Follow-up after chemo

[GlitterGirl]

Hi there

I am a UK-based patient and new to the forum. Hoping someone can help me with this.

I am about to finish 6 months of adjuvant chemo (FOLFOX) for a Dukes B adenocarcinoma. It was large (orange sized) but I have been told it was not a particularly aggressive type (no guarantees, obviously!)

I was diagnosed in November 06 and had 83cm of large bowel removed along with 15 lymph nodes (all negative). Since then (largely thanks to a great oncologist) I have had an ultrasound, 2 CT's, a PET and an MRI on my liver, all of which have come back clear. However, my CEA has been consistently elevated (at 9) for the last 6 weeks or so.

I recently went back to see the surgeon who performed the colectomy and he informed me that my oncologist would discharge me after chemo. From then on, I will be back under the care of the surgical team. I will need to have a colonoscopy and a CT scan every 6 months until November 2008. After that, they will only check for recurrence annually.

I'm not terribly happy....most importantly, I don't think 6-monthly checks are enough (particularly with an elevated CEA). Surely there is a risk that any cancer will become too advanced for surgery after such a long period and I would have thought that 3-monthly follow-up was preferable. I would also prefer to remain under the care of my oncologist.

Does anyone have any experience of this? If so, how regularly were you followed up? And was the follow-up done by the onco or the surgeon?

I am going to beg and please to my oncologist on Tues but any information that might help would be gratefully received!!

Thanks very much.

[nodo]

I was stage IIIC (Dukes C) and did the Folfox regimen. I was advised to have blood work every 3 months. In addition, at the 6 month interval, I have a CT and chest x-ray. I am now three years out and they are going to continue that regimen until I reach the 5 year mark. Initially, they recommended it for the first three years, but we decided to keep going until the five year mark for my peace of mind. I would insist on the three month blood test if it would ease your mind. My onco even will repeat my blood work at one month intervals if there was any fluctuation of concern. Best of luck to you and stand firm for what you want.

[missjv]

your elevated cea could be because of chemo drugs. see what it does when chemo stops. if scans are clear then thats good and you also were lucky no lymphnodes were involved. i am scanned every 3 months because i was stage 4 at diagnosis. i think here in america every 6 months might be the norm for stage 2 or 3 but im not 100% sure. it is all nerve racking no matter what stage you are because the shit can and often does return. in a twisted kind of way im almost glad i was diagnosed stage 4 instead of stage 3. at least a reoccurrance will not be a huge surprise as it would be if i was a stage 3 or lower and had reoccurrance which happens alot especailly stage 3 with lymph involvment, i will be very upset if i reoccur but not surprised.

missjv

[GlitterGirl]

Thanks for the responses guys - it is always reassuring to hear from others in the same boat!

I have read lots of posts about CEA levels on this forum and feel lots better - in the UK, I'm not sure the docs discuss CEA levels at all until/unless they go up too high! US patients seem much better informed so I find this forum really useful...I have asked to be told EVERYTHING so I know what I'm up against!!!

Wishing you both many, many more cancer-free years!!!

xxx

[ray]

An elevated CEA, above 2.5 for non-smokers and 5 for smokers should be a reason for continued and perhaps closer surveillance. Mine was always around 1.5-2.0 during chemo and jumped just a bit to 2.6 after chemo and a procedure for persistent peri-rectal abscess.

2.6 prompted a retest in 4 weeks and mine dropped to 2.3 then all the way below 1.

I was also stage II and will be released from my oncologist this October, five years after my diagnosis. My follow visits and CEA were every three months for the first three and half years, then 6 months. CT scans were 6 months for the first three then yearly. My GI doc will continue scopes at least every two years.

[wendy21]

My pre-surgery CEA as 4. Post-surgery it went to 1.7. It started to climb during chemo to a high of 6.4. At that point the doctor order CT, PET, etc. All were clear. The CEA stayed between 3.4 and 5 all through chemo then dropped to its current low of 1.9 6 months post Avastin only and 12 months post FOLFOX. For whatever reason, my doctor thinks chemo caused a rise in my CEA due to inflammation.

[We'll see]

I once talked to my oncologist and asked what they were looking for. He said changes. I know changes, don't need someone to tell me something is wrong, I already know.

I haven't been back for awhile.... get my first tests next week, my guess is just like the first time, you will know. This time maybe they will believe you instead of prescribing anti-depressants.

If they are negative I won't be back, if they are positive...........gotta talk.

[GlitterGirl]

Thanks for your replies - great to hear from you.

I got sent home from chemo last week because of low neutrophils so had a neulasta shot (youch!)

Also found out that my CEA has jumped from 9 to 10.7, which is not good. Still haven't seen the oncologist but I think it could be time for another colonoscopy... it just seems a little too high to be explained by bowel toxicity rather than cancer.

I have also decided to just ask my onco to do my follow-up and explain my concerns about being followed-up by the surgeon. (He basically refused to do any scans, told me I had "picked up" a gynae infection, sent me home from hospital in pain 3 times, and then misdiagnosed appendicitis....)

Although everyone tells me he is a great surgeon (and I have an almost-perfect scar to prove it!) it is difficult to have confidence in him as a physician. I hope the onco doesn't think I'm being unreasonable....

Best wishes and good luck to you all.

[nodo]

Do not worry if you oncologist thinks you are being unreasonable. This is your life and you need to have the testing done that will give you peace of mind. I have heard from numerous people that CEA can be elevated with chemo, so that may very well be the reason that yours is. You said your oncologist is good, so I hope he or she will order another CT to ensure there is nothing else happening. I would also ask your oncologist if he/she can follow up with you every 3 months for CEA and, at the very least, until your CEA comes back down.

Wishing you a lower CEA level...