Life with bowel cancer

Chelts

Looks like the rabbits are back........

After having a large Dukes B tumour removed from my sigmoid last July and 8 rounds of supposedly adjuvant Capecetabine with CEA markers at 1, I thought everything was looking good.
However, as soon as my chemo (the ferrets) stopped, it looks like the cancer cells (rabbits) are back and reproducing again as my CEA markers have gone from 1 -> 3 -> 5 -> 11 in the past 4 months since removing the ferrets.
Recent CT scan and colonoscopy were both clear, but something is not right so have now been referred for a PET scan to find where the rabbits are nesting.
If they find them I assume my initial grading was incorrect and I was in fact Dukes D?

Can't see what else it can be. Anybody else had similar experience?

Not what I wanted, having just become a grandad again with another one on the way in September!!

Bear G

Hi @Chelts

Firtsly, I like your ferrets and rabbits analogy!

Sorry to hear your CEA is rising but, as I'm sure your team has said, it doesn't necessarily mean it's back or that it's got significantly worse. The CEA is a general guide and, although the levels are rising, they're only drifting up and not rocketing. This factsheet gives some useful information on CEA levels:
www.beatingbowelcancer.org/...ing-Your-Follow-Up-V2.0-Jan17.pdf

Your team are doing all the right things with the scans, they're the only 'cast iron' tests to see what's going on. The fact that nothing is showing on the CT scan indicates that if there's anything then it's small, therefore new, therefore likely to be more responsive to treatment. It shows how important these follow up tests are for us.

In terms of your grading or staging, if there is something there now it doesn't necessarily mean your original grading was incorrect, more likely things have changed and it's come back, a recurrence. I've had 2 significant recurrences, both successfully treated. If it's back then you may be Dukes C or D depending on what's going on, see this booklet for details:
www.beatingbowelcancer.org/...owel-Cancer-Treatment-Pathway.pdf

The best advice I can give is not to rush too far ahead with this until you know what's behind the CEA levels, if anything.

Fingers crossed it'll all be fine and you'll still be a Dukes B, if not, don't write yourself off yet, there are lots of us living long lives as Stage 4 / Dukes B!

Congratulations of the Grandkid(s)!

Big hugs
Bear
:x::x:

Chelts

Well, that's got them scratching their heads......... CT scan- clear, PET scan- clear, colonoscopy- clear..... yet my CEA markers continue to rise.... 1->3->5->7->11->13 in 5 months.
Where to next?
Its good that they can't see any larger growths but worrying that they can't find out why my markers continue to rise.
Don't suppose anybody has been through similar, with an outcome?

WendySue

Hi again @Chelts having just read your post about new activity I have seen this update. I have recently had a scan that had been approved as stable but a steady rise in my CEA marker has led to decision to change treatment. Not quite same as you as thankfully you have clear scans. Have your team reassured you about this?

Chelts

Hi @WendySue,
Unfortunately I have not been reassured fully as something is causing my CEA markers to rise but they don't know what. The suspicion is cancer activity somewhere but where???
They are thinking of giving it 6-8 weeks and then to do another PET scan to see if anything has developed further.

WendySue

Hi @Chelts I find the use of CEA markers confusing as my oncologist had previously been quite dismissive of their relevance and had said main guide is the scan. Yet now the scan for me shows stability but CEA rise been used to justify ending my treatment. It is good your team are going to do a PET scan and will keep fingers crossed for good result.