Marking time from first diagnosed or??

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Capri
Posts: 80
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)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

crikklekay
Posts: 142
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
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

radnyc
Posts: 446
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 2010, at age 47
Feb - colon resection - 2/17 nodes positive
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 2011
HAI Pump removed Dec 2015

Nohogirl
Posts: 116
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 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

Pyro
Posts: 305
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- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Beckster
Posts: 438
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/F
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
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 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 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

NHMike
Posts: 2555
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: 789
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 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

User avatar
Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Marking time from first diagnosed or??

Postby Kick'nAssCancer'sAss » 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 RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 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 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

Capri
Posts: 80
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)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

User avatar
susie0915
Posts: 945
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5


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