NEW-Need some positivity here.

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teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Sep 26, 2017 1:54 pm

I'd love to know when you consider yourself NED. Who tells you this? I just had a mass removed and would love to think I'm cancer-free but know that may not be the case. When do you know?
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Tue Sep 26, 2017 2:21 pm

teacher2017 wrote:I'd love to know when you consider yourself NED. Who tells you this? I just had a mass removed and would love to think I'm cancer-free but know that may not be the case. When do you know?



NED stands for No Evidence of Disease. After surgery, I have scans every six months to find out if colon cancer spread to my lungs, liver or pelvis. If there is no spread ....NED. Even though no cancer was found in my lymph nodes, it does not mean it can not recur. Surgery is used to cure you of cancer in stages I,II and III, but there could always be microscopic cells still in you that can not be detected by the surgeon. You will not be considered cured until 5 years. In order to be considered cured...you have to continue to be NED when taking bloodwork and CT or MRI scans. That is why many take chemo...it hopefully kills any microscopic cells that may have lingered...so you stay in NEDville
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

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Sep 27, 2017 6:04 pm

Update- feeling good. Stomach is soft and plumbing is working. Taking walks and trying to think positively. I need Monday to come fast.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Wed Sep 27, 2017 7:11 pm

Happy to hear you are recovering!! :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Wed Sep 27, 2017 7:14 pm

So glad everything is going well.
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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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

NED vs Complete Remission

Postby JJH » Thu Sep 28, 2017 2:57 am

teacher2017 wrote:I'd love to know when you consider yourself NED. Who tells you this? I just had a mass removed and would love to think I'm cancer-free but know that may not be the case. When do you know?


    Partial Remission vs. Complete Remission
    If you're in partial remission, it may mean you can take a break from treatment as long as the cancer doesn't begin to grow again. Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).”Jul 22, 2016
    http://www.webmd.com/cancer/remission-what-does-it-mean
    .

    ...
    Understanding the Difference Between Cure and Remission
    Cure means that there are no traces of your cancer after treatment and the cancer will never come back.

    Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared.

    If you remain in complete remission for 5 years or more, some doctors may say that you are cured. Still, some cancer cells can remain in your body for many years after treatment. These cells may cause the cancer to come back one day. For cancers that return, most do so within the first 5 years after treatment. But, there is a chance that cancer will come back later. For this reason, doctors cannot say for sure that you are cured. The most they can say is that there are no signs of cancer at this time.

    Because of the chance that cancer can come back, your doctor will monitor you for many years and do tests to look for signs of cancer’s return. They will also look for signs of late side effects from the cancer treatments you received
    https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis
    .

"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NED vs Complete Remission

Postby teacher2017 » Thu Sep 28, 2017 6:08 am

JJH wrote:
teacher2017 wrote:I'd love to know when you consider yourself NED. Who tells you this? I just had a mass removed and would love to think I'm cancer-free but know that may not be the case. When do you know?


    Partial Remission vs. Complete Remission
    If you're in partial remission, it may mean you can take a break from treatment as long as the cancer doesn't begin to grow again. Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).”Jul 22, 2016
    http://www.webmd.com/cancer/remission-what-does-it-mean
    .

    ...
    Understanding the Difference Between Cure and Remission
    Cure means that there are no traces of your cancer after treatment and the cancer will never come back.

    Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared.

    If you remain in complete remission for 5 years or more, some doctors may say that you are cured. Still, some cancer cells can remain in your body for many years after treatment. These cells may cause the cancer to come back one day. For cancers that return, most do so within the first 5 years after treatment. But, there is a chance that cancer will come back later. For this reason, doctors cannot say for sure that you are cured. The most they can say is that there are no signs of cancer at this time.

    Because of the chance that cancer can come back, your doctor will monitor you for many years and do tests to look for signs of cancer’s return. They will also look for signs of late side effects from the cancer treatments you received
    https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis
    .



Thanks for the info. This is just so depressing.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: NEW-Need some positivity here.

Postby JJH » Thu Sep 28, 2017 7:30 am

teacher2017 wrote:... Hoping pathology report is good...

When you get your pathology report be sure to read it thoroughly. Here is a link to some more information on pathology reports:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57976&p=456787#p456787

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58610&p=461416#p461416

Be sure to ask about your CEA level and your MSI status before you start any chemo.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Sep 28, 2017 7:23 pm

Andrea1976 wrote:That's NOT truth. From the info you have shared. You might still be stage 1 and completely cured by surgery alone. It seems that it might had been a polyp gone cancerous. 95% stage 1 is cured by surgery. Even stage 3 about 50% is cured by surgery alone if I remember correctly.


Surgeon said it was a polyp that turned cancerous but was there a long time. I don't know the pathology report yet. Though the surgeon said he did not see a spread, (just like the Ct scan), nothing is said until pathology. I'm thinking this cancer stuff is such a crap shoot.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: NEW-Need some positivity here.

Postby Andrea1976 » Thu Sep 28, 2017 8:22 pm

That's a great news! Polyps are usually early cancers. I also had a polyp but it was only cancerous at the very top. It was completely removed during colonoscopy. It was a mushroom type / pedunculated. Yours was probably sessil because otherwise it would had been removed during colonoscopy. Unless it was there for very long time time and the stalk of the pedunculated polyp wasn't there anymore. Hopefully yours is still stage 1.

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Sep 29, 2017 6:13 am

Andrea1976 wrote:That's a great news! Polyps are usually early cancers. I also had a polyp but it was only cancerous at the very top. It was completely removed during colonoscopy. It was a mushroom type / pedunculated. Yours was probably sessil because otherwise it would had been removed during colonoscopy. Unless it was there for very long time time and the stalk of the pedunculated polyp wasn't there anymore. Hopefully yours is still stage 1.


I don't think it is. It was large as an orange. Dr said I had it a very long time. I'm so scared.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Sep 29, 2017 6:29 am

teacher2017 wrote:
Andrea1976 wrote:That's a great news! Polyps are usually early cancers. I also had a polyp but it was only cancerous at the very top. It was completely removed during colonoscopy. It was a mushroom type / pedunculated. Yours was probably sessil because otherwise it would had been removed during colonoscopy. Unless it was there for very long time time and the stalk of the pedunculated polyp wasn't there anymore. Hopefully yours is still stage 1.


I don't think it is. It was large as an orange. Dr said I had it a very long time. I just had a resection. Recovering nicely but I'm still so scared.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Fri Sep 29, 2017 7:57 am

The doctor told me my tumor was probably there for 5 years. Mine was rectal cancer, 2cm and 5 cm from anal verge. I had a colonoscopy five years before. He said it was either way too small to be seen, or began right after. I was a stage 2A and all the pre surgery tests were correct. No spread in other organs, or lymph nodes. Be positive, all info you have received has been good thus far.
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

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: NEW-Need some positivity here.

Postby Andrea1976 » Fri Sep 29, 2017 8:31 am

Polyps can get very big. My was huge. 2 cm stalk and 3 cm head. The cancer was 0.6 cm on the top of the head. I didn't have any symptoms and suddenly started to bleed so I had colonoscopy. I think my polyp could had been there for 10 years from what I have read. My kids 13 and almost 16 will have to start colonoscopy st their 20s.

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Sep 29, 2017 11:34 am

Andrea1976 wrote:Polyps can get very big. My was huge. 2 cm stalk and 3 cm head. The cancer was 0.6 cm on the top of the head. I didn't have any symptoms and suddenly started to bleed so I had colonoscopy. I think my polyp could had been there for 10 years from what I have read. My kids 13 and almost 16 will have to start colonoscopy st their 20s.


I thought all colon cancer basically starts with these polyps. Correct?
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21


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