Still Hunting

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Still Hunting

Postby beach sunrise » Sat May 22, 2021 1:33 pm

Update: CEA on the rise with no visual target. Sent previous 2 scans off for a 3rd read. A fresh pair of eyes looking might tell me more. I hope so. Next scan will be end of June. I'm a little confused on what scan I should push for? It's been CT/with and without contrast. Last MRI and PET was July 2020.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Still Hunting

Postby catstaff » Sat May 22, 2021 2:37 pm

What is the current number? I assume non-malignant sources have been ruled out?

I'd say PET would be the best bet though you may have some difficulty getting your insurance to pay for it. They may pay for one a year, however, so July may work out if your onc will go for that.
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-

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Still Hunting

Postby beach sunrise » Sun May 23, 2021 12:15 am

Hi catstaff, I thought about PET also. My surgeon is all about CT's. I'll have to come up with a very good argument for a different scan for sure. Knowing about different scans are my weakness when it comes to all this.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Still Hunting

Postby catstaff » Sun May 23, 2021 7:23 am

So you don't have an oncologist right now at all? I don't know the specifics of your particular surgeon, but I can guess that a surgeon may be "all about CTs" because that's what they use and are trained in. Surgeons are not diagnosticians. An oncologist does a residency in internal medicine and just does the oncology specialty as a fellowship. So they are at least trained in diagnostics. Surgeons spend their entire residencies and fellowships (if they do a fellowship) learning the considerable skills they need.
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-

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Still Hunting

Postby claudine » Sun May 23, 2021 11:05 am

Mmm. Same boat here. Except with even higher CEA (75.5!!), yet when I asked my husband’s oncologist about MRI or PET he told me that CT with contrast is the best to catch whatever is going on. I guess we’ll see at next scan (June 17), but if still nothing we may push harder for PET. Like catstaff wrote, insurances may be willing to pay for a yearly one.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Still Hunting

Postby beach sunrise » Sun May 23, 2021 12:59 pm

I have a new oncologist just had it split up between onc and surgeon to get the most aggressive plan I could. First onc wouldn't offer anything more than min SOC after adjuvant folfox and I felt I needed a more watchful approach so my surgeon stepped up to take the scanning part of every 3mths. I found a new onc last yr and ran as fast as I could from the first one :)
Claudine, your husbands scan will be before mine so I am interested if his scan will show anything. Please keep us updated.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Still Hunting

Postby catstaff » Mon May 24, 2021 10:14 am

All I can say is that CT with contrast did *not* catch my husband's mets. The bone met was barely visible but not noted as such. The pelvic recurrence seems to have been difficult to distinguish from bone. And the lymph nodes didn't reveal themselves at all. But CEA is a sensitive marker for him and he had a sudden and large rise so the onc went straight to a PET.
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-

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Still Hunting

Postby claudine » Mon May 24, 2021 10:34 am

All I can say is that CT with contrast did *not* catch my husband's mets.


Definitely my concern, but the onc kinda brushed it off. Since I'm not the patient, and my husband would rather follow the onc's recommendations, I find myself in a weird spot to try and push for more...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Still Hunting

Postby catstaff » Mon May 24, 2021 10:59 am

I have to confess that I'm baffled at the onc's nonchalance toward such a CEA value. Anything that high is almost never due to non-malignant processes.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4954749/
https://ascopost.com/issues/august-15-2 ... al-cancer/
In the MSK study described in the ASCO Post above, they say "no confirmed elevation greater than 35 ng/mL was a false-positive."

DH's was 9 when the PET was ordered, 18 the day of the PET, and it got to 40 when FOLFIRI started. It is now back to 8.6 after 4 rounds. We are hoping it will continue downward.
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-

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Still Hunting

Postby beach sunrise » Mon May 24, 2021 11:34 am

You all are giving me ideas, thanks! I am worried about my liver, AST is at 48.

I found this:

The superiority of PET over CT alone for detection of extrahepatic disease was also suggested in a systematic overview of retrospective data that utilized a scoring system to weigh the individual studies according to the quality of the data and the clinical impact of the radiographic findings [27]. For the six articles judged to be of the highest quality [31-36], the pooled sensitivity and specificity for PET were 80 and 92 percent, respectively, for hepatic disease, and 91 and 98 percent, respectively, for extrahepatic disease [27]. The corresponding values for CT were 83 and 84 percent, respectively, for hepatic metastases, and 61 and 91 percent, respectively, for extrahepatic metastases. The percent change in clinical management from the performance of PET ranged from 20 to 32 percent (average 25 percent).

The results of restaging PET scans (particularly if negative) must be interpreted in the context of recent therapy. Chemotherapy may reduce the sensitivity of PET for the detection of liver metastases, thought due to decreased cellular metabolic activity following chemotherapy [37-39]. In one study, the false negative rate for hepatic metastases of a PET scan performed within four weeks of chemotherapy was 87 percent [38]. Thus, surgical decisions should not be based on PET scan results in the liver.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Still Hunting

Postby catstaff » Mon May 24, 2021 12:15 pm

MRI is usually regarded as most accurate for the liver, but in the case of the liver the CT will generally at least show some suspicious shadows. MRI won't be particularly good at things like lymph nodes.
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-

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Still Hunting

Postby claudine » Mon May 24, 2021 12:34 pm

In the MSK study described in the ASCO Post above, they say "no confirmed elevation greater than 35 ng/mL was a false-positive."


Oh I have no doubt that it's not a false positive! My main thought is that it's his L4 met that's acting up again. The March scan says "Mixed lytic and sclerotic defect within the L4 is
stable. No new osteolytic or blastic bone lesions". But I think it has the potential to start invading the psoas muscle again. Unless of course there's a new bone met somewhere that hasn't been detected yet. Or somewhere else. Ugh. If next CT still doesn't identify anything, and the onc still doesn't suggest a PET scan, I will try to push for it...

Beach Sunrise, after reading your comments on AST values, I went back to my husband's metabolic panel and his is in the normal range, fluctuating (28, 27, 28, 34, 32...). So hopefully nothing hiding in his liver.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Still Hunting

Postby Green Tea » Mon May 24, 2021 12:52 pm

beach sunrise wrote:... I found this:

"The superiority of PET over CT alone for detection of extrahepatic disease was also suggested in a systematic overview of retrospective data that utilized a scoring system to weigh the individual studies according to the quality of the data and the clinical impact of the radiographic findings [27]. For the six articles judged to be of the highest quality [31-36], the pooled sensitivity and specificity for PET were 80 and 92 percent, respectively, for hepatic disease, and 91 and 98 percent, respectively, for extrahepatic disease [27]. The corresponding values for CT were 83 and 84 percent, respectively, for hepatic metastases, and 61 and 91 percent, respectively, for extrahepatic metastases. The percent change in clinical management from the performance of PET ranged from 20 to 32 percent (average 25 percent).

The results of restaging PET scans (particularly if negative) must be interpreted in the context of recent therapy. Chemotherapy may reduce the sensitivity of PET for the detection of liver metastases, thought due to decreased cellular metabolic activity following chemotherapy [37-39]. In one study, the false negative rate for hepatic metastases of a PET scan performed within four weeks of chemotherapy was 87 percent [38]. Thus, surgical decisions should not be based on PET scan results in the liver..."

Reference ==> https://www.uptodate.com/contents/management-of-potentially-resectable-colorectal-cancer-liver-metastases#!.

Last edited by Green Tea on Mon May 24, 2021 1:22 pm, edited 1 time in total.

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Still Hunting

Postby crikklekay » Mon May 24, 2021 1:15 pm

My husband has been dealing with a slowly increasing CEA since February, and his Onc started with a colonoscopy (clear) then a CTscan (also clear) but when his CEA kept going up she ordered a PET scan which had a spot lit up on his liver. Now we have an MRI this Friday to get more details on what's actually going on with his liver. Other than his albumin being a hair below normal, the rest of his bloodwork was spot on so CEA has been the only thing really off on his labs (though I know CEA isn't always a good indicator for people). His Onc said if the PET scan was clear then an upper endoscopy would be next, we appreciate how thorough she's being to hunt down why his CEA is being weird.

If there has been a recent CTscan that is clear maybe you could push for a PET scan? It looks at things differently and might catch something a CTscan just isn't equipped to find. I was surprised how many of my friends and family told me nothing must be wrong because the CTscan was clear, like that was the end-all be-all test. If insurance is an issue they can send in a preauthorization to see if it will be covered.
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
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Still Hunting

Postby catstaff » Mon May 24, 2021 3:14 pm

CTs are usually done alongside the PET so they can correlate the bright spots with structures, so it's actually a twofer.

The MRI should be pretty definitive for a liver spot. I wondered how the radiologists could be so confident about whether a spot was a cyst or a met (CT cannot easily distinguish those) and one thing they can do is use multiple-phase photos where one type of lesion blinks on and off and the other is steady.

Claudine, how large was/is your husband's bone met? My DH's was under a cm but your experiences make me worry that chemo will not keep it under control very well, yet they have not been supportive of irradiating it, even though it should take only one or at most two treatments. I will go with him next cycle since we'll have a CT to discuss so maybe I can bring that up again.
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-


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