CEA going upwards. Oncologist recommends Chemo

[Mulomulo]

Hi guys,

I am close to 11 months post ivor lewis. After my surgery my CEA was 2.5. It has gradually crept up and recently from April to June, it has moved up from 5 to 9 to 17 to 22 to 24.

My pet scan shows that my lymph node is lighted up. In December, a biosi was done and it was determined that the lymph node was cancer free.(Benign). An Fine Needle Aspiration was done.

My oncologist requested for another FNA to be done, in June 3 weeks ago but the surgeon didnt wasn't to do it as it was high risk and very close to the AORTA. (big vein that's close to the heart). The surgeon looked at the lymph node and said that there are no changes and it looks normal.

I did a Pet scan today and it seems to be the same as my last pet scan. (Still lit up Lymph node)

What should i do? Assuming that the lymph node is normal, what should i do? Is it common practice to administer chemo for markers that are going up?

I dont want to do chemo again.

[brucemillar]

I have the same as you have written. One enlarged node next to my Aorta (close to the pull up) which is "inoperable" due to the risks.

PET scans are clear as is Ultrasonic Endoscopy. I have no other symptoms and have opted with my surgeons and Oncologist to leave alone and scan in six months.

I did not tolerate my post op chemo so will not tolerate any further chemo. I feel good and before my op, I was sick and knew I was ill. I am working on the basis that, if I feel good? I am good.

[Mulomulo in reply to brucemillar]

Hi Bruce I will update you what my surgeon says when I meet him this Monday. In 2 days time. Can I ask what is your cea marker now and how long have you had this condition post ivor lewis.

[brucemillar in reply to Mulomulo]

Hi

I have no idea about my CEA marker score. Sorry. I stopped worrying after two false alarms. One of which I was told I was off to Palliative Care. A further PET scan and Ultrasonic Endoscopy revealed no recurrence - Phew. I have a single lymph node that appears to grow (not much) then shrink. It is next to my aorta (or the pull up) so would be inoperable.

I am eighteen months post op - transachial oesophagectomy and one year since my last chemo. I feel good and look good. My surgeon (James Gossage) tells me that people who feel good and look good, usually are good. Maybe not to scientific, but so far it has proved more reliable than CT scans ;ˆ)

When I got ill. I felt ill for over a year and I actually looked ill. My GP, sadly did not subscribe to the big book of Oesophageal Cancer and continued to pump me full of ever increasing amounts of PPI's. Things came to head when I started pass blood in my stools and I insisted on being seen privately. My GP still convinced that I was fine, charged me £10 to write a referral letter.

I was diagnosed almost on the spot. Simply be recounting my symptoms - food sticking, chest pain, bleeding, loss of appetite.

The 1st CT scan almost missed the tumour (well the people who read it did). The Consultant who diagnosed me, insisted on doing an endoscopy himself and found the tumour that he was convinced he would. A review of the CT scan showed it hiding in the section between my oesohpagus and stomach.

I owe him and my surgeon everything. Their dedication and commitment saved my life.

I hope that this helps.

Good luck.

Bruce

[Hidden]

I suppose that the Fine Needle Aspiration proposition being close to the aorta is the issue that is preventing the oncologist's recommendation from being followed through. Have you actually discussed with the surgeon the risk involved? Feasibly, there may be another surgeon who might be more experienced at doing these procedures who might take a different view, and it might therefore be worth a second opinion?

The other aspect is the interpretation of the reading and what this means in practice at this stage. Is it an indication that cancer might be recurring? Or not? Or not yet? It is possible that the surgeon is being realistic in not chasing every odd reading that goes up if that means a risky procedure to deal with something that might not be so much of a problem (or a solution) in the first place. On the other hand if there is something that can be done to deal with things at this stage, it would be worth considering.

I do not know enough about marker readings to be able to give any opinion, but it might be worth having a longer discussion about exactly what this means. Having gone through the Ivor Lewis you want to be free of further big procedures, but you do not want to feel that it has not completely succeeded in sorting out the cancer. If there is something that can be done to address this readings issue, it would be worth exploring the situation about treatment and what might be available. I imagine that you really need to know where you stand in terms of a prognosis?

[Mulomulo in reply to Hidden]

You are spot on. I am meeting with a thorax surgeon next week to see what he says. Please wish me luck. Thanks

[Mulomulo in reply to Hidden]

Hi OPA,

Sad to say today i did my scope and they found out my esophagus to be malignant. (In the upper area). That means my surgeon i guess didnt do a good job removing enough of my esophagus.

My option now as i haven't met any docs yet is to do this.

1) Still carry on with Nivoluhab. This is an immunotherapy drug as i am on clinical trials now. I have about 3 cycles more ending in 6 weeks. Check results.

2) If bad, then do radiation on the esophagus and stomach with continued dilation.

3) Once I get a surgeon confirmed, i want to completely remove my stomach and esophagus and get my colon upwards.

I really need some advise on people who have done complete removal. Do you know of anyone on this site? I am 42 years old.

[gutlesswonder]

Your carcinoembryonic antigen is very high and, crucially, rising fast.

I (unqualified) think you would be well advised to heed your oncologist's advice.

The short term unpleasantness is infinitely preferable to the alternative.

Do you have family members to support you at this difficult time?

[Mulomulo in reply to gutlesswonder]

I have spoken to my oncologist who has told me to do chemotherapy. But before I start as mentioned I had a lighted lymph node. A thorax surgeon has told me to go to the states to get rid of it using proton beam radiation. I am trying to see that as an alternative. I don't know if the cea is going up because of that or mets in my body. Surgeon says that don't do Chemo because scans are clear.

[gutlesswonder]

Here is the latest news about Proton Beam therapy in the UK.

I visited the construction site of the UCLH facility one month ago.

uclh.nhs.uk/News/Pages/Staf...

[gutlesswonder]

Mulomulo

Here are alternative treatment centres.

Presumably the European facilities are available under reciprocal EU/NHS arrangements? Hurry to beat Brexit!

Sorry -- this URL seems to have got lost :

proton-therapy-today.com/wh...

[gutlesswonder]

Here are the main non-malignant conditions which can cause an elevated CEA:-

Non-malignant liver disease, including cirrhosis, chronic active hepatitis, viral hepatitis and obstructive jaundice.

Chronic kidney disease.

Pancreatitis.

Inflammatory bowel disease.

Irritable bowel syndrome.

Diverticulitis.

Respiratory diseases - eg, pleural inflammation, pneumonia.

Smoking.

Have all of these been considered/ruled out?

[Mulomulo in reply to gutlesswonder]

The docs said even if I had those things the cea should not be so high. Another 2nd opinion from another surgeon has said that all cancer was not removed in the first place and is telling me to do an imrt or proton beam radiation therapy in USA. I am thinking of doing that.

[gutlesswonder]

Here is information about how to obtain an NHS funded referral to an overseas treatment centre.

england.nhs.uk/commissionin...

[Mulomulo]

Thanks guys. Now there is a new revelation. The cancer is back at the site where the new esophagus and stomach is joined. The doctor did a biopsi in my last dilatation and he has confirmed that it is malignant. I am told that I need to do immunotherapy. This is in trial stage but I have no choice as I don't take chemo well. I hope to do another surgery to take out everything and do radical surgery. Does anyone know if someone has completely removed esophagus and stomach out? What is quality of life after that?

[Mulomulo in reply to Mulomulo]

Hi guys,

I am finally told that the spread is in the submucosa. I dont know where this is but according to google it is the layer of areolar connective tissue lying beneath a mucous membrane.

Does anyone have it there? Apparently i should not do radio as it will contribute to strictures. I dont know if proton beam will resolve this as I have no centers here in Singapore. I am resorting to immunotherapy

[Mulomulo]

Also i wanted to ask if anyone has done radical surgery. As in after doing ivor lewis, realizing that cancer is still there, maybe do complete removal of esophagus and stomach. Can anyone describe quality of life for this?