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Stage 4 bowel cancer

KarenE

CEA question

Hi, I’m new to the forum but have been reading for a while and feel like I already know many of you. My husband was diagnosed with bowel cancer last March with liver metastasis. I feel like we don’t really have much information from our hospital. Nobody has ever mentioned CEA levels since diagnosis when he was 22.2. Today he had a liver MRI and a follow up appointment with bowel surgeon. He told us today that we need to go to the GP once a year to get CEA blood test done. Our GP was not very helpful in the beginning and has never been in touch to see how my husband is doing. I don’t know what they would make if him turning up for a CEA test. Has anyone else been told they need to do this at their GP’s. Thanks Karen

Ernie 111

Does your husband have his blood tests at hospital or your gp’s I have mine done at the hospital and in my experience they test for loads of stuff including cea as I sometimes ask what level it’s at as well as my potassium and magnesium levels as I have problems with them hope this helps

Buzylizzy

Hi @KarenE. Does your hubby still have mets in his liver? If so I would have thought they'd want to have bloods done more often than yearly. I have mine done every 12 weeks. Sometimes at the hospital but if not I go to my GP and ask for it to be done. My GP is really good though. Perhaps you should find a new GP or ask for a second opinion as it sounds unusual to wait that long. :x::x:

KarenE

Hi @

Quote from @Buzylizzy:
Hi @KarenE. Does your hubby still have mets in his liver? If so I would have thought they'd want to have bloods done more often than yearly. I have mine done every 12 weeks. Sometimes at the hospital but if not I go to my GP and ask for it to be done. My GP is really good though. Perhaps you should find a new GP or ask for a second opinion as it sounds unusual to wait that long.

Hi yes he does still have his mets. Hopefully we will find out on the 8th Feb what they are going to do about them. He has only ever had bloods checked before chemo. He has not had chemo since 3 November because he had pulmonary embolisms so they stopped it.

KarenE

Hi @Earnie 111 We have a clinic to go to for bloods. They take it from his Hickman line. It just seems to Full blood count, liver function, renal and bone. CEA never gets mentioned.

Baxter2

Hi @KarenE and a very warm welcome to the forum. I’m sure you’ll find lots of information, advice if you want it as well as friendship and support here.

On reading your post and profile info, I would have a number of questions which I’d be looking to have answered by your hubbys oncologist. I’d suggest calling the oncologists secretary and requesting a consultation. (These are just off the top of my head and I’m not following any set protocol or advice here but are just some ideas)

It might be a good idea to write them down and make sure you get answers you’re both happy with. Some of the things I was thinking of:

CEA readings - are they being checked? what are they currently? Is there an upward trend?

Pulmonary emboli - why is chemo stopped and why is hubby not having blood thinning injections to treat them and prevent more? Can chemo be restarted if emboli are treated? (especially if it was working?)

Liver mets - Has there been a good response to chemo? Has a referral been made to a liver surgeon for an opinion about possible surgery or other treatment?

Rather than annual CEA bloods at GP’s, can you and hubby see his oncologist regularly to overview his monitoring and care? Eg, fortnightly

Liver mri Scan - what exactly did this show? (You can request a copy of the scan report and correspondence if this is something you would find helpful - some people don’t want this information as it can be pretty upsetting in many cases)

I hope you don’t mind but I’m tagging @Charlotte Nurse Advisor who will hopefully be able to advise you of the best way forward from here.

Sending all my very best wishes,

K????❤️

KarenE

Hi @Baxter thank you so much for your reply. We were told that they do not check CEA but I will clarify that with oncologist. We do have a meeting with him on 12 Feb. My husband is having blood thinning injections. I spoke to McMillen at the time who said my oncologist was being over cautious. He said that the clots were caused by chemo hence the suspension.
We have seen a liver Surgeon at QE in Birmingham but because chemo had worked so well the mets were too small to operate. This is why he had another MRI today. Although we don’t really want them to grow this might be the only way forward.
We go back to see liver surgeon on 8 Feb for MRI results so hopefully will have answers then. I just hope there’s no spread anywhere else after such a long chemo break.

Baxter2

Hi @KarenE

Oh that clarifies a few of the questions I thought of. I’m also on blood thinning injections since Aug 2016 when during a routine CT scan I was found to have a clot in each lung and one in a vessel going into my heart. They caused me no symptoms. My chemo continued as before and my only restriction was that I wasn’t allowed to fly. Apparently having cancer increases the incidence of clots and if on chemo too the risk is even greater. My oncologist has now said he’d rather I continued on the injections indefinitely as long as I’m on chemo (which is indefinitely too) as I’m at further risk of developing them again having had them once. As it happens, the two lung ones remain but are reduced and the heart one wasn’t detected at the last scan. ?

Hopefully you’ll get some answers to your questions on the 8th and 12th and feel confident that everything which can be done is being done to help your hubby. I’d still advise you to compile some questions and write down the answers as these appointments can be pretty tricky emotionally that’s for sure!

Fingers crossed and sending love,

Karen ????❤️

KarenE

Hi. My hubby asked the nurses at the clinic about CEA and they just added it on to his blood test. Today we saw the oncologist they have not done CEA since diagnosis. They just don’t do it. So the results were of the second ever test was negative 2. I’ve never seen anyone say they have a negative CEA before. This must be good news as we went to Liver Clinic on Thursday and his liver mets have disappeared. So just a full ct scan to go. Everyone is amazed because he hasn’t chemo since 3 November due to Pulmonary embolism.

joval

A lot of the time nothing makes sense to us....but we have to put our trust in our consultant s
They do know what they are doing and they are doing their up most for us.