Stage 1 to Stage 4

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DCook54
Posts: 31
Joined: Sat Sep 05, 2020 10:12 pm

Stage 1 to Stage 4

Postby DCook54 » Sun Sep 27, 2020 9:40 pm

Hi everyone. This my first post but I have been reading the stories and experiences on this forum, and I appreciate all of you for sharing. In December of 2019, I was dx with adenocarcinoma when a 5 cm mass was found during a routine colonoscopy. I had a partial colectomy to remove the mass and zero lymph nodes of the 31 taken showed any evidence of metastasis. In July, I had a CT scan bc I was experiencing severe abdominal pain, and by the grace of God, mets to my lower lungs were seen in the abdominal CT. 2 nodules were removed from each lung, and I am now half way through my 3rd Folfox cycle. I went from Stage 1 to Stage 4. I noticed that few people on this forum begin with lung mets. I am so afraid that something was missed in my liver. I have scans again in December, and I hope my cancer is being obliterated by the chemo. Thanks for letting me share!
54 yo f
Stage IV colon- mets to lungs
KRAS G12V
Dec 2019- partial colect adenocarcinoma
0/31 LN
Jan 2020-PET NED
Jan 2020- Staged at I
July 2020-Ct-nodules both lungs
July 2020-VATS both lungs pos crc mets Stage IV
Aug 2020 began 1/6 cycles Folfox
Nov 20 Comp 6 Folfox
Dec 20 Colonoscopy/CTs clean
Dec 20 NED
April 21 Stable scans. 4 mm lung nodule to watch
Aug 21 VATS 2 nodules cancer
Sept 21-present Xeloda Main.
Nov 22 clear scans = 15 months NED
Dec 22 pleural effusion neg for cancer

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

Re: Stage 1 to Stage 4

Postby roadrunner » Sun Sep 27, 2020 10:42 pm

My knowledge of Stage 4 issues is limited, but I think you can be reassured that you are addressing your concern about “something being missed” through the FOLFOX chemo. It is a systemic therapy that is designed to address cancer wherever it is, and particularly micrometastases. While it’s true that scans have thresholds, and there is no certainty with cancer, there may well be nothing additional, and if there is you’re hitting it optimally. At worst, if this chemo fails, you are still ahead of the situation, and will be able to monitor to change course if necessary. It seems your cancer threw you a curveball, and that’s definitely tough, but you’re also fighting from the high ground with the current strategy. I wish you the best.
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

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 1 to Stage 4

Postby boxhill » Mon Sep 28, 2020 9:50 am

Where was your original tumor? What were the results of your biopsies? Do you know your MSS/MSI status, KRAS, BRAF, etc?

It sounds as if you didn't have adjuvant chemo, and that you didn't have follow-up scans until you had pain in July, and then won't have had any scans after lung surgery until December? This seems very odd to me.

It does seem comparatively rare for people to experience lung mets without liver mets, but sidedness is a factor.

I'm sorry you've had this development, but glad it has been found and treated. Putting more info about your case in a sig would help us be more helpful.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

DCook54
Posts: 31
Joined: Sat Sep 05, 2020 10:12 pm

Re: Stage 1 to Stage 4

Postby DCook54 » Mon Sep 28, 2020 8:24 pm

Thank you for your responses. I added a signature but I do not know all of the language of this disease yet. I am waiting for the results of genomic testing, which I should receive next week.
54 yo f
Stage IV colon- mets to lungs
KRAS G12V
Dec 2019- partial colect adenocarcinoma
0/31 LN
Jan 2020-PET NED
Jan 2020- Staged at I
July 2020-Ct-nodules both lungs
July 2020-VATS both lungs pos crc mets Stage IV
Aug 2020 began 1/6 cycles Folfox
Nov 20 Comp 6 Folfox
Dec 20 Colonoscopy/CTs clean
Dec 20 NED
April 21 Stable scans. 4 mm lung nodule to watch
Aug 21 VATS 2 nodules cancer
Sept 21-present Xeloda Main.
Nov 22 clear scans = 15 months NED
Dec 22 pleural effusion neg for cancer

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 1 to Stage 4

Postby boxhill » Wed Sep 30, 2020 7:02 pm

Thank you for the additional info. Do you know where in your colon the original tumor was? Ascending, transverse, left side, sigmoid? BTW, it is good that your surgeon took a lot of lymph nodes for biopsy and they were clear, although unfortunate that you developed mets anyway. FWIW, it is my (limited) understanding that left side tumors are somewhat more likely to metastasize to the lungs.

I hope you are tolerating chemo comparatively well. Some people have a really hard time, others of us don't. But even for those of us who aren't racked by nausea or other nasty symptoms, it is tough, and gets tougher as time goes on. Be kind to yourself, and let us know when you have the genetic information.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage 1 to Stage 4

Postby Lee » Thu Oct 01, 2020 3:17 pm

Am I correct to assume you had rectal cancer vs colon cancer? If that is the case, what I am about to say is not set in stone, butt generally rectal cancer tends to metastasis to the lungs while colon cancer tends to metatasis to the liver. Something to do with the lymph nodes & how the cancer cells can travel.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

DCook54
Posts: 31
Joined: Sat Sep 05, 2020 10:12 pm

Re: Stage 1 to Stage 4

Postby DCook54 » Thu Oct 01, 2020 7:29 pm

I have colon cancer. It was a 5 cm mass in my ascending colon. It seems so strange to have colon cancer in my lungs!
54 yo f
Stage IV colon- mets to lungs
KRAS G12V
Dec 2019- partial colect adenocarcinoma
0/31 LN
Jan 2020-PET NED
Jan 2020- Staged at I
July 2020-Ct-nodules both lungs
July 2020-VATS both lungs pos crc mets Stage IV
Aug 2020 began 1/6 cycles Folfox
Nov 20 Comp 6 Folfox
Dec 20 Colonoscopy/CTs clean
Dec 20 NED
April 21 Stable scans. 4 mm lung nodule to watch
Aug 21 VATS 2 nodules cancer
Sept 21-present Xeloda Main.
Nov 22 clear scans = 15 months NED
Dec 22 pleural effusion neg for cancer

DCook54
Posts: 31
Joined: Sat Sep 05, 2020 10:12 pm

Re: Stage 1 to Stage 4

Postby DCook54 » Thu Oct 01, 2020 7:35 pm

Also, I don't understand how they can say NED after my lung surgery when there have been no further scans. I am not a negative person at all!! It may seem that way, but I just want to live! I go back for treatment #4 Monday, so I am going to ask more questions now that it has finally settled in my brain that I have cancer and after reading on this forum, I need more information that I had not thought of before.
54 yo f
Stage IV colon- mets to lungs
KRAS G12V
Dec 2019- partial colect adenocarcinoma
0/31 LN
Jan 2020-PET NED
Jan 2020- Staged at I
July 2020-Ct-nodules both lungs
July 2020-VATS both lungs pos crc mets Stage IV
Aug 2020 began 1/6 cycles Folfox
Nov 20 Comp 6 Folfox
Dec 20 Colonoscopy/CTs clean
Dec 20 NED
April 21 Stable scans. 4 mm lung nodule to watch
Aug 21 VATS 2 nodules cancer
Sept 21-present Xeloda Main.
Nov 22 clear scans = 15 months NED
Dec 22 pleural effusion neg for cancer

Dionca
Posts: 48
Joined: Sat Dec 02, 2017 2:04 am

Re: Stage 1 to Stage 4

Postby Dionca » Fri Oct 02, 2020 11:20 am

As Lee mentioned, it appears that rectal cancer tends to go first to the lungs, and colon cancer goes to liver first.

However, this is not always the case. I had cancer in the most right-sidedness you can get - the cecum (had both cecum and ascending colon removed) and my recurrence like yours, was in the lungs not the liver. I had been paying close attention to the liver reports from each scan, and not so much the lungs.

I may be an odd case though, because my recurrence was almost 5 years after my original diagnosis - just when I thought I was out of the woods! I've been googling (to no avail) to find out what the odds are that it will "backtrack" and hit the liver later on!

I don't understand how they can say NED after my lung surgery when there have been no further scans.

This probably means that they got all of the cancer and the margins were clear. They usually scan before surgery so they know what to remove.

best wishes
stage 3b T3 N1b MX 2/27 nodes (surgery 4/2015)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (w/out oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy
recurrence in left lung (surgery May 2020)

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Stage 1 to Stage 4

Postby DarknessEmbraced » Sat Oct 03, 2020 10:10 am

I'm so very sorry your cancer spread to your lungs.*hugs* I hope your chemo goes well.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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

Re: Stage 1 to Stage 4

Postby roadrunner » Sat Oct 03, 2020 6:09 pm

I believe the liver is still the most common metastasis site for both colon and rectal cancer, followed by the lungs in both cases, but metastasis to the lungs is more common in rectal cancer than colon cancer. Still, a substantial portion of over all colon cancer metastases go to the lungs (it’s the second most common site, as it is for rectal cancer). So overall, it’s not super weird to have colon cancer metastasize to the lungs and not the liver, though it’s not the most common thing. Metastasis to the lungs in colon cancer does not mean there’s metatastis to the liver, in any case.

The numbers I’ve seen are: colon cancer: 70% liver/32% thoracic; rectal cancer: 70% liver/47% thoracic.
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

rachelfromnyc
Posts: 60
Joined: Fri Oct 04, 2019 11:32 am

Re: Stage 1 to Stage 4

Postby rachelfromnyc » Sun Oct 04, 2020 12:20 pm

Sharing my experience. When I was diagnosed, I had mets to my lungs and lymph nodes. From June to September, I did 6 rounds of Folfox after which I was scanned and they saw two new spots in my liver. I was surprised since my orginal CT scan and PET scan showed nothing in the liver. When I asked, my oncologist said they were either there the whole time and missed on the CT and PET (taken in May) or they grew while I was on chemotherapy. The good news is I was switched to Folfiri and it has worked and continues to work so far. My scan in January of this year showed the liver tumors shrinking and by the March scan, they were gone. Liver has been clear since then.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin


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