Marking time from first diagnosed or??

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Capri
Posts: 74
Joined: Thu Apr 19, 2018 5:59 pm

Marking time from first diagnosed or??

Postby Capri » Mon Mar 11, 2019 11:23 am

When can we mark time to say we have had no cancer for 2 years, 3 years, etc?

Is it from the time of the very first Diagnosis? After the first surgery? When chemo ends?
Mom to son 46 yo at Dx (2017)
11/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy; 11/20 CT normal.
3/2019 Abdominal CT normal

crikklekay
Posts: 86
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Marking time from first diagnosed or??

Postby crikklekay » Mon Mar 11, 2019 11:34 am

We mark time from when the Oncologist declared John to have "no evidence of disease", though our Oncologist marks time from diagnosis which was confirmed right after surgery. Technically since they removed the tumor and there was no sign of metastatic disease he was "cancer free" starting 01/2018 and all the chemo was just to mop up any roaming cells. If you go by that he has been cancer free for a little over 1 year, but since we're basically counting from the end of treatment he is only about 7 months out. His second checkup post-treatment is this week, and my heart has been living in my throat since the blood tests last Thursday. I wish they would schedule the appointments the day after like they did during treatment!
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear 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

radnyc
Posts: 340
Joined: Tue Apr 06, 2010 6:32 pm

Re: Marking time from first diagnosed or??

Postby radnyc » Mon Mar 11, 2019 11:45 am

I believe it starts when there’s no evidence of disease. Not at the point of initial diagnosis.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

Nohogirl
Posts: 111
Joined: Sun Oct 14, 2018 12:15 am

Re: Marking time from first diagnosed or??

Postby Nohogirl » Mon Mar 11, 2019 9:56 pm

We were told it starts from the day of the surgery.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Normal Pet Scan

Pyro
Posts: 89
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Marking time from first diagnosed or??

Postby Pyro » Tue Mar 12, 2019 7:37 am

Echo above statements. Correct me if I am wrong, but no cancer equals NED and NED plus 5 years is cured. Remission and NED are interchangeable.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe removed, PVE
May 2016 - 70% of liver removed
Jun 2016-Radiation
Jan 2017-permanent colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Radiation
Mar 2019 - Keytruda, CEA @10

Beckster
Posts: 332
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Marking time from first diagnosed or??

Postby Beckster » Tue Mar 12, 2019 8:32 am

I asked this question being Stage II with chemo. I was NED after surgery, but because I opted for chemo, the survelliance clock started after treatment. He said that if I opted for no chemo, the survelliance clock would start after surgery. Hope this helps.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/17, 12/17, 6/18, 12/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5
Clear Colonoscopy 10/17 :D

NHMike
Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Marking time from first diagnosed or??

Postby NHMike » Tue Mar 12, 2019 11:47 am

I'd say from NED and I'd guess that it would depend on your treatment protocol. I had Chemo + Radiation and then Surgery so for me, it would be the surgery date. I had Adjuvant Chemo but I'd still start the counter at surgery.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

boxhill
Posts: 189
Joined: Fri Apr 06, 2018 11:40 am

Re: Marking time from first diagnosed or??

Postby boxhill » Tue Mar 12, 2019 12:18 pm

Well, technically I was NED according to CT scan after surgery, since all observed masses including enlarged lymph nodes PLUS a liver met that didn't even show on the scan were removed, but I don't think any of us thought I was NED. We assumed that we were dealing with remaining microscopic disease, which was why I was on FOLFOX as adjuvant therapy. Even when the July and November CT scans were clean my onc and I didn't take that as evidence of NED, given the first invisible liver met. "Cautiously optimistic" was the way he assessed it. If my liver MRI had been clean, then I think we would have said NED, but of course it wasn't.

So I am inclined to think that someone can realistically start thinking of themselves as NED or "in remission" from the point that *truly effective* scanning targeted at their likely met sites says they are. I'm inclined to think that PET and CT aren't good enough, because they don't pick up the small stuff.

Of course, I am thinking mostly of stage 3 and 4. Things would be different for a person with Stage 1 or 2 post surgery with clean margins.

Of course, this is just my opinion, and if it helps people to think of themselves as NED on less evidence than I personally requires at this point, that is totally up to them.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda

User avatar
muskokamike
Posts: 214
Joined: Tue Feb 25, 2014 4:38 pm

Re: Marking time from first diagnosed or??

Postby muskokamike » Tue Mar 12, 2019 12:25 pm

I just had my 5th cancerversary. I go by surgery date February 26 2014. Surgery is when the cancer is removed. Many still go by dx.
53M Dx rc10/31/13
and a huge WTF?....then
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR - pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5
2.6 Sept 18
0-4 normal

Capri
Posts: 74
Joined: Thu Apr 19, 2018 5:59 pm

Re: Marking time from first diagnosed or??

Postby Capri » Tue Mar 12, 2019 1:46 pm

Thank you all for your replies. I see there is no hard and fast rule for when to start marking time!
My son's oncologist told us that colon cancer tends to recur most in the first 2 years, and his CC was found on a colonoscopy Nov. 2017 which is why I was asking.
Thanks be to God his chest/abdominal CT this month was normal. I know he has a way to go but I'll take whatever good news we get!
Mom to son 46 yo at Dx (2017)
11/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy; 11/20 CT normal.
3/2019 Abdominal CT normal

User avatar
susie0915
Posts: 904
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Marking time from first diagnosed or??

Postby susie0915 » Thu Mar 14, 2019 9:17 am

My oncologist told me that I was considered NED after surgery, even though I had adjuvant chemotherapy. She also said that most recurrences will occur within 2 years of original diagnosis. Having a my first yearly ct scan since finishing treatment in April. Up until then was having every 6 months. I know it is a good thing I graduated to one year, but I am beginning to get anxious as it has been so long since I have had verification I am NED. Still have CEA levels drawn every 6 months, but I don't know if it is even a marker for me. I had my first one drawn after preadjuvant chemo and was less than .5. So I really don't know what it was when I was diagnosed.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6


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