What are the options now - Recurrent cancer!!

[bala]

Hi all,
We have been trying to chase a soft tissue lesion along right internal illiac region since 6 months that showed up in PET scan with high SUV. Went in for laproscopic removal of the same and the biopsy came negative. But CEA continued to rise so went for PET scan after 3 months which showed the same soft tissue grown from 2.7 to 3.9 cm which means surgeon did not remove it. So went for open surgery again hoping to remove it. The same story repeated, biopsy came negative and CEA continued to raise, when we went for another PET scan couple days back, the same soft tissue is grown from 3.9 to 4.2 cm and new nodes in common illiac and right internal illiac region have shown up with the largest one measuring 1 cm.

Our onc this time suggested, chemo(FOLFIRI + avastin) is the only option.
Want to know, if there is any other option right now.
If we are taking chemo, what should we expect this time?
Thanks a lot for any inputs.

Bala
Son of mom,
May'11 - surgery to remove the tumour in rectum
Found stage 3c. ( 10/26 nodes +ve)
June - Dec' 11 folfox chemo + radiation
Dec'11 - pet ct - clear

[pog451]

Hey bala.

The big question for me would be why they keep missing the lesion? Its not as if its small at 4cm and theres not a lot of places for it to hide.

The thing with biopsies is that they have, to get a bit statistic-nerd on you, a high sensitivity, ie if they come back positive they are pretty certainly positive, but a low specificity, which means if they come back negative its a lot less certain that they are actually negative. Have you tried asking them to repeat the biopsy analysis? Can they not do a guided needle biopsy?

The issue with PETs is similar - they throw up a lot of false positives. What did they do with the PET, CT? MRI? if they cant see the lesion properly on the scans they've done, perhaps they should try a different combo?

The combination of rising CEA (how high is it?) a glowing PET and now lymph nodes is very suspicious, its true, but I really cant understand how they can perform multiple surgeries and biopsies and not find a malignant tumor. Can they biopsy a lymph node?

Lots of people get on pretty well with FOLFIRI, search here for detailed experiences, but why is this the "only option?" Cant you go back to FOLFOX? What about Erbitux? Is your mom KRAS mutant?

[GreenMonkey]

on a side note.... so great that you are there for your mom. nothing like a mother/son bond. she is blessed to have you.

I hope you get the answers you need. it doesn't make sense to me that they keep missing the lesion. All the best to you and your mom!

[dianne052506]

sounds like it might be time for a second surgical opinion. Are you close enough to a major cancer center to try an appointment there?
Best wishes,
Dianne