For Stage III's: NED for how long now?

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Re: For Stage III's: NED for how long now?

Postby Guest » Fri Nov 27, 2009 8:51 pm

laxmom3 wrote:One question I have for you all- my GI doctor said that since my colonoscopy was clear, no sign of cancer, and no polyps, etc. I didn't need to have another one for 3 years- is that normal? I was told it was, though I still feel uneasy about it. I was told a yearly CT scan was enough.


The guidelines for followup surveillance of colorectal cancer patients are on on this website: http://www.guideline.gov/summary/summar ... 3&nbr=4896

In terms of colonoscopies, the guidelines state: "All patients with colon and rectal cancer should have a colonoscopy for the pre- or perioperative documentation of a cancer- and polyp-free colon. After the surgical treatment of colorectal cancer, the Panel recommends the surveillance guideline presented by the American Gastroenterological Association (AGA): a colonoscopy at 3 years and, if normal, every 5 years thereafter. For colorectal cancer patients with high-risk genetic syndromes, the physician should consider the guideline published by the AGA (available at http://www.gastrojournal.org/article/PI ... 1/fulltext)."

marian
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Re: For Stage III's: NED for how long now?

Postby marian » Fri Nov 27, 2009 10:41 pm

I was stage III anal cancer with 4 lymph nodes, penetration of the muscle wall and nodes visible in my liver and lungs. Diagnosed January 2006, I passed the tumor on 4/10/2006 and had my surgery 6/12/2006. One of those dates must be my anniversary. There was no evidence of disease in the tissue removed during the surgery. I've heard that at the 5 year mark they call you cured and I plan on going with that.

By the way, initially my surgeon had said 3 years after surgery before I'd need a colonoscopy. I was having regular PET/CT scans. By the time I reached the 2 year mark, he ordered the colonoscopy, if he hadn't, I would have insisted. Drs seem to vary between 1 and 2 years for the 1st NED colonoscopy, 3 years seems to be quite unusual.
1/06 Diagnosis Stage III Anal Cancer
2/06 Chemo
6/06 Colostomy
NED ever since

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dianetavegia
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Re: For Stage III's: NED for how long now?

Postby dianetavegia » Sat Nov 28, 2009 1:50 pm

Those guidelines fit with what my onc said, too.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

michele
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Re: For Stage III's: NED for how long now?

Postby michele » Sun Dec 06, 2009 7:25 am

I am coming up on 4 years since surgery with stage 3c. Then Chemo till 8/06. I have just been busy with work and trying to recapture some normalcy. But, I do visit the site at intervals. Just not as regularly as I would like.
Diagnosed Dec 2005 stage 3C
LAR Dec 2005
Mom finished chemo for stage 3B Jan 2006
I had chemo Feb 2006-Aug 2007
Currently NED

vancanes
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Re: For Stage III's: NED for how long now?

Postby vancanes » Sun Dec 06, 2009 6:37 pm

I posted before my five year visit at Sloan Kettering that I was hoping I was five years NED. Well I had my check-up and I am five years NED. I was originally diganosed Stage IIIC with 6 nodes positive. My doctor at Sloan told me that with a lot of luck and a lot of medicine I would live. I am alive. So if I am alive why not you. Chemo is not a science. Keep the faith..............We don't know why some survive and some don't.

Love,

Lori

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dianetavegia
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Re: For Stage III's: NED for how long now?

Postby dianetavegia » Sun Dec 06, 2009 8:12 pm

Congrats Lori! Did they use the word 'cured'? Sounds like it to me!

Since you were 5 years ago, I assume you didn't have FOLFOX (Oxi combo).... which has been shown to increase disease free survival 8)

Enjoy life and God Bless!

Diane


Christmas.... is about the CROSS!
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

JennyB
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Re: For Stage III's: NED for how long now?

Postby JennyB » Sun Dec 06, 2009 9:50 pm

My husband finished his chemo about three months ago and will have his first post-chemo scan this Wednesday. Please send positive thoughts his way! I'm hoping he will be NED just like all of you!

I do have a really stupid question. A lot of you were talking about the guidelines regarding follow-up colonoscopies. My husband actually had his entire colon removed during emergency surgery before he was even diagnosed (he had UC and his colon was necrotic). I know I can ask the onc on Wednesday, but since I am impatient, i thought I would ask you all what they would do in his situation. :mrgreen:
He will be having takedown surgery in February!
Jennifer
Wife of Scott, diagnosed at age 34 on 3-27-09, now 37
Stage III-C CC, 15 out of 36 nodes involved
Ulcerative colitis since age 11, colon removed 3-25-09
He finished Folfox on 9-23-09
Permanent ileostomy March 2012
NED so far!

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dianetavegia
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Re: For Stage III's: NED for how long now?

Postby dianetavegia » Fri Dec 11, 2009 11:14 am

Michelle, Check out the first post on page 4 that has a link to recommended CT times, etc.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

JennyB
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Location: St. Louis

Re: For Stage III's: NED for how long now?

Postby JennyB » Fri Dec 11, 2009 12:06 pm

My husband got the best Hanukkah present -- his first post chemo scan was clear!
Jennifer
Wife of Scott, diagnosed at age 34 on 3-27-09, now 37
Stage III-C CC, 15 out of 36 nodes involved
Ulcerative colitis since age 11, colon removed 3-25-09
He finished Folfox on 9-23-09
Permanent ileostomy March 2012
NED so far!

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Rui
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Re: For Stage III's: NED for how long now?

Postby Rui » Sat Dec 12, 2009 10:08 pm

I was waiting for this day to post here!

As of today, I'm officially NED for 2 years. Now counting down to the next milestone, 3 years after surgery, next March.
Diagnosed and surgery @ March 2007 ( age 29 ) - 50 cm of colon removed, Laparoscopic surgery
Stage IIIB - 2 nodes out of 13, T3N1M0
Chemo from 7 June 2007 to 7 November 2007 - 12 cycles of Oxaliplatin + 5FU with 48h pump
Officially NED since 12/12/2007

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Joanne 814
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Re: For Stage III's: NED for how long now?

Postby Joanne 814 » Sat Dec 12, 2009 11:31 pm

YAY Jennifer! YA Rui!! I have my annual CT scan coming up in January. Just celebrated 2 years diagnosis and surgery.

ONWARD!!


Joanne
Age: 51
Dx: Nov 07 @ age 43
Stage IIIC, RCa
Colon Resection: Nov 07, 4 of 27 LN
Chemo/Radiation: 28 treatments w/constant 5FU (Jan-Feb 08)
Chemo: Folfox, 12 cycles (Mar-Aug 08) DONE 8-8-08
CT Scan 1-09 NED

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dianetavegia
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Re: For Stage III's: NED for how long now?

Postby dianetavegia » Thu Dec 17, 2009 7:33 pm

I am officially 1 year NED! Well the actual date is Jan. 7th but doctor had me come in this week instead of right after his off time.

Thank you Jesus! What a wonderful gift I have been given....
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

ViceMan2
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Location: Buffalo, NY

Re: For Stage III's: NED for how long now?

Postby ViceMan2 » Thu Dec 17, 2009 10:13 pm

Two years as of Jan, 2010!
Dx 3/07. Stage III
Resection 5/07.
NED 1/08

Anonymouse
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Re: For Stage III's: NED for how long now?

Postby Anonymouse » Fri Dec 18, 2009 12:27 am

I was told a yearly survey on the rectum would be enough, I am genetic so that's normal. As for a colonoscopy, don't know if we'll need one or not since I have no colon. The less Miralax I drink, the better.

JennyB wrote:My husband finished his chemo about three months ago and will have his first post-chemo scan this Wednesday. Please send positive thoughts his way! I'm hoping he will be NED just like all of you!

I do have a really stupid question. A lot of you were talking about the guidelines regarding follow-up colonoscopies. My husband actually had his entire colon removed during emergency surgery before he was even diagnosed (he had UC and his colon was necrotic). I know I can ask the onc on Wednesday, but since I am impatient, i thought I would ask you all what they would do in his situation. :mrgreen:
He will be having takedown surgery in February!
Dx 9/2009 with 2 cancers in colon
KRAS wild,HNPCC/Lynch Syndrome (MSH2)
T3,N1,M0 Poorly differentiated Signet Ring
Total colectomy with ileorectal anastomosis 10/2009
FOLFOX complete 5/2010

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HollyID
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Re: For Stage III's: NED for how long now?

Postby HollyID » Wed Dec 30, 2009 7:14 pm

You are all truly inspirations for us that haven't even started treatment yet.

I so want to say I'm NED in year. :o)
Holly, 47
11/17/09 colonoscopy;
11/23/09 dx with adenocarcinoma;
12/03/09 LAR
Stage IIIB T3N1M0 1/11 LN
1/12/09 CT NED
1/19/09 Start Folfox
6/24/10 Done with chemo!!!
7/7/10 CT scan. I'm in NED'sville.
9/11/12 colonoscopy for bleeding (staple from anastomotic site)
7/31/15 New tumor discovered near rectum. Biopsied. Adenocarcinoma. CEA 3.5 Lynch negative
8-10/2015 Radiation
12/14/2015 Revision of LAR with new permanent colostomy


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