First bad scan

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jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

First bad scan

Postby jts » Mon Jul 13, 2020 10:10 am

I am about 6 months since my primary surgery for RC, and about a month since the end of adjuvant FOLFOX. I had a PET-CT scan today. The doctor found some 6mm bright spot in the back part of my lung. He didn't try to down-play it or anything. Just that it will have to go to a tumor board. He said he looked back at my CT scan pre-surgery, and could see about a 1mm thing there back then, but it was never noted a suspicious.

I guess it would explain my rising CEA. I'm terribly disappointed though. I hoped that I would at least have a sort of NED honeymoon after chemo to not be sick and recover some strength.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

Vana3
Posts: 59
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: First bad scan

Postby Vana3 » Mon Jul 13, 2020 10:28 am

So sorry to hear about your scan news. I am 12 weeks out from liver surgery and have had a scan that was clear but with areas to watch and now I had a CEA spike and am headed for an unplanned scan tomorrow to see if somethings going on.
I have read a lot of stories on hear about individuals treating one lung thingy in different ways some without chemo. Many of those stories are very hopeful. Remember to breathe
Big Hugs
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5
5 cm tumor in cecum removed, 17 + out of 45 LN
Cea 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET liver spots
9/19 - 3/20 FOLFOX
1/20 CEA 3.6,4.4, 4.6, 4.6
Liver resect 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB CRC
post surgery cea 2.6
11/20 clear scans
2/21 clear scans
4/21 spleen met
5/21 pet scan picks up subtle concerns in liver as well as confirms spleen
Cea 4.6
5/21 to current folfiri
Cea 10

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: First bad scan

Postby beach sunrise » Mon Jul 13, 2020 10:55 am

Oh man!!! Its just one thank goodness!!! Let us know what the board says. Maybe its just scarring or something. I was so hoping you were done with 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

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: First bad scan

Postby roadrunner » Mon Jul 13, 2020 12:06 pm

One question — and it’s just a question, I’m not sophisticated enough to know whether this line of thinking is really useful, but given the details on the timing of your scans, that seems like an awfully fast growth rate for an RC lung met, no? I think the normal “doubling rate” is median 100 days give or take, and I’ve seen it on occasion be in the 50s, but that's pretty extreme. As I understand it, the diameter increases by .26 when the volume doubles. As I said, I may be misunderstanding something there, and perhaps someone else who understand this better could chime in, but maybe ask the oncologist about that?
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: First bad scan

Postby jts » Tue Jul 14, 2020 3:50 pm

roadrunner wrote:One question — and it’s just a question, I’m not sophisticated enough to know whether this line of thinking is really useful, but given the details on the timing of your scans, that seems like an awfully fast growth rate for an RC lung met, no? I think the normal “doubling rate” is median 100 days give or take, and I’ve seen it on occasion be in the 50s, but that's pretty extreme. As I understand it, the diameter increases by .26 when the volume doubles. As I said, I may be misunderstanding something there, and perhaps someone else who understand this better could chime in, but maybe ask the oncologist about that?


Volume is a cubic function of diameter, so a 6x increase in diameter is a 216x increase in volume. That is 7.8 doublings. The scan the doctor was comparing to was I think 8 months old, so it corresponds to a doubling about every month. I've seen some papers estimating 30-35 days as a median doubling time. What is more surprising is that the Drs looking at my Jan and May CT scans didn't notice anything suspicious.

Another bummer is that this little jerk was happily growing for 6 months while I was on FOLFOX! Is it safe to say 5FU does nothing for me? It was the same with neoadjuvant chemoradiation. I was suffering, and pathology showed my primary tumor was basically having a party.

The discussion with the Dr was after he just took a quick look right after the scan. They were supposed to look more closely later to make the official findings. Hopefully this one is all they find. Ugh.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: First bad scan

Postby jts » Tue Jul 14, 2020 3:57 pm

Vana3 wrote:So sorry to hear about your scan news. I am 12 weeks out from liver surgery and have had a scan that was clear but with areas to watch and now I had a CEA spike and am headed for an unplanned scan tomorrow to see if somethings going on.
I have read a lot of stories on hear about individuals treating one lung thingy in different ways some without chemo. Many of those stories are very hopeful. Remember to breathe
Big Hugs


Yes, I know the feeling. I hate is when oncologists say to not worry about CEA. It is great that your oncologist is so responsive in ordering a scan after one spike.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: First bad scan

Postby beach sunrise » Tue Jul 14, 2020 4:23 pm

Hi jts, maybe a naturopath consult to see if anything can help synergize the chemo. I have learned that for some the 5FU needs a boost such as PSK or something. Just a thought.
Nevermind, you finished chemo already. Forgot for a second.
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

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: First bad scan

Postby roadrunner » Wed Jul 15, 2020 11:37 am

Hmm . . . I basically agree on your math, but the *lowest* Vdt I’ve seen for crc Mets is 29 days, median usually 95 or so. Median 30 would make them super fast growing. So maybe this still is growing too fast to be a met? I’ll try to find and link a couple of studies.

I think you’re right on the chemo part, though. There are some exceptions, but it’s not as effective with crc lung mets.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: First bad scan

Postby roadrunner » Wed Jul 15, 2020 12:27 pm

Here’s one study covering a good number of pulmonary crc mets. Doubling time here is lower than other studies I’ve seen, but well over 30.

https://doi.org/10.1093/jjco/hyi010
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: First bad scan

Postby stu » Wed Jul 15, 2020 4:22 pm

Just a wee something to encourage you . It’s horrible to hear something may have travelled to another organ . My mum had one solitary met removed back in 2016. Doing just great . Take the time you need to get to grips with this and then you can move forward to removing it whilst it is small and manageable. It is desperately disappointing but honestly the lung met was the easiest surgery and recovery my mum had and she never looked back from it . But I get right now it’s a blow and takes time to balance out .
Wishing you strength to face this ,
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 .

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: First bad scan

Postby jts » Wed Jul 15, 2020 4:45 pm

stu wrote:Just a wee something to encourage you . It’s horrible to hear something may have travelled to another organ . My mum had one solitary met removed back in 2016. Doing just great . Take the time you need to get to grips with this and then you can move forward to removing it whilst it is small and manageable. It is desperately disappointing but honestly the lung met was the easiest surgery and recovery my mum had and she never looked back from it . But I get right now it’s a blow and takes time to balance out .
Wishing you strength to face this ,
Stu


Thanks for the encouragement. What type of surgery did she have?
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: First bad scan

Postby jts » Fri Jul 17, 2020 5:24 am

So I got the official report after this scan. The one lung thingy is the only one they found. I've had 5 Ct scans now, and they were able to see evidence of it in each one. I went back and looked carefully at the scans, and I can see it pretty obviously in the last three. The tumor size is about:
08/2019 - 1 mm
11/2019 - visible
02/2020 - 3 mm
05/2020 - 4 mm
07/2020 - 6 mm

It seems like this is enough evidence that it's growing (fast), and with my rising CEA should be enough evidence that it's disease. The Dr that ordered the PET/CT brought it up in their tumor conference, and the experts there want to wait 3 months and do another scan "to see if it's growing". This is really frustrating. They are acting like the met just appeared because this is the first time it was noted in the written report. But the new radiologists went back to the old scans and documented that it was there, and documented the growth.

Am i wrong in wanting this thing cut the f*** out as soon as possible? Or it reasonable to chill out for three months and give this thing more chance to spread or reach my spine (it's on the edge of lung, a couple mm away)?

The fact that this grew so fast while I was on FOLFOX says to me that chemo is not even going to slow anything down, and cutting stuff out is my only hope.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: First bad scan

Postby roadrunner » Fri Jul 17, 2020 12:14 pm

Given the explanation that they want to wait “to see if it’s growing,” I think it would be reasonable to review the radiologists’ prior findings with your oncologist and ask (1) why those findings don’t answer that question? And (2) whether there is some (other) reason that they think this might reasonably not be a metastasis?
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

User avatar
betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: First bad scan

Postby betsydoglover » Fri Jul 17, 2020 1:29 pm

Everyone says to go to a major cancer center and I get that. I live in DC area and most local oncs are well connected with such centers if needed. I hope the tumor board is not in control of your treatment. When my lung thing first appeared (very subtle on PET), my once suggested a few thoracic surgeons I should consult with. I did and after consultation and another CT the met was removed. I think you should consult independently with a thoracic surgeon.

My situation was iffy. The lung spot was very subtle. The surgeon thought it was most likely cancer, BUT his advice was:
1) it's easy surgery and if the results are positive, you will be SO glad to have it out
2) If by some chance it turns out not to be cancer, then I'll be so happy I won't worry about "unnecessary" surgery.

None of thought it was most likely not a met. I am so glad I did the surgery. Multiple path tests were done in the OR to ensure it was a CRC met and not primary colon cancer.

If you feel you are being made to wait and see too long, then consult with a surgeon.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: First bad scan

Postby jts » Wed Sep 23, 2020 7:11 am

Thank you for the responses.

After meeting with a couple surgeons I had the lung tumor removed about 2 weeks ago. They removed the drain the day after surgery, and after that I fell pretty much OK, and was able to go back to normal life after about 3 days. They took out only one lymph node and it was not cancerous.

The oncologist at the medical school also ordered genetic testing of my primary tumor samples. I am an NRAS mutant, BRAF and KRAS wt. It seems like any RAS mutation has about the same implications for prognosis and future treatment.

The doctors at the hospital suggested waiting a month or so before measuring CEA again, so some time in October. I really really hope this tumor was the problem and it goes back down to normalish.

Since Xeloda and FOLFOX seem to have no effect on me, and based on having a RAS mutation, the oncologist at the medical school suggested they may try Durvalumab (PD-L1 antibody) and Tremelimumab (CTLA-4 immune checkpoint blocker) if/when I get another recurrence. From what I read, there was a big trial in Canada, and they were found to have some effect on some MSS patients. Not a huge effect - more like patients lived 8 months instead of 6. Hopefully I will get a NED honeymoon for at least awhile this time, and don't have to worry about drugs or chemo for awhile.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.


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