isnt good and I’ve fallen into utter dispare.
I know i need to be stronger and fight for him- and get more opinions. I need to stop mourning for the life we wanted and be proactive.These replies will hopefully spur me on.

Thanks again and I will keep u updated

[JulesW]

Good evening,
I have also recently learned about spots on my lungs s/p rectal ca surgery. My Cea hasn't risen above 2 in 1.5 years.
I don't know about navigating the uk system ut I'll be researching rfa vs laser vs cryoablation vs traditional vats surgery.
Best

[Murb123]

Thanks JulesW

Was your CEA high at diagnosis ?

I’m just wondering if any one with lung and liver involvement ever got surgery or treatment?

Thanks.

[JulesW]

Hi Murb123,
Looking back on it my cea was actually 3 at diagnosis, dropped quickly to 1 and then was 2 when the mets in lung were found 6/18.
Can you get a 2nd opinion in NHS?
Best,
JulesW

[Rikimaroo]

I just wanted to say I am sorry to hear this. But I do have some questions. Did he change his diet in anyway? Did he exercise and keep active? I quit red meat on first diagnosis back in 12/2016. I also try to keep active but not so much since I am going through chemo right now so its tough.

It's hard to guess why people get recurrence or cancer in the first place but major factor for Colon Cancer is what we eat from studies. If he has not changed his lifestyle since getting diagnosed, it might be time to do that now and fight still.

[Murb123]

Hi

@julesw my fiancé’s cea was as high as 27 at diagnosis. Which is why it threw me when he had a recurrence and cea was only 0.9.

@rikimaroo he has always been fairly active. He is a DIY enthusiast- but chemo has always knocked knocks out all his energy.

I’m just so upset that any of this happen. We were once so happy. We just wanted to lead a normal life.

I’m gonna try for a second opinion but with lungs and liver inevitably it’s gonna be a no!

[JulesW]

Hi Murb123,
My Cea was 3 at diagnosis, now 2 1.5 years later with lung mets.
On Folfiri+ Avastin with f/u scan 8/18 and 2nd opinion at Md Anderson when I get results back.
Lung mets are currently considered inoperable but I'm looking into laser lung surgery in UK or Germany.
-JulesW