Question on Metastatic Treatment

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crikklekay
Posts: 132
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Question on Metastatic Treatment

Postby crikklekay » Mon Jul 19, 2021 10:50 pm

Here’s a quick rundown: My husband was just about 3 years into remission when his CEA started trending up in February. He has had so many tests and scans since then, and it looks like he has a spot of something high up on his liver. We ended up having to go out of town to find a liver surgical oncologist who was willing to treat John as it is in a difficult location.

There has been a lot of back and forth, our oncologist wants a biopsy/sample of some kind so she knows exactly what she’s treating. There are other cancers that can appear in the liver that express CEA and she doesn’t want to give him random chemo without knowing what it is. The other team says it’s statistically most likely the same kind of tumor so to do chemo for three months and see if it responds, if not then try different chemo before taking the spot out. There is no good way to biopsy it, and if they just remove it they don’t have anything to watch. But his oncologist is concerned that with that approach John may get too sick to do the surgery, or by the time they find the right “mix” he may not be able to stand treatment (Folfox 6 was hard on him).

It sounds like they’re starting to agree with the surgical biopsy approach, but I was curious what other’s experiences have been? Is it common to treat without getting a biopsy of some kind? Or do most get a pathological diagnosis of some kind first?
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
2019/2021 Colonoscopy Clear
2019/2020/2021 CT Scan Clear
2021 PET scan shows activity on liver
2021 MRI confirms one spot on liver

catstaff
Posts: 101
Joined: Wed Mar 03, 2021 11:37 am

Re: Question on Metastatic Treatment

Postby catstaff » Tue Jul 20, 2021 11:50 am

I am not a physician but when my husband had his recurrence they insisted on a biopsy just "to be sure" even though it was quite apparent from imaging that it was 1. cancer and 2. the same he had had (what they were able to biopsy was probably a local recurrence but the mets would be similar). So yeah, I am not surprised they want a biopsy.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

stu
Posts: 1503
Joined: Sat Aug 17, 2013 5:46 pm

Re: Question on Metastatic Treatment

Postby stu » Wed Jul 21, 2021 3:09 am

You might want ask them about tumour tracking with the biopsy . My mum never had one in her lung met which was seven years after initial diagnosis due to concerns about the tumour cells tracking the needle . This used to be talked about a lot on the forums. Not sure if practice has changed but there did use to be concerns in that regard and worthwhile having a discussion around .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

crikklekay
Posts: 132
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Question on Metastatic Treatment

Postby crikklekay » Wed Jul 21, 2021 9:20 am

Catstaff - John's main oncology team says that's the standard procedure, that you don't treat unless you know what you're treating. The nurse even said there is a very slight chance this is nothing and the issue is elsewhere. The other team is at a university and were more interested in what clinical trials have shown, but once the main oncology team pointed out all of those participants knew exactly what cancer they had they apparently changed their minds.

Stu - I read about that when they started talking about biopsies. I'll be sure to let John know to bring it up, though I think the intent is to remove the whole spot? It's open surgery so the thought is if John is going through that much risk and recovery they should just remove the whole thing. Unless that has changed, the one common thing in the last 5 months is that the target keeps moving. His oncologist also wants the surgeon to check John's insides to make sure there isn't anything small the scans can't see, says his treatment will differ depending on what he finds.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
2019/2021 Colonoscopy Clear
2019/2020/2021 CT Scan Clear
2021 PET scan shows activity on liver
2021 MRI confirms one spot on liver


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